Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations, and prevention tips for patients and caregivers.
Alzheimers Diabetes Osteoporosis
Asthma Epilepsy/Sezures Parkinson's Disease
Breast Cancer Hepatitis C Sleep Apnea
CHF Multiple Sclerosis Urinary Incontinence
COPD Muscular Dystrophy Wound Care
Cystic Fibrosis Obesity  
     

Help for Patients and Caregivers : Seizures and Epilepsy

Few experiences match the drama of a convulsive seizure. A person having a severe seizure may cry out, fall to the floor unconscious, twitch or move uncontrollably, drool, or even lose bladder control. Within minutes, the attack is over, and the person regains consciousness but is exhausted and dazed. This is the image most people have when they hear the word epilepsy. However, this type of seizure -- a generalized tonic-clonic seizure -- is only one kind of epilepsy. There are many other kinds, each with a different set of symptoms.

Epilepsy was one of the first brain disorders to be described. It was mentioned in ancient Babylon more than 3,000 years ago. The strange behavior caused by some seizures has contributed through the ages to many superstitions and prejudices. The word epilepsy is derived from the Greek word for "attack." People once thought that those with epilepsy were being visited by demons or gods. However, in 400 B.C., the early physician Hippocrates suggested that epilepsy was a disorder of the brain -- and we now know that he was right.

What is Epilepsy?
What Causes Epilepsy?
What Are the Different Kinds of Seizures?
What Are the Different Kinds of Epilepsy?
When Are Seizures Not Epilepsy?
How is Epilepsy Diagnosed?
Can Epilepsy be Prevented?
How can Epilepsy be Treated?
What To Do If You See Someone Having a Seizure

Where can I get more information?


 

What is Epilepsy?

Epilepsy is a brain disorder in which clusters of nerve cells, or neurons, in the brain sometimes signal abnormally. Neurons normally generate electrochemical impulses that act on other neurons, glands, and muscles to produce human thoughts, feelings, and actions. In epilepsy, the normal pattern of neuronal activity becomes disturbed, causing strange sensations, emotions, and behavior, or sometimes convulsions, muscle spasms, and loss of consciousness. During a seizure, neurons may fire as many as 500 times a second, much faster than the normal rate of about 80 times a second. In some people, this happens only occasionally; for others, it may happen up to hundreds of times a day.

More than 2 million people in the United States -- about 1 in 100 -- have experienced an unprovoked seizure or been diagnosed with epilepsy. For about 80 percent of those diagnosed with epilepsy, seizures can be controlled with modern medicines and surgical techniques. However, about 20 percent of people with epilepsy will continue to experience seizures even with the best available treatment. Doctors call this situation intractable epilepsy. Having a seizure does not necessarily mean that a person has epilepsy. Only when a person has had two or more seizures is he or she considered to have epilepsy.

Epilepsy is not contagious and is not caused by mental illness or mental retardation. Some people with mental retardation may experience seizures, but seizures do not necessarily mean the person has or will develop mental impairment. Many people with epilepsy have normal or above-average intelligence. Famous people who are known or rumored to have had epilepsy include the Russian writer Dostoyevsky, the philosopher Socrates, the military general Napoleon, and the inventor of dynamite, Alfred Nobel, who established the Nobel Prize. Several Olympic medalists and other athletes also have had epilepsy. Seizures sometimes do cause brain damage, particularly if they are severe. However, most seizures do not seem to have a detrimental effect on the brain. Any changes that do occur are usually subtle, and it is often unclear whether these changes are caused by the seizures themselves or by the underlying problem that caused the seizures.

While epilepsy cannot currently be cured, for some people it does eventually go away. One study found that children with idiopathic epilepsy, or epilepsy with an unknown cause, had a 68 to 92 percent chance of becoming seizure-free by 20 years after their diagnosis. The odds of becoming seizure-free are not as good for adults or for children with severe epilepsy syndromes, but it is nonetheless possible that seizures may decrease or even stop over time. This is more likely if the epilepsy has been well-controlled by medication or if the person has had epilepsy surgery.

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What Causes Epilepsy?

Epilepsy is a disorder with many possible causes. Anything that disturbs the normal pattern of neuron activity -- from illness to brain damage to abnormal brain development -- can lead to seizures.

Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve signaling chemicals called neurotransmitters, or some combination of these factors. Researchers believe that some people with epilepsy have an abnormally high level of excitatory neurotransmitters that increase neuronal activity, while others have an abnormally low level of inhibitory neurotransmitters that decrease neuronal activity in the brain. Either situation can result in too much neuronal activity and cause epilepsy. One of the most-studied neurotransmitters that plays a role in epilepsy is GABA, or gamma-aminobutyric acid, which is an inhibitory neurotransmitter. Research on GABA has led to drugs that alter the amount of this neurotransmitter in the brain or change how the brain responds to it. Researchers also are studying excitatory neurotransmitters such as glutamate.

In some cases, the brain's attempts to repair itself after a head injury, stroke, or other problem may inadvertently generate abnormal nerve connections that lead to epilepsy. Abnormalities in brain wiring that occur during brain development also may disturb neuronal activity and lead to epilepsy.

Research has shown that the cell membrane that surrounds each neuron plays an important role in epilepsy. Cell membranes are crucial for a neuron to generate electrical impulses. For this reason, researchers are studying details of the membrane structure, how molecules move in and out of membranes, and how the cell nourishes and repairs the membrane. A disruption in any of these processes may lead to epilepsy. Studies in animals have shown that, because the brain continually adapts to changes in stimuli, a small change in neuronal activity, if repeated, may eventually lead to full-blown epilepsy. Researchers are investigating whether this phenomenon, called kindling, may also occur in humans.

In some cases, epilepsy may result from changes in non-neuronal brain cells called glia. These cells regulate concentrations of chemicals in the brain that can affect neuronal signaling.

About half of all seizures have no known cause. However, in other cases, the seizures are clearly linked to infection, trauma, or other identifiable problems.

Genetic Factors

Research suggests that genetic abnormalities may be some of the most important factors contributing to epilepsy. Some types of epilepsy have been traced to an abnormality in a specific gene. Many other types of epilepsy tend to run in families, which suggests that genes influence epilepsy. Some researchers estimate that more than 500 genes could play a role in this disorder. However, it is increasingly clear that, for many forms of epilepsy, genetic abnormalities play only a partial role, perhaps by increasing a person's susceptibility to seizures that are triggered by an environmental factor.

Several types of epilepsy have now been linked to defective genes for ion channels, the "gates" that control the flow of ions in and out of cells and regulate neuron signaling. Another gene, which is missing in people with progressive myoclonus epilepsy, codes for a protein called cystatin B. This protein regulates enzymes that break down other proteins. Another gene, which is altered in a severe form of epilepsy called LaFora's disease, has been linked to a gene that helps to break down carbohydrates.

While abnormal genes sometimes cause epilepsy, they also may influence the disorder in subtler ways. For example, one study showed that many people with epilepsy have an abnormally active version of a gene that increases resistance to drugs. This may help explain why anticonvulsant drugs do not work for some people. Genes also may control other aspects of the body's response to medications and each person's susceptibility to seizures, or seizure threshold. Abnormalities in the genes that control neuronal migration -- a critical step in brain development -- can lead to areas of misplaced or abnormally formed neurons, or dysplasia, in the brain that can cause epilepsy. In some cases, genes may contribute to development of epilepsy even in people with no family history of the disorder. These people may have a newly developed abnormality, or mutation, in an epilepsy-related gene.

Other Disorders

In many cases, epilepsy develops as a result of brain damage from other disorders. For example, brain tumors, alcoholism, and Alzheimer's disease frequently lead to epilepsy because they alter the normal workings of the brain. Strokes, heart attacks, and other conditions that deprive the brain of oxygen also can cause epilepsy in some cases. About 32 percent of all cases of newly developed epilepsy in elderly people appears to be due to cerebrovascular disease, which reduces the supply of oxygen to brain cells. Meningitis, AIDS, viral encephalitis, and other infectious diseases can lead to epilepsy, as can hydrocephalus -- a condition in which excess fluid builds up in the brain. Epilepsy also can result from intolerance to wheat gluten (also known as celiac disease), or from a parasitic infection of the brain called neurocysticercosis. Seizures may stop once these disorders are treated successfully. However, the odds of becoming seizure-free after the primary disorder is treated are uncertain and vary depending on the type of disorder, the brain region that is affected, and how much brain damage occurred prior to treatment.

Epilepsy is associated with a variety of developmental and metabolic disorders, including cerebral palsy, neurofibromatosis, pyruvate dependency, tuberous sclerosis, Landau-Kleffner syndrome, and autism. Epilepsy is just one of a set of symptoms commonly found in people with these disorders.

Head Injury

In some cases, head injury can lead to seizures or epilepsy. Safety measures such as wearing seat belts in cars and using helmets when riding a motorcycle or playing competitive sports can protect people from epilepsy and other problems that result from head injury.

Prenatal Injury and Developmental Problems

The developing brain is susceptible to many kinds of injury. Maternal infections, poor nutrition, and oxygen deficiencies are just some of the conditions that may take a toll on the brain of a developing baby. These conditions may lead to cerebral palsy, which often is associated with epilepsy, or they may cause epilepsy that is unrelated to any other disorders. About 20 percent of seizures in children are due to cerebral palsy or other neurological abnormalities. Abnormalities in genes that control development also may contribute to epilepsy. Advanced brain imaging has revealed that some cases of epilepsy that occur with no obvious cause may be associated with areas of dysplasia in the brain that probably develop before birth.

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What Are the Different Kinds of Seizures?

Doctors have described more than 30 different types of seizures. Seizures are divided into two major categories -- focal seizures and generalized seizures. However, there are many different types of seizures in each of these categories.

Focal Seizures

Focal seizures, also called partial seizures, occur in just one part of the brain. About 60 percent of people with epilepsy have focal seizures. These seizures are frequently described by the area of the brain in which they originate. For example, someone might be diagnosed with focal frontal lobe seizures.

In a simple focal seizure, the person will remain conscious but experience unusual feelings or sensations that can take many forms. The person may experience sudden and unexplainable feelings of joy, anger, sadness, or nausea. He or she also may hear, smell, taste, see, or feel things that are not real.

In a complex focal seizure, the person has a change in or loss of consciousness. His or her consciousness may be altered, producing a dreamlike experience. People having a complex focal seizure may display strange, repetitious behaviors such as blinks, twitches, mouth movements, or even walking in a circle. These repetitious movements are called automatisms. More complicated actions, which may seem purposeful, can also occur involuntarily. Patients may also continue activities they started before the seizure began, such as washing dishes in a repetitive, unproductive fashion. These seizures usually last just a few seconds.

Some people with focal seizures, especially complex focal seizures, may experience auras -- unusual sensations that warn of an impending seizure. These auras are actually simple focal seizures in which the person maintains consciousness. The symptoms an individual person has, and the progression of those symptoms, tend to be stereotyped, or similar every time.

The symptoms of focal seizures can easily be confused with other disorders. For instance, the dreamlike perceptions associated with a complex focal seizure may be misdiagnosed as migraine headaches, which also may cause a dreamlike state. The strange behavior and sensations caused by focal seizures also can be istaken for symptoms of narcolepsy, fainting, or even mental illness. It may take many tests and careful monitoring by an experienced physician to tell the difference between epilepsy and other disorders.

Generalized Seizures

Generalized seizures are a result of abnormal neuronal activity on both sides of the brain. These seizures may cause loss of consciousness, falls, or massive muscle spasms.

There are many kinds of generalized seizures. In absence seizures, the person may appear to be staring into space and/or have jerking or twitching muscles. These seizures are sometimes referred to as petit mal seizures, which is an older term. Tonic seizures cause stiffening of muscles of the body, generally those in the back, legs, and arms. Clonic seizures cause repeated jerking movements of muscles on both sides of the body. Myoclonic seizures cause jerks or twitches of the upper body, arms, or legs. Atonic seizures cause a loss of normal muscle tone. The affected person will fall down or may drop his or her head involuntarily. Tonic-clonic seizures cause a mixture of symptoms, including stiffening of the body and repeated jerks of the arms and/or legs as well as loss of consciousness. Tonic-clonic seizures are sometimes referred to by an older term: grand mal seizures.

Not all seizures can be easily defined as either focal or generalized. Some people have seizures that begin as focal seizures but then spread to the entire brain. Other people may have both types of seizures but with no clear pattern.

Society's lack of understanding about the many different types of seizures is one of the biggest problems for people with epilepsy. People who witness a non-convulsive seizure often find it difficult to understand that behavior which looks deliberate is not under the person's control. In some cases, this has led to the affected person being arrested oradmitted to a psychiatric hospital. To combat these problems, people everywhere need to understand the many different types of seizures and how they may appear.

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What Are the Different Kinds of Epilepsy?

Just as there are many different kinds of seizures, there are many different kinds of epilepsy. Doctors have identified hundreds of different epilepsy syndromes -- disorders characterized by a specific set of symptoms that include epilepsy. Some of these syndromes appear to be hereditary. For other syndromes, the cause is unknown. Epilepsy syndromes are frequently described by their symptoms or by where in the brain they originate. People should discuss the implications of their type of epilepsy with their doctors to understand the full range of symptoms, the possible treatments, and the prognosis.

People with absence epilepsy have repeated absence seizures that cause momentary lapses of consciousness. These seizures almost always begin in childhood or adolescence, and they tend to run in families, suggesting that they may be at least partially due to a defective gene or genes. Some people with absence seizures have purposeless movements during their seizures, such as a jerking arm or rapidly blinking eyes. Others have no noticeable symptoms except for brief times when they are "out of it." Immediately after a seizure, the person can resume whatever he or she was doing. However, these seizures may occur so frequently that the person cannot concentrate in school or other situations. Childhood absence epilepsy usually stops when the child reaches puberty. Absence seizures usually have no lasting effect on intelligence or other brain functions.

Temporal lobe epilepsy, or TLE, is the most common epilepsy syndrome with focal seizures. These seizures are often associated with auras. TLE often begins in childhood. Research has shown that repeated temporal lobe seizures can cause a brain structure called the hippocampus to shrink over time. The hippocampus is important for memory and learning. While it may take years of temporal lobe seizures for measurable hippocampal damage to occur, this finding underlines the need to treat TLE early and as effectively as possible.

Neocortical epilepsy is characterized by seizures that originate from the brain's cortex, or outer layer. The seizures can be either focal or generalized. They may include strange sensations, visual hallucinations, emotional changes, muscle spasms, convulsions, and a variety of other symptoms, depending on where in the brain the seizures originate.

There are many other types of epilepsy, each with its own characteristic set of symptoms. Many of these, including Lennox-Gastaut syndrome and Rasmussen's encephalitis, begin in childhood. Children with Lennox-Gastaut syndrome have severe epilepsy with several different types of seizures, including atonic seizures, which cause sudden falls and are also called drop attacks. This severe form of epilepsy can be very difficult to treat effectively. Rasmussen's encephalitis is a progressive type of epilepsy in which half of the brain shows continual inflammation. It sometimes is treated with a radical surgical procedure called hemispherectomy (see the section on Surgery). Some childhood epilepsy syndromes, such as childhood absence epilepsy, tend to go into remission or stop entirely during adolescence, whereas other syndromes such as juvenile myoclonic epilepsy and Lennox-Gastaut syndrome are usually present for life once they develop. Seizure syndromes do not always appear in childhood, however.

Epilepsy syndromes that are easily treated, do not seem to impair cognitive functions or development, and usually stop spontaneously are often described as benign. Benign epilepsy syndromes include benign infantile encephalopathy and benign neonatal convulsions. Other syndromes, such as early myoclonic encephalopathy, include neurological and developmental problems. However, these problems may be caused by underlying neurodegenerative processes rather than by the seizures. Epilepsy syndromes in which the seizures and/or the person's cognitive abilities get worse over time are called progressive epilepsy.

Several types of epilepsy begin in infancy. The most common type of infantile epilepsy is infantile spasms, clusters of seizures that usually begin before the age of 6 months. During these seizures the infant may bend and cry out. Anticonvulsant drugs often do not work for infantile spasms, but the seizures can be treated with ACTH (adrenocorticotropic hormone) or prednisone.

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When Are Seizures Not Epilepsy?

While any seizure is cause for concern, having a seizure does not by itself mean a person has epilepsy. First seizures, febrile seizures, nonepileptic events, and eclampsia are examples of seizures that may not be associated with epilepsy.

First Seizures

Many people have a single seizure at some point in their lives. Often these seizures occur in reaction to anesthesia or a strong drug, but they also may be unprovoked, meaning that they occur without any obvious triggering factor. Unless the person has suffered brain damage or there is a family history of epilepsy or other neurological abnormalities, these single seizures usually are not followed by additional seizures. One recent study that followed patients for an average of 8 years found that only 33 percent of people have a second seizure within 4 years after an initial seizure. People who did not have a second seizure within that time remained seizure-free for the rest of the study. For people who did have a second seizure, the risk of a third seizure was about 73 percent on average by the end of 4 years.

When someone has experienced a first seizure, the doctor will usually order an electroencephalogram, or EEG, to determine what type of seizure the person may have had and if there are any detectable abnormalities in the person's brain waves. Thedoctor also may order brain scans to identify abnormalities that may be visible in the brain. These tests may help the doctor decide whether or not to treat the person with antiepileptic drugs. In some cases, drug treatment after the first seizure may help prevent future seizures and epilepsy. However, the drugs also can cause detrimental side effects, so doctors prescribe them only when they feel the benefits outweigh the risks. Evidence suggests that it may be beneficial to begin anticonvulsant medication once a person has had a second seizure, as the chance of future seizures increases significantly after this occurs.

Febrile Seizures

Sometimes a child will have a seizure during the course of an illness with a high fever. These seizures are called febrile seizures (febrile is derived from the Latin word for "fever") and can be very alarming to the parents and other caregivers. In the past, doctors usually prescribed a course of anticonvulsant drugs following a febrile seizure in the hope of preventing epilepsy. However, most children who have a febrile seizure do not develop epilepsy, and long-term use of anticonvulsant drugs in children may damage the developing brain or cause other detrimental side effects. Experts at a 1980 consensus conference coordinated by the National Institutes of Health concluded that preventive treatment after a febrile seizure is generally not warranted unless certain other conditions are present: a family history of epilepsy, signs of nervous system impairment prior to the seizure, or a relatively prolonged or complicated seizure. The risk of subsequent non-febrile seizures is only 2 to 3 percent unless one of these factors is present.

Researchers have now identified several different genes that influence the risk of febrile seizures in certain families. Studying these genes may lead to new understanding of how febrile seizures occur and perhaps point to ways of preventing them.

Nonepileptic Events

Sometimes people appear to have seizures, even though their brains show no seizure activity. This type of phenomenon has various names, including nonepileptic events and pseudoseizures. Both of these terms essentially mean something that looks like a seizure but isn't one. Nonepileptic events that are psychological in origin may be referred to as psychogenic seizures. Psychogenic seizures may indicate dependence, a need for attention, avoidance of stressful situations, or specific psychiatric conditions. Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. Other people who have psychogenic seizures do not have epilepsy at all. Psychogenic seizures cannot be treated in the same way as epileptic seizures. Instead, they are often treated by mental health specialists.

Other nonepileptic events may be caused by narcolepsy, Tourette syndrome, cardiac arrythmia, and other medical conditions with symptoms that resemble seizures. Because symptoms of these disorders can look very much like epileptic seizures, they are often mistaken for epilepsy. Distinguishing between true epileptic seizures and nonepileptic events can be very difficult and requires a thorough medical assessment, careful monitoring, and knowledgeable health professionals. Improvements in brain scanning and monitoring technology may improve diagnosis of nonepileptic events in the future.

Eclampsia

Eclampsia is a life-threatening condition that can develop in pregnant women. Its symptoms include sudden elevations of blood pressure and seizures. Pregnant women who develop unexpected seizures should be rushed to a hospital immediately. Eclampsia can be treated in a hospital setting and usually does not result in additional seizures or epilepsy once the pregnancy is over.

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How is Epilepsy Diagnosed?

Doctors have developed a number of different tests to determine whether a person has epilepsy and, if so, what kind of seizures the person has. In some cases, people may have symptoms that look very much like a seizure but in fact are nonepileptic events caused by other disorders. Even doctors may not be able to tell the difference between these disorders and epilepsy without close observation and intensive testing.

EEG Monitoring

An EEG records brain waves detected by electrodes placed on the scalp. This is the most common diagnostic test for epilepsy and can detect abnormalities in the brain's electrical activity. People with epilepsy frequently have changes in their normal pattern of brain waves, even when they are not experiencing a seizure. While this type of test can be very useful in diagnosing epilepsy, it is not foolproof. Some people continue to show normal brain wave patterns even after they have experienced a seizure. In other cases, the unusual brain waves are generated deep in the brain where the EEG is unable to detect them. Many people who do not have epilepsy also show some unusual brain activity on an EEG. Whenever possible, an EEG should be performed within 24 hours of a patient's first seizure. Ideally, EEGs should be performed while the patient is sleeping as well as when he or she is awake, because brain activity during sleep is often quite different than at other times.

Video monitoring is often used in conjunction with EEG to determine the nature of a person's seizures. It also can be used in some cases to rule out other disorders such as cardiac arrythmia or narcolepsy that may look like epilepsy.

Brain Scans

One of the most important ways of diagnosing epilepsy is through the use of brain scans. The most commonly used brain scans include CT (computed tomography), PET (positron emission tomography) and MRI (magnetic resonance imaging). CT and MRI scans reveal the structure of the brain, which can be useful for identifying brain tumors, cysts, and other structural abnormalities. PET and an adapted kind of MRI called functional MRI (fMRI) can be used to monitor the brain's activity and detect abnormalities in how it works. SPECT (single photon emission computed tomography) is a relatively new kind of brain scan that is sometimes used to locate seizure foci in the brain.

In some cases, doctors may use an experimental type of brain scan called a magnetoencephalogram, or MEG. MEG detects the magnetic signals generated by neurons to allow doctors to monitor brain activity at different points in the brain over time, revealing different brain functions. While MEG is similar in concept to EEG, it does not require electrodes and it can detect signals from deeper in the brain than an EEG. Doctors also are experimenting with brain scans called magnetic resonance spectroscopy (MRS) that can detect abnormalities in the brain's biochemical processes, and with near-infrared spectroscopy, a technique that can detect oxygen levels in brain tissue.

Medical History

Taking a detailed medical history, including symptoms and duration of the seizures, is still one of the best methods available to determine if a person has epilepsy and what kind of seizures he or she has. The doctor will ask questions about the seizures and any past illnesses or other symptoms a person may have had. Since people who have suffered a seizure often do not remember what happened, caregivers' accounts of the seizure are vital to this evaluation.

Blood Tests

Doctors often take blood samples for testing, particularly when they are examining a child. These blood samples are often screened for metabolic or genetic disorders that may be associated with the seizures. They also may be used to check for underlying problems such as infections, lead poisoning, anemia, and diabetes that may be causing or triggering the seizures.

Developmental, Neurological, and Behavioral Tests

Doctors often use tests devised to measure motor abilities, behavior, and intellectual capacity as a way to determine how the epilepsy is affecting that person. These tests also can provide clues about what kind of epilepsy the person has.

Can Epilepsy be Prevented?

Many cases of epilepsy can be prevented by wearing seatbelts and bicycle helmets, putting children in car seats, and other measures that prevent head injury and other trauma. Prescribing medication after first or second seizures or febrile seizures also may help prevent epilepsy in some cases. Good prenatal care, including treatment of high blood pressure and infections during pregnancy, can prevent brain damage in the developing baby that may lead to epilepsy and other neurological problems later. Treating cardiovascular disease, high blood pressure, infections, and other disorders that can affect the brain during adulthood and aging also may prevent many cases of epilepsy. Finally, identifying the genes for many neurological disorders can provide opportunities for genetic screening and prenatal diagnosis that may ultimately prevent many cases of epilepsy.

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How can Epilepsy be Treated?

Accurate diagnosis of the type of epilepsy a person has is crucial for finding an effective treatment. There are many different ways to treat epilepsy. Currently available treatments can control seizures at least some of the time in about 80 percent of people with epilepsy. However, another 20 percent -- about 600,000 people with epilepsy in the United States -- have intractable seizures, and another 400,000 feel they get inadequate relief from available treatments. These statistics make it clear that improved treatments are desperately needed.

Doctors who treat epilepsy come from many different fields of medicine. They include neurologists, pediatricians, pediatric neurologists, internists, and family physicians, as well as neurosurgeons and doctors called epileptologists who specialize in treating epilepsy. People who need specialized or intensive care for epilepsy may be treated at large medical centers and neurology clinics at hospitals or by neurologists in private practice. Many epilepsy treatment centers are associated with university hospitals that perform research in addition to providing medical care.

Once epilepsy is diagnosed, it isimportant to begin treatment as soon as possible. Research suggests thatmedication and other treatments may be less successful in treating epilepsy once seizures and their consequences become established.

Medications

Accurate diagnosis of the type of epilepsy a person has is crucial for finding an effective treatment. There are many different ways to treat epilepsy. Currently available treatments can control seizures at least some of the time in about 80 percent of people with epilepsy. However, another 20 percent -- about 600,000 people with epilepsy in the United States -- have intractable seizures, and another 400,000 feel they get inadequate relief from available treatments. These statistics make it clear that improved treatments are desperately needed.

Doctors who treat epilepsy come from many different fields of medicine. They include neurologists, pediatricians, pediatric neurologists, internists, and family physicians, as well as neurosurgeons and doctors called epileptologists who specialize in treating epilepsy. People who need specialized or intensive care for epilepsy may be treated at large medical centers and neurology clinics at hospitals or by neurologists in private practice. Many epilepsy treatment centers are associated with university hospitals that perform research in addition to providing medical care.

Once epilepsy is diagnosed, it isimportant to begin treatment as soon as possible. Research suggests thatmedication and other treatments may be less successful in treating epilepsy once seizures and their consequences become established.

Tailoring the dosage of antiepileptic drugs

When a person starts a new epilepsy drug, it is important to tailor the dosage to achieve the best results. People's bodies react to medications in very different and sometimes unpredictable ways, so it may take some time to find the right drug at the right dose to provide optimal control of seizures while minimizing side effects. A drug that has no effect or very bad side effects at one dose may work very well at another dose. Doctors will usually prescribe a low dose of the new drug initially and monitor blood levels of the drug to determine when the best possible dose has been reached.

Generic versions are available for many antiepileptic drugs. The chemicals in generic drugs are exactly the same as in the brand-name drugs, but they may be absorbed or processed differently in the body because of the way they are prepared. Therefore, patients should always check with their doctors before switching to a generic version of their medication.

Discontinuing medication

Some doctors will advise people with epilepsy to discontinue their antiepileptic drugs after 2 years have passed without a seizure. Others feel it is better to wait for 4 to 5 years. Discontinuing medication should always be done with a doctor's advice and supervision. It is very important to continue taking epilepsy medication for as long as the doctor prescribes it. People also should ask the doctor or pharmacist ahead of time what they should do if they miss a dose. Discontinuing medication without a doctor's advice is one of the major reasons people who have been seizure-free begin having new seizures. Seizures that result from suddenly stopping medication can be very serious and can lead to status epilepticus. Furthermore, there is some evidence that uncontrolled seizures trigger changes in neurons that can make it more difficult to treat the seizures in the future.

The chance that a person will eventually be able to discontinue medication varies depending on the person's age and his or her type of epilepsy. More than half of children who go into remission with medication can eventually stop their medication without having new seizures. One study showed that 68 percent of adults who had been seizure-free for 2 years before stopping medication were able to do so without having more seizures and 75 percent could successfully discontinue medication if they had been seizure-free for 3 years. However, the odds of successfully stopping medication are not as good for people with a family history of epilepsy, those who need multiple medications, those with focal seizures, and those who continue to have abnormal EEG results while on medication.

Surgery

When seizures cannot be adequately controlled by medications, doctors may recommend that the person be evaluated for surgery. Surgery for epilepsy is performed by teams of doctors at medical centers. To decide if a person may benefit from surgery, doctors consider the type or types of seizures he or she has. They also take into account the brain region involved and how important that region is for everyday behavior. Surgeons usually avoid operating in areas of the brain that are necessary for speech, language, hearing, or other important abilities. Doctors may perform tests such as a Wada test (administration of the drug amobarbitol into the carotid artery) to find areas of the brain that control speech and memory. They often monitor the patient intensively prior to surgery in order to pinpoint the exact location in the brain where seizures begin. They also may use implanted electrodes to record brain activity from the surface of the brain. This yields better information than an external EEG.

A 1990 National Institutes of Health consensus conference on surgery for epilepsy concluded that there are three broad categories of epilepsy that can be treated successfully with surgery. These include focal seizures, seizures that begin as focal seizures before spreading to the rest of the brain, and unilateral multifocal epilepsy with infantile hemiplegia (such as Rasmussen's encephalitis). Doctors generally recommend surgery only after patients have tried two or three different medications without success, or if there is an identifiable brain lesion--a damaged or dysfunctional area--believed to cause the seizures.

A study published in 2000 compared surgery to an additional year of treatment with antiepileptic drugs in people with longstanding temporal lobe epilepsy. The results showed that 64 percent of patients receiving surgery became seizure-free, compared to 8 percent of those who continued with medication only. Because of this study and other evidence, the American Academy of Neurology (AAN) now recommends surgery for TLE when antiepileptic drugs are not effective. However, the study and the AAN guidelines do not provide guidance on how long seizures should occur, how severe they should be, or how many drugs should be tried before surgery is considered. A nationwide study is now underway to determine how soon surgery for TLE should be performed.

If a person is considered a good candidate for surgery and has seizures that cannot be controlled with available medication, experts generally agree that surgery should be performed as early as possible. It can be difficult for a person who has had years of seizures to fully re-adapt to a seizure-free life if the surgery is successful. The person may never have had an opportunity to develop independence, and he or she may have had difficulties with school and work that could have been avoided with earlier treatment. Surgery should always be performed with support from rehabilitation specialists and counselors who can help the person deal with the many psychological, social, and employment issues he or she may face.

While surgery can significantly reduce or even halt seizures for some people, it is important to remember that any kind of surgery carries some amount of risk (usually small). Surgery for epilepsy does not always successfully reduce seizures and it can result in cognitive or personality changes, even in people who are excellent candidates for surgery. Patients should ask their surgeon about his or her experience, success rates, and complication rates with the procedure they are considering.

Even when surgery completely ends a person's seizures, it is important to continue taking seizure medication for some time to give the brain time to re-adapt. Doctors generally recommend medication for 2 years after a successful operation to avoid new seizures.

Surgery to treat underlying conditions

In cases where seizures are caused by a brain tumor, hydrocephalus, or other conditions that can be treated with surgery, doctors may operate to treat these underlying conditions. In many cases, once the underlying condition is successfully treated, a person's seizures will disappear as well.

Surgery to remove a seizure focus

The most common type of surgery for epilepsy is removal of a seizure focus, or small area of the brain where seizures originate. This type of surgery, which doctors may refer to as a lobectomy or lesionectomy, is appropriate only for focal seizures that originate in just one area of the brain. In general, people have a better chance of becoming seizure-free after surgery if they have a small, well-defined seizure focus. Lobectomies have a 55-70 percent success rate when the type of epilepsy and the seizure focus is well-defined. The most common type of lobectomy is a temporal lobe resection, which is performed for people with temporal lobe epilepsy. Temporal lobe resection leads to a significant reduction or complete cessation of seizures about 70 - 90 percent of the time.

Multiple subpial transection

When seizures originate in part of the brain that cannot be removed, surgeons may perform a procedure called a multiple subpial transection. In this type of operation, which has been commonly performed since 1989, surgeons make a series of cuts that are designed to prevent seizures from spreading into other parts of the brain while leaving the person's normal abilities intact. About 70 percent of patients who undergo a multiple subpial transection have satisfactory improvement in seizure control.

Corpus callosotomy

Corpus callosotomy, or severing the network of neural connections between the right and left halves, or hemispheres, of the brain, is done primarily in children with severe seizures that start in one half of the brain and spread to the other side. Corpus callosotomy can end drop attacks and other generalized seizures. However, the procedure does not stop seizures in the side of the brain where they originate, and these focal seizures may even increase after surgery.

Hemispherectomy and hemispherotomy

These procedures remove half of the brain's cortex, or outer layer. They are used predominantly in children who have seizures that do not respond to medication because of damage that involves only half the brain, as occurs with conditions such as Rasmussen's encephalitis, Sturge-Weber syndrome, and hemimegencephaly. While this type of surgery is very radical and is performed only as a last resort, children often recover very well from the procedure, and their seizures usually cease altogether. With intense rehabilitation, they often recover nearly normal abilities. Since the chance of a full recovery is best in young children, hemispherectomy should be performed as early in a child's life as possible. It is rarely performed in children older than 13.

Devices

The vagus nerve stimulator was approved by the U.S. Food and Drug Administration (FDA) in 1997 for use in people with seizures that are not well-controlled by medication. The vagus nerve stimulator is a battery-powered device that is surgically implanted under the skin of the chest, much like a pacemaker, and is attached to the vagus nerve in the lower neck. This device delivers short bursts of electrical energy to the brain via the vagus nerve. On average, this stimulation reduces seizures by about 20 - 40 percent. Patients usually cannot stop taking epilepsy medication because of the stimulator, but they often experience fewer seizures and they may be able to reduce the dose of their medication. Side effects of the vagus nerve stimulator are generally mild but may include hoarseness, ear pain, a sore throat, or nausea. Adjusting the amount of stimulation can usually eliminate most side effects, although the hoarseness typically persists. The batteries in the vagus nerve stimulator need to be replaced about once every 5 years; this requires a minor operation that can usually be performed as an outpatient procedure.

Several new devices may become available for epilepsy in the future. Researchers are studying whether transcranial magnetic stimulation (TMS), a procedure which uses a strong magnet held outside the head to influence brain activity, may reduce seizures. They also hope to develop implantable devices that can deliver drugs to specific parts of the brain.

Diet

Studies have shown that, in some cases, children may experience fewer seizures if they maintain a strict diet rich in fats and low in carbohydrates. This unusual diet, called the ketogenic diet, causes the body to break down fats instead of carbohydrates to survive. This condition is called ketosis. One study of 150 children whose seizures were poorly controlled by medication found that about one-fourth of the children had a 90 percent or better decrease in seizures with the ketogenic diet, and another half of the group had a 50 percent or better decrease in their seizures. Moreover, some children can discontinue the ketogenic diet after several years and remain seizure-free. The ketogenic diet is not easy to maintain, as it requires strict adherence to an unusual and limited range of foods. Possible side effects include retarded growth due to nutritional deficiency and a buildup of uric acid in the blood, which can lead to kidney stones. People who try the ketogenic diet should seek the guidance of a dietician to ensure that it does not lead to serious nutritional deficiency.

Researchers are not sure how ketosis inhibits seizures. One study showed that a byproduct of ketosis called beta-hydroxybutyrate (BHB) inhibits seizures in animals. If BHB also works in humans, researchers may eventually be able to develop drugs that mimic the seizure-inhibiting effects of the ketogenic diet.

Other Treatment Strategies

Researchers are studying whether biofeedback -- a strategy in which individuals learn to control their own brain waves -- may be useful in controlling seizures. However, this type of therapy is controversial and most studies have shown discouraging results. Taking large doses of vitamins generally does not help a person's seizures and may even be harmful in some cases. But a good diet and some vitamin supplements, particularly folic acid, may help reduce some birth defects and medication-related nutritional deficiencies. Use of non-vitamin supplements such as melatonin is controversial and can be risky. One study showed that melatonin may reduce seizures in some children, while another found that the risk of seizures increased measurably with melatonin. Most non-vitamin supplements such as those found in health food stores are not regulated by the FDA, so their true effects and their interactions with other drugs are largely unknown.

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What To Do If You See Someone Having a Seizure

If you see someone having a seizure with convulsions and/or loss of consciousness, here's how you can help:

  1. Roll the person on his or her side to prevent choking on any fluids or vomit.
  2. Cushion the person's head.
  3. Loosen any tight clothing around the neck.
  4. Keep the person's airway open. If necessary, grip the person's jaw gently and tilt his or her head back.
  5. Do NOT restrict the person from moving unless he or she is in danger.
  6. Do NOT put anything into the person's mouth, not even medicine or liquid. These can cause choking or damage to the person's jaw, tongue, or teeth. Contrary to widespread belief, people cannot swallow their tongues during a seizure or any other time.
  7. Remove any sharp or solid objects that the person might hit during the seizure.
  8. Note how long the seizure lasts and what symptoms occurred so you can tell a doctor or emergency personnel if necessary.
  9. Stay with the person until the seizure ends.
  10. This is a first seizure or you think it might be. If in doubt, check to see if the person has a medical identification card or jewelry stating that they have epilepsy or a seizure disorder.
  11. After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Be patient with the person and try to help him or her find a place to rest if he or she is tired or doesn't feel well. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely.
  12. If you see someone having a non-convulsive seizure, remember that the person's behavior is not intentional. The person may wander aimlessly or make alarming or unusual gestures. You can help by following these guidelines:
  • Remove any dangerous objects from the area around the person or in his or her path.
  • Don't try to stop the person from wandering unless he or she is in danger.
  • Don't shake the person or shout.
  • Stay with the person until he or she is completely alert.

Call 911 if:

  • The person is pregnant or has diabetes.
  • The seizure happened in water.
  • The seizure lasts longer than 5 minutes.
  • The person does not begin breathing again or does not return to consciousness after the seizure stops.
  • Another seizure starts before the person regains consciousness.
  • The person injures himself or herself during the seizure.

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Where can I get more information?

For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:

BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov

Information also is available from the following organizations:

Citizens United for Research in Epilepsy (CURE)
730 N. Franklin
Suite 404
Chicago, IL   60610
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.CUREepilepsy.org
Tel: 312-255-1801
Fax: 312-255-1809
Non-profit grassroots organization formed by parents and families to raise funds for epilepsy research.
Epilepsy Foundation
4351 Garden City Drive
Suite 500
Landover, MD   20785-7223
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.epilepsyfoundation.org
Tel: 301-459-3700 800-EFA-1000 (332-1000)
Fax: 301-577-2684
National charitable organization dedicated to the welfare of people with epilepsy. Works for children and adults affected by seizures through education, advocacy, services, and research towards a cure. Offers a Legal Defense Program through a fund.
Epilepsy Institute
257 Park Avenue South
New York, NY   10010
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.epilepsyinstitute.org
Tel: 212-677-8550
Fax: 212-677-5825
Non-profit organization that provides comprehensive social services and resources for people with epilepsy and their families.
Parents Against Childhood Epilepsy (PACE)
7 East 85th Street
Suite A3
New York, NY   10028
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.paceusa.org
Tel: 212-665-PACE (7223)
Fax: 212-327-3075
Non-profit research resource that provides information and support to families of children with epilepsy.
Family Caregiver Alliance/ National Center on Caregiving
180 Montgomery Street
Suite 1100
San Francisco, CA   94104
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.caregiver.org
Tel: 415-434-3388 800-445-8106
Fax: 415-434-3508
Supports and assists families and caregivers of adults with debilitating health conditions. Offers programs and consultation on caregiving issues at local, state, and national levels. Offers free publications and support online, including a national directory of publicly funded caregiver support programs.
National Council on Patient Information and Education
4915 St. Elmo Avenue
Suite 505
Bethesda, MD   20814-6082
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.talkaboutrx.org
Tel: 301-656-8565
Fax: 301-656-4464
Coalition of nearly 150 organizations committed to safer, more effective medicine use through better communication. Additional website is www.bemedwise.org.
National Family Caregivers Association
10400 Connecticut Avenue
Suite 500
Kensington, MD   20895-3944
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.thefamilycaregiver.org
Tel: 301-942-6430 800-896-3650
Fax: 301-942-2302
Grassroots organization dedicated to supporting and improving the lives of America's family caregivers. Created to educate, support, empower, and advocate for the millions of Americans who care for their ill, aged, or disabled loved ones.
National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT   06813-1968
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
International RadioSurgery Association (IRSA)
P.O. Box 5186
Harrisburg, PA   17110
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.irsa.org
Tel: 717-260-9808
Fax: 717-260-9809
Proactive patient organization providing information and referrals on Gamma Knife, Linac, and particle beam radiosurgery for brain tumors, arteriovenous malformations (AVMs), and neurological pain and movement disorders.
Charlie Foundation to Help Cure Pediatric Epilepsy
1223 Wilshire Blvd.
Suite #815
Santa Monica, CA   90403
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.charliefoundation.org
Tel: 800-FOR-KETO (367-5386) 310-395-6751
Fax: 310-393-1978
Non-profit organization that raises money for scientific research focusing on the ketogenic diet. Offers education programs and materials for families and dieticians.
Epilepsy Therapy Development Project
11921 Freedom Drive
Suite 730
Reston, VA   20190
http://www.epilepsytdp.org
Tel: 703-437-4250
Fax: 703-437-4288
Nonprofit corporation that works to advance new treatments for people living with epilepsy. Supports innovative research in academia and industry. Provides information through the www.epilepsy.com website.
Antiepileptic Drug Pregnancy Registry
MGH East, CNY-149, 10th Floor
149 13th Street
Charlestown, MA   02129-2000
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.aedpregnancyregistry.org
Tel: 888-AED-AED4 (233-2334)
Fax: 617-724-8307
Registry designed to determine what therapies are associated with increased risk of harmful fetal effects. Participation is confidential.
National Council on Patient Information and Education
4915 St. Elmo Avenue
Suite 505
Bethesda, MD   20814-6082
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.talkaboutrx.org
Tel: 301-656-8565
Fax: 301-656-4464
Coalition of nearly 150 organizations committed to safer, more effective medicine use through better communication. Additional website is www.bemedwise.org.
 

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CAREGIVER TIPS & INFORMATION:
10 Tips for Family Caregivers
Questions to Ask Your Healthcare Provider
How to Communicate with an Insurance Provider
Find a Doctor
Information on Seating & Mobility
Tips for Family Caregivers from Doctors
Care Management Techniques You Can Use
Compare Home Health Agencies in Your Area
Additional Resources

 


10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
5. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
6.Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
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Tips for Family Caregivers from Doctors

  • Write questions down so you won’t forget them
  • Be clear about what you want to say to the doctor. Try not to ramble.
  • If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
  • Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
  • Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
  • Recognize that not all questions have answers—especially those beginning with “why.”
  • Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
  • Appreciate what the doctor is doing to help and say thank you from time to time.
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Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is “yes,” you’re not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

  • Gathering information from healthcare providers;
  • An assessment of your care recipient and the home environment;
  • Research into available public and/or private services and resources to meet your loved one’s needs; and
  • Ongoing communication between all parties to keep information up to date and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one’s health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you’ll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control — a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you’re dealing. Reliable information is available from the health agency that deals with your loved one’s condition and the National Institutes of Health. When using the Internet, stick with wellknown medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:
  • Your loved one’s ability to function independently, both physically and mentally.
  • The availability of family and/or friends to form a support network to share the care.
  • The physical environment: Is it accessible or can it be adapted at reasonable cost?
  • Your other responsibilities — at work, at home, and in the community.
  • Your own health and physical abilities.
  • Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you’ve learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what’s going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one’s care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you’ll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn’t family caregivers?

Start advance planning for difficult decisions that may lie ahead. It’s never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you’ll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It’s extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

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Seating & Mobility - As a caregiver, you need to be very understanding to the individuals needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. Getting them involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manor. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
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Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs such office on disabilities, elder affairs, or material and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

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Both Medicare and private health insurance plans pay for a large portion or sometimes even all costs associated with many types of medical equipment used in the home. This type of equipment is referred to as durable medical equipment or home medical equipment. The guide below will help you understand the Medicare guidelines related to home medical equipment. Most health insurance plans have similar rules to Medicare, but you should know that all private health insurance plans vary and the specific rules of your plan may differ from these Medicare guidelines. We accept most of the major health insurance plans. We would be happy to work with you and your insurance company to help you understand how your plan works as it relates to home medical equipment needed by you or a loved one.

I. Guide to Medicare Coverage

Who qualifies for Medicare benefits?

  • Individuals 65 years of age or older
  • Individuals under 65 with permanent kidney failure (beginning three months after dialysis begins), or
  • Individuals under 65, permanently disabled and entitled to Social Security benefits (beginning 24 months after the start of disability benefits)

The Different Benefits of Traditional Medicare

  • Medicare Part A benefits cover hospital stays, home health care and hospice services
  • Medicare Part B benefits cover physician visits, laboratory tests, ambulance services and home medical equipment
  • While oftentimes you do not have to pay a monthly fee to have Part A benefits (you only have to pay money when you use the services), the Part B program requires a monthly premium to stay enrolled (even if you do not use the services). In 2011 that premium will range between $115.40 - $369.10 per month depending on your income. Typically, this amount will be taken from your Social Security check.
  • Medicare Part D offers optional program benefits that cover prescription drugs.
  • For more information about your benefits or making coverage decisions, you can visit the official website for Medicare benefits at www.medicare.gov.

What Can You Expect to Pay?

  • Every year, in addition to your monthly premium, you will have to pay the first $162 of covered expenses out of pocket for Part B services, and then 20 percent of all approved charges if the provider agrees to accept Medicare payments.
  • Unfortunately, your medical equipment provider cannot automatically waive this 20 percent or your deductible without suffering penalties from Medicare. They must attempt to collect the coinsurance and deductible if those charges are not covered by another insurance plan; however, certain exceptions can be made if you meet qualifying financial hardships established by your provider.
  • If you have a supplemental insurance policy, that plan may pick up this portion of your responsibility after your supplemental plan's deductible has been satisfied.
  • If your medical equipment provider does not accept assignment with Medicare you may be asked to pay the full price up front, but they will file a claim on your behalf to Medicare. In turn, Medicare will process the claim and mail you a check to cover a portion of your expenses if the charges are approved.

Other possible costs:

  • Medicare will pay only for items that meet your basic needs. Oftentimes you will find that your provider offers a wide selection of products that vary slightly in appearance or features. You may decide that you prefer the products that offer these additional features. Your provider should give you the option to allow you to privately pay a little extra money to get the product that you really want.
  • To take advantage of this opportunity, a new form has been approved by the Centers for Medicare and Medicaid Services (CMS) that allows you to upgrade to a piece of equipment that you like better than the other standard option you may otherwise qualify for. This form is known as the Advance Beneficiary Notice or ABN.
  • The ABN your provider completes for you must detail how the products differ, and requires a signature to indicate that you agree to pay the difference in the retail costs between two similar items. Your provider will typically accept assignment on the standard product and apply that cost toward the purchase of the fancier item, thus requiring less money out of your pocket.

Purpose of ABN

  • The Advance Beneficiary Notice of Non Coverage also will be used to notify you ahead of time that Medicare will probably not pay for a certain item or service in a specific situation, even if Medicare might pay under different circumstances. The form should be detailed enough that you understand why Medicare will probably not pay for the item you are requesting.
  • The purpose of the form is to allow you to make an informed decision about whether or not to receive the item or service knowing that you may have additional out-of-pocket expenses.

Durable Medical Equipment (DME) Defined

  • In order for any item to be covered under Medicare, it typically has to meet the test of durability. Medicare will pay for medical equipment when the item:
    • Withstands repeated use (excludes many disposable items such as underpads)
    • Is used for a medical purpose (meaning there is an underlying condition which the item should improve)
    • Is useless in the absence of illness or injury (thus excluding any item preventive in nature such as bathroom safety items used to prevent injuries)
    • Used in the home (which excludes all items that are needed only when leaving the confines of the home setting)

Understanding Assignment (a claim-by-claim contract)

  • When a provider accepts assignment, they are agreeing to accept Medicare's approved amount as payment in full.
  • You will be responsible for 20 percent of that approved amount. This is called your coinsurance.
  • You also will be responsible for the annual deductible, which is $162.00 for 2011.
  • If a provider does not accept assignment with Medicare, you will be responsible for paying the full amount upfront. The provider will still file a claim on your behalf and any reimbursement made by Medicare will be paid to you directly. (Providers must still notify you in advance, using the Advance Beneficiary Notice, if they do not believe Medicare will pay for your claim.)

Mandatory Submission of Claims

  • Every provider is required to submit a claim for covered services within one year from the date of service.

The role of the physician with respect to home medical equipment:

  • Every item billed to Medicare requires a physician's order or a special form called a Certificate of Medical Necessity (CMN), and sometimes additional documentation will be required such as copies of office visit notes from prior visits with your physician or copies of test results relevant to the prescription of your medical equipment.
  • Nurse Practitioners, Physician Assistants, Interns, Residents and Clinical Nurse Specialists can also order medical equipment and sign CMNs when they are treating you.
  • All physicians have the right to refuse to complete documentation for equipment they did not order, so make sure you consult with your physician about your need for medical equipment or supplies before requesting an item from a provider.

Prescriptions Before Delivery:

  • For some items, Medicare requires your provider to have completed documentation (which is more than just a call-in order or a prescription from your doctor) before they can deliver these items to you:
    • Decubitus care (wheelchair cushions and pressure-relieving surfaces placed on a hospital bed)
    • Seat lift mechanisms
    • TENS Units (for pain management)
    • Power Operated Vehicles/Scooters
    • Electric or Power Wheelchairs
    • Negative Pressure Wound Therapy (wound vacs)
  • Your provider cannot deliver these products to you without a written order from your doctor, nor can they get the documentation at a later date because if they do, Medicare can never make payment for those products to you or your provider. So please be patient with your provider while they collect the required documentation from your physician.

How does Medicare pay for and allow you to use the equipment?

  1. Typically there are four ways Medicare will pay for a covered item:
    • Purchase it outright, then the equipment belongs to you,
    • Rent it continuously until it is no longer needed, or
    • Consider it a "capped" rental in which Medicare will rent the item for a total of 13 months and consider the item purchased after having made 13 payments.
      • Medicare will not allow you to purchase these items outright (even if you think you will need it for a long period of time).
      • This is to allow you to spread out your coinsurance instead of paying in one lump sum.
      • It also protects the Medicare program from paying too much should your needs change earlier than expected.
    • If you have oxygen therapy, Medicare will make rental payments for a total of 36 months during which time this fee covers all service and accessories.
      • Beyond the 36 months (for a period of 2 additional years), Medicare will limit payments to a small fee for monthly gas or liquid contents and a limited service fee to check the equipment every six months.
  2. After an item has been purchased for you, you will be responsible for calling your provider anytime that item needs to be serviced or repaired. When necessary, Medicare will pay for a portion of repairs, labor, replacement parts and for temporary loaner equipment to use during the time your product is in for servicing. All of this is contingent on the fact that you still need the item at the time of repair and continue to meet Medicare's coverage criteria for the item being repaired.

In some parts of the country, a new program called Competitive Bidding will require you to obtain certain medical equipment from specific, Medicare-contracted suppliers in order for Medicare to pay. If you are located in a city where the program is in effect, you will need to obtain the following items from a contracted supplier:

  • Oxygen, oxygen equipment, and supplies
  • Standard power wheelchairs, scooters, and related accessories
  • Complex rehabilitative power wheelchairs and related accessories (Group 2 only)
  • Mail-order diabetic supplies
  • Enteral nutrition, equipment, and supplies
  • Continuous Positive Airway Pressure (CPAP) devices and Respiratory Assist Devices (RADs), and related supplies and accessories
  • Hospital beds and related accessories
  • Walkers and related accessories
  • Support surfaces (Group 2 mattresses and overlays in Miami only)

To find out if your zip code is affected by Competitive Bidding, call 1-800-MEDICARE (1-800-633-4227). You may also visit Medicare.gov and lookup suppliers in your area by zip code (a notice will appear if your area is subject to Competitive Bidding). If medical equipment is marked with an orange star, it will need to be provided by a contracted supplier.

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II. Medicare Coverage for Specific Types of Home Medical Equipment

BiLevel Devices/Respiratory Assist Devices

  • For a respiratory assist device to be covered, the treating physician must fully document in your medical record symptoms characteristic of sleep-associated hypoventilation, such as daytime hypersomnolence, excessive fatigue, morning headaches, cognitive dysfunction, dyspnea, etc.
  • A respiratory assist device is covered if you have a clinical disorder characterized as (I) restrictive thoracic disorders (i.e., progressive neuromuscular diseases or severe thoracic cage abnormalities), (II) severe chronic obstructive pulmonary disease (COPD), or (III) central sleep apnea (CSA) or Complex Sleep Apnea (CompSA). If you are diagnosed with Obstructive Sleep Apnea, see the coverage criteria for Positive Airway Pressure Devices below.
  • Various tests may need to be performed to establish one of the above diagnosis groups.
  • Three months after starting your therapy, both you and your physician will be required to respond in writing to questions regarding your continued use along with how well the machine is treating your condition.

Breast Prostheses

  • Breast Prostheses are covered after a radical mastectomy. Medicare will cover:
    • One silicone prosthesis every two years or a mastectomy form every six months.
    • As an alternative, Medicare can cover a nipple prosthesis every three months.
    • Mastectomy bras are covered as needed.
  • There is no coverage for replacement prostheses due to wear and tear before the specified time frames. However, Medicare will cover replacement of these items due to:
    • Loss
    • Irreparable damage, or
    • Change in medical condition (e.g. significant weight gain/loss)
  • You are allowed only one prosthesis per affected side, others will be denied as not medically necessary even if attempting asymmetry (an ABN should be provided in this circumstance).
  • Mastectomy sleeves which are used to control swelling are not covered in the home setting because they do not meet Medicare's definition of a prosthesis; however, it is possible that they may be covered under the hospital per diem if you request one during your hospital stay.
  • A mastectomy bra is covered if the pocket of the bra is used to hold a covered prosthesis or mastectomy form.

Cervical Traction

  • Cervical traction devices are covered only if both of the criteria below are met:
    1. You have a musculoskeletal or neurologic impairment requiring traction equipment.
    2. The appropriate use of a home cervical traction device has been demonstrated to you and you are able to tolerate the selected device.

Commodes

  • A commode is only covered when you are physically incapable of utilizing regular toilet facilities. For example:
    1. You are confined to a single room, or
    2. You are confined to one level of the home environment and there is no toilet on that level, or
    3. You are confined to the home and there are no toilet facilities in the home.
  • Heavy-duty commodes are covered if you weigh over 300 pounds. Commodes with detachable arms are covered if your body configuration requires extra width, or if the arms are needed to transfer in and out of the chair.

Compression Stockings

  • Gradient compression stockings worn below the knee are covered only when used for the treatment of open venous stasis ulcers. They are not covered for the prevention of ulcers, prevention of the reoccurrence of ulcers, or treatment of lymphedema or swelling without ulcers.

Positive Airway Pressure Devices (CPAPs and Bi-Level Devices for Obstructive Sleep Apnea)

  • Continuous Positive Airway Pressure (CPAP) Devices are covered only if you have obstructive sleep apnea (OSA).
  • You must have an overnight sleep study performed in a sleep laboratory or through a special, in-home sleep test to establish a qualifying diagnosis of Obstructive Sleep Apnea.
  • Medicare will also pay for replacement masks, tubing and other necessary supplies.
  • After the first three months of use, you will be required to verify if you are benefiting from using the device and how many hours a day you are using the machine. Per Medicare, a face-to-face visit with your physician that documents an improvement of your symptoms is required no sooner than 31 days and no later than 91 days from the set-up date. A data report from your sleep equipment which documents that the PAP has been used for at least 4 hours per night on 70% of nights during a 30-day consecutive period is required.
  • If the CPAP device is not working, or if you cannot tolerate the CPAP machine, your doctor may also try to use a different device called a Bi-Level or a Respiratory Assist device, and Medicare can consider this for coverage as well.
  • Talk with your provider if you are having problems adjusting to the therapy. There are a lot of variations that can make the therapy more comfortable for you.

Diabetic Supplies

  • For diabetics, Medicare covers the glucose monitor, lancets, spring-powered lancing devices, test strips, control solution and replacement batteries for the meter.
  • Medicare does not cover insulin injections or diabetic pills unless covered through a Medicare Part D benefit plan.
  • Diabetics can obtain up to a three month supply of testing materials at a time.
  • Medicare will approve up to one test per day for non-insulin dependent diabetics and three tests per day for insulin-dependent diabetics without additional verification of need.
    • If you test above these guidelines, you are required to be seen and evaluated by your physician within six months prior to receiving your initial supplies from your provider.
    • In addition, you must send your provider evidence of compliant testing (e.g. a testing log) every six months to continue getting refills at the higher levels.
  • If at any time your testing frequency changes, your physician will need to give your provider a new prescription.

Glasses

  • Medicare covers one complete pair of glasses after the last cataract surgery. These can include:
    • frames
    • two lenses
    • tint, anti-reflective coating, and/or UV (when the doctor specifically orders these services for a medical need)

Hospital Beds

  • A hospital bed is covered if one or more of the following criteria (1-4) are met:
    1. You have a medical condition which requires positioning of the body in ways not feasible with an ordinary bed. Elevation of the head/upper body less than 30 degrees does not usually require the use of a hospital bed, or
    2. You require positioning of the body in ways not feasible with an ordinary bed in order to alleviate pain, or
    3. You require the head of the bed to be elevated more than 30 degrees most of the time due to congestive heart failure, chronic pulmonary disease, or problems with aspiration. Pillows or wedges must have been considered and ruled out, or
    4. You require traction equipment which can only be attached to a hospital bed.
  • Specialty beds that allow the height of the bed to vary are covered if you require this feature to permit transfers to a chair, wheelchair or standing position.
  • A semi-electric bed is covered if you require frequent changes in body position and/or have an immediate need for a change in body position.
  • Heavy-duty/extra-wide beds can be covered if you weigh over 350 pounds.
  • The total electric bed is not covered because it is considered a convenience feature. If you prefer to have the total electric feature, your provider usually can apply the cost of the semi-electric bed toward the monthly rental price of the total electric model. You will need to sign an Advance Beneficiary Notice (ABN)and will be responsible to pay the difference in the retail charges between the two items every month.

Lymphedema Pumps

  • Lymphedema Pumps are covered for treatment of true lymphedema as a result of a:
    • Primary Lymphedema resulting from a congenital abnormality of lymphatic drainage or Milroy's disease, or
    • Secondary lymphedema resulting from the destruction of or damage to formerly functioning lymphatic channels such as:
      • radical surgical procedures with removal of regional groups of lymph nodes (for example, after radical mastectomy),
      • post-radiation fibrosis,
      • spread of malignant tumors to regional lymph nodes with lymphatic obstruction,
      • or other causes
    • Before you can be prescribed a pump, your physician must monitor you during a four-week trial period where other treatment options are tried such as medication, limb elevation and compression garments. If, at the end of the trial, there is little or no improvement, a lymphedema pump can be considered.
    • The doctor must then document an initial treatment with a pump and establish that the treatment can be tolerated.
  • Lymphedema pumps also are covered for the treatment of chronic venus insufficiency (CVI).
    • Before you can be prescribed a pump for this condition, your physician must monitor you during a six month trial period where other treatment options are tried such as medication, limb elevation and compression garments. If at the end of the trial the stasis ulcers are still present, a lymphedema pump can be considered.
    • The doctor must then document an initial treatment with a pump and establish that the treatment can be tolerated, that there is a caregiver available to assist with the treatment in the home, and then the doctor must prescribe the pressures, frequency, and duration of prescribed use.

Medicare-covered drugs (other than Medicare Part D coverage)

  • As of February 2001, all providers of Medicare-covered drugs are required to accept assignment on these items.
  • Traditional Medicare Part B insurance will cover some nebulizer drugs, some infused drugs that require the use of a pump, specific immunosuppressive drugs, select oral anti-cancer medications and most parenteral nutrition.
  • The Medicare Part D plans may provide additional coverage of other oral medications, inhalers and similar drugs.

Mobility Products: Canes, Walkers, Wheelchairs, and Scooters

  • Essentially the new Mobility Assistive Equipment regulations will ensure that Medicare funds are used to pay for:
    • Mobility needs for daily activities within the home
    • The lowest level of equipment required to accomplish these tasks.
    • The most medically appropriate equipment (that meets your needs, not your wants)
  • Medicare requires that your physician and provider evaluate your needs and expected use of the mobility product you will qualify for.
  • They must determine which is the least level of equipment needed to help you be mobile within your home to accomplish daily activities by asking the following questions:
    • Will a cane or crutches allow you to perform these activities in the home?
    • If not, will a walker allow you to accomplish these activities in the home?
    • If not, is there any type of manual wheelchair that will allow you to accomplish these activities in the home?
    • If not, will a scooter allow you to accomplish these activities in the home?
    • If not, will a power chair allow you to accomplish these activities in the home?
  • Keep in mind if you have another higher level product in mind that will allow you to do more beyond the confines of the home setting, you can discuss with your provider the option to upgrade to a higher level or more comfortable product by paying an additional out of pocket fee using the Advance Beneficiary Notice (ABN).
  • A face-to-face examination with your physician to specifically discuss your mobility limitations and need for powered mobility is required prior to the initial setup of a power chair or scooter.
  • Your home must be evaluated to ensure it will accommodate the use of any mobility product.
  • You may also be asked to see a physical therapist or occupational therapist to determine the best fit and equipment selection.

Nebulizers

  • Nebulizer machines, medications and related accessories are usually covered if you have obstructive pulmonary disease, but can also be covered to deliver specific medications if you have HIV, Cystic Fibrosis, brochiectasis, pneumocystosis, complications of organ transplants, or for persistent thick or tenacious pulmonary secretions.
  • You may obtain up to a three month's supply of nebulizer medications and accessories at a time as long as you continue to regularly use the medications through your machine.
  • If at any time you stop using your medications, please notify your provider.

Non-covered items (partial listing):

  • Adult Diapers
  • Bathroom Safety Equipment
  • Hearing Aides
  • Syringes/Needles
  • Van Lifts or Ramps
  • Exercise Equipment
  • Humidifiers/Air Purifiers
  • Raised Toilet Seats
  • Massage Devices
  • Stair Lifts
  • Emergency Communicators
  • Low Vision Aides
  • Grab Bars
  • Elastic Garments

Orthopedic Shoes

  • Orthopedic shoes are covered when it is necessary to attach the shoe(s) to a leg brace.
  • Medicare will only pay for the shoe(s) attached to leg brace(s).
  • Medicare will not pay for matching shoes or for shoes that are needed for purposes other than for diabetes or leg braces.

Ostomy Supplies

  • Ostomy supplies are covered for people with a:
    • colostomy,
    • ileostomy, or
    • urostomy
  • You may obtain up to a three month's supply of wafers, pouches, paste and other necessary items at a time.

Oxygen

  • Oxygen is covered if you have significant hypoxemia in a chronic stable state when:
    • You have a severe lung disease or hypoxemia that might be expected to improve with oxygen therapy, and
    • Your blood gas levels or oxygen saturation levels indicate the need for oxygen therapy, and
    • Your oxygen study was performed by a qualifying physician or sleep lab, and
    • Alternative treatments have been tried or deemed clinically ineffective.
  • Categories/Groups are based on the test results to measure your oxygen:
    • Group I Criteria: mmHG = 55, or saturation = 88%
    • For these results you must return to your physician between 9-12 months after the initial visit to discuss whether your oxygen therapy should continue for lifetime or for a shorter period if the need is expected to end. Typically, you will not have to be retested when you return to your physician for the follow-up visit.
    • Group II Criteria: 56-59 mmHg, or 89% saturation
    • For these results, you must return for another office visit with your physician to discuss your oxygen therapy and you will also have to be retested within 3 months of the first test to continue therapy for lifetime or until the need is expected to end.
    • Group III Criteria: mmHg = 60 or saturation = 90% is considered to be not medically necessary.

Oxygen will be paid as a rental for the first 36 months. After that time, if you still need the equipment, Medicare will no longer make rental payments on the equipment. However, if equipment is still necessary, your provider will continue to provide the equipment to you for an additional 24 months. During this two year service period, Medicare will pay your provider for refilling your oxygen cylinders and for a semi-annual maintenance fee.

After 60 months of service through Medicare you may choose to receive new equipment.

Parenteral and Enteral Therapy

  • Parenteral therapy requires all or part of the gastrointestinal tract to be missing. Nutritional formulas are delivered through a vein.
  • Enteral therapy is covered if you cannot swallow or take food orally. Nutrition must be delivered through a tube directly into the gastrointestinal tract.
  • Medicare will not pay for nutritional formulas that are taken orally.
  • Specialty nutrients/formulations can be covered if you have unique nutrient needs or specific disease conditions which are well documented in your physician's records. In some cases you may have to try standard formulas and document that they are unsuccessful before you can receive the specialty nutrients.

Patient Lifts

  • A lift is covered if transfer between a bed and a chair, wheelchair, or commode requires the assistance of more than one person and, if without the use of a lift, you would be bed confined.
  • An electric lift mechanism is not covered; because it is considered a convenience feature. If you prefer to have the electric mechanism, your provider can usually apply the cost of the manual lift toward the purchase price of the electric model. You will need to sign an Advance Beneficiary Notice (ABN) and would be responsible to pay the difference in the retail charges between the two items on a monthly basis.
  • Patient lifts are a capped rental item, and that means they cannot be purchased outright. You will own the equipment after Medicare makes 13 payments toward the purchase of the equipment.

Seat Lift Mechanisms

  • In order for Medicare to pay for a seat lift mechanism, you must be suffering from severe arthritis of the hip or knee, or have a severe neuromuscular disease. In addition you must be completely incapable of standing up from any chair, but once standing can walk either independently or with the aid of a walker or cane. The physician must believe that the mechanism will improve, slow down or stop the deterioration of your condition.
  • Transferring directly into a wheelchair will prevent Medicare from paying for the device.
  • Medicare will only pay for the lift mechanism portion. The chair portion of the package is not covered, and you will be responsible for paying the full amount for the furniture component of the chair.
  • Your provider cannot deliver this product to you without a written order or certificate of medical necessity from your doctor, nor can they get the documentation at a later date because if they do, Medicare can never make payment for those products to you or your provider. So please be patient with your provider while they collect the required documentation from your physician.

Support Surfaces

  • Group 1 products are designed to be placed on top of a standard hospital bed or home mattresses. They can utilize gel, foam, water or air, and are covered if you are:
    • Completely immobile OR
    • Have limited mobility or any stage ulcer on the trunk or pelvis (and one of the following):
      • impaired nutritional status
      • fecal or urinary incontinence
      • altered sensory perception
      • compromised circulatory status
  • Group 2 products take many forms, but are typically powered pressure reducing mattresses or overlays. They are covered if you have one of three conditions:
    • Multiple stage II ulcers on the pelvis or trunk while on a comprehensive treatment program for at least a month using a Group 1 product, and at the close of that month, the ulcers worsened or remained the same. (Monthly follow-up is required by a clinician to ensure that the treatment program is modified and followed. This product is only covered while ulcers are still present.) OR
    • Large or multiple Stage III or IV ulcers on the trunk or pelvis (Monthly follow-up is required by a clinician to ensure that the treatment program is modified and followed. This product is only covered while ulcers are still present.) OR
    • A recent myocutaneous flap or skin graft for an ulcer on the trunk or pelvis within the last 60 days where you were immediately placed on Group 2 or 3 support surface prior to discharge from the hospital and you have been discharged within the last 30 days.
  • A physician or healthcare professional must make monthly assessments as to whether continued use of the equipment is required. Sometimes your physician may order a home healthcare nurse to come visit you to make these assessments.
  • Group 3 products are air-fluidized beds and are only covered if you meet ALL of the following conditions:
    • A stage III or stage IV pressure ulcer, and
    • Are bedridden or chair bound as the result of limited mobility, and
    • In the absence of an air-fluidized bed would require institutionalization, and
    • An alternate course of conservative treatment has been tried for at least one month without improvement of the wound, and
    • All other alternative equipment has been considered and ruled out.
  • A physician or healthcare professional must assess and evaluate you after completion of a course of conservative therapy within one month prior to ordering the Group 3 support surface.
  • A trained adult caregiver must be available to assist you. Medicare does not cover the cost of hiring a caregiver, or for structural modifications to your home to accommodate this equipment.
  • Your provider cannot deliver these products to you without a written order from your doctor, nor can they get the documentation at a later date because if they do, Medicare can never make payment for those products to you or your provider. So please be patient with your provider while they collect the required documentation from your physician.

TENS Units

  • TENS units are covered for the treatment of chronic intractable pain that has been present for at least three months or more, and in some cases for acute post-operative pain.
  • Not all types of pain can be treated with a TENS unit. TENS units have been proven ineffective in treating headaches, visceral abdominal pain, pelvic pain, and TMJ pain, and therefore Medicare will not pay for the device when used to treat these conditions.
  • For chronic pain sufferers that have had persistent pain for three or more months in duration, Medicare will pay for a one or two month trial rental to determine if this device will help or alleviate the chronic pain. You must return to your physician exactly 30-60 days after initial evaluation to discuss how the therapy is working and to authorize the purchase of this equipment.
  • For acute, post-operative pain sufferers, Medicare will consider rental payment for a maximum of 30 days. Any duration longer than that will require individual consideration.
  • Your provider cannot deliver this product to you without a written order or certificate of medical necessity from your doctor, nor can they get the documentation at a later date because if they do, Medicare can never make payment for those products to you or your provider. So please be patient with your provider while they collect the required documentation from your physician.

Therapeutic Shoes

  • Special therapeutic shoes, inserts and modifications can be covered for diabetic patients with the following foot conditions:
    • previous amputation of a foot or partial foot
    • history of foot ulceration
    • peripheral neuropathy with callus formation
    • foot deformity
    • poor circulation in either foot
  • You must have an office visit with your physician within six months of receiving new shoes to discuss and document your diabetes management and why you need these special shoes. This office visit must be repeated each time you wish to obtain replacement shoes.
  • When providing you with shoes, your provider must perform an in-person evaluation of your foot/feet, and must verify that your shoes fit properly.
  • Your provider cannot deliver this product to you without a written order or certificate of medical necessity from your doctor, nor can they get the documentation at a later date because if they do, Medicare can never make payment for those products to you or your provider. So please be patient with your provider while they collect the required documentation from your physician.

Urological Supplies

  • Urinary catheters and external urinary collection devices are covered to drain or collect urine if you have permanent urinary incontinence or permanent urinary retention. Permanent urinary retention is defined as retention that is not expected to be medically or surgically corrected within 3 months.
  • A maximum of six catheters may be used per day (up to 200 per month), unless it is determined that a higher number is medically necessary by your physician, and these unique circumstances are specifically documented in your medical records.
  • When at home, you may receive up to a 3-month supply at one time.

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III. Medicare Supplier Standards

Below is a summary of the standards Medicare requires of home medical equipment providers. Our company meets or exceeds all of these standards.

  1. A supplier must be in compliance with all applicable Federal and State licensure and regulatory requirements and cannot contract with an individual or entity to provide licensed services.
  2. A supplier must provide complete and accurate information on the DMEPOS supplier application. Any changes to this information must be reported to the National Supplier Clearinghouse within 30 days.
  3. An authorized individual (one whose signature is binding) must sign the application for billing privileges.
  4. A supplier must fill orders from its own inventory, or must contract with other companies for the purchase of items necessary to fill the order. A supplier may not contract with any entity that is currently excluded from the Medicare program, any State health care programs, or from any other Federal procurement or non-procurement programs.
  5. A supplier must advise beneficiaries that they may rent or purchase inexpensive or routinely purchased durable medical equipment, and of the purchase option for capped rental equipment.
  6. A supplier must notify beneficiaries of warranty coverage and honor all warranties under applicable State law, and repair or replace free of charge Medicare covered items that are under warranty.
  7. A supplier must maintain a physical facility on an appropriate site. This standard requires that the location is accessible to the public and staffed during posted hours of business. The location must be at least 200 square feet and contain space for storing records.
  8. A supplier must permit CMS, or its agents to conduct on-site inspections to ascertain the supplier's compliance with these standards. The supplier location must be accessible to beneficiaries during reasonable business hours, and must maintain a visible sign and posted hours of operation.
  9. A supplier must maintain a primary business telephone listed under the name of the business in a local directory or a toll free number available through directory assistance. The exclusive use of a beeper, answering machine, answering service or cell phone during posted business hours is prohibited.
  10. A supplier must have comprehensive liability insurance in the amount of at least $300,000 that covers both the supplier's place of business and all customers and employees of the supplier. If the supplier manufactures its own items, this insurance must also cover product liability and completed operations.
  11. A supplier must agree not to initiate telephone contact with beneficiaries, with a few exceptions allowed. This standard prohibits suppliers from contacting a Medicare beneficiary based on a physician's oral order unless an exception applies.
  12. A supplier is responsible for delivery and must instruct beneficiaries on use of Medicare covered items, and maintain proof of delivery.
  13. A supplier must answer questions and respond to complaints of beneficiaries, and maintain documentation of such contacts.
  14. A supplier must maintain and replace at no charge or repair directly, or through a service contract with another company, Medicare-covered items it has rented to beneficiaries.
  15. A supplier must accept returns of substandard (less than full quality for the particular item) or unsuitable items (inappropriate for the beneficiary at the time it was fitted and rented or sold) from beneficiaries.
  16. A supplier must disclose these supplier standards to each beneficiary to whom it supplies a Medicare-covered item.
  17. A supplier must disclose to the government any person having ownership, financial, or control interest in the supplier.
  18. A supplier must not convey or reassign a supplier number; i.e., the supplier may not sell or allow another entity to use its Medicare billing number.
  19. A supplier must have a complaint resolution protocol established to address beneficiary complaints that relate to these standards. A record of these complaints must be maintained at the physical facility.
  20. Complaint records must include: the name, address, telephone number and health insurance claim number of the beneficiary, a summary of the complaint, and any actions taken to resolve it.
  21. A supplier must agree to furnish CMS any information required by the Medicare statute and implementing regulations.
  22. All suppliers must be accredited by a CMS-approved accreditation organization in order to receive and retain a supplier billing number. The accreditation must indicate the specific products and services, for which the supplier is accredited in order for the supplier to receive payment of those specific products and services (except for certain exempt pharmaceuticals). Implementation Date - October 1, 2009
  23. All suppliers must notify their accreditation organization when a new DMEPOS location is opened.
  24. All supplier locations, whether owned or subcontracted, must meet the DMEPOS quality standards and be separately accredited in order to bill Medicare.
  25. All suppliers must disclose upon enrollment all products and services, including the addition of new product lines for which they are seeking accreditation.
  26. Must meet the surety bond requirements specified in 42 C.F.R. 424.57(c). Implementation Date - May 4, 2009
  27. A supplier must obtain oxygen from a state- licensed oxygen supplier.
  28. A supplier must maintain ordering and referring documentation consistent with provisions found in 42 C.F.R. 424.516(f).
  29. DMEPOS suppliers are prohibited from sharing a practice location with certain other Medicare providers and suppliers.
  30. DMEPOS suppliers must remain open to the public for a minimum of 30 hours per week with certain exceptions.

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The Internet is a great source of information for you to use in managing your healthcare or the healthcare of a loved one. It can also be good way to locate the support resources you need as a patient or caregiver. Below is a list of links which we hope will help you find the information and support you need. Please call our office directly if we can be of any assistance to you. When in need of outside help, a local information/referral service can be very useful. Even if they don't have the specific information you're looking for they most likely will know where you can get it. The yellow pages of your phone book should have a guide to local service agencies listed in the Human Services section. If you're unable to find a Human Service guide, or the specific service you're looking for, call the local service of a national service organization and explain your problem. They should be able to direct you to the right place.

Healthcare Resource Sites:

Health Conditions and Organizations:

Government and Social Services:


Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations, and prevention tips for patients and caregivers.
Alzheimers Diabetes Osteoporosis
Asthma Epilepsy/Sezures Parkinson's Disease
Breast Cancer Hepatitis C Sleep Apnea
CHF Multiple Sclerosis Urinary Incontinence
COPD Muscular Dystrophy Wound Care
Cystic Fibrosis Obesity  
     

 

Help for Patients and Caregivers : Seizures and Epilepsy

Few experiences match the drama of a convulsive seizure. A person having a severe seizure may cry out, fall to the floor unconscious, twitch or move uncontrollably, drool, or even lose bladder control. Within minutes, the attack is over, and the person regains consciousness but is exhausted and dazed. This is the image most people have when they hear the word epilepsy. However, this type of seizure -- a generalized tonic-clonic seizure -- is only one kind of epilepsy. There are many other kinds, each with a different set of symptoms.

Epilepsy was one of the first brain disorders to be described. It was mentioned in ancient Babylon more than 3,000 years ago. The strange behavior caused by some seizures has contributed through the ages to many superstitions and prejudices. The word epilepsy is derived from the Greek word for "attack." People once thought that those with epilepsy were being visited by demons or gods. However, in 400 B.C., the early physician Hippocrates suggested that epilepsy was a disorder of the brain -- and we now know that he was right.

What is Epilepsy?
What Causes Epilepsy?
What Are the Different Kinds of Seizures?
What Are the Different Kinds of Epilepsy?
When Are Seizures Not Epilepsy?
How is Epilepsy Diagnosed?
Can Epilepsy be Prevented?
How can Epilepsy be Treated?
What To Do If You See Someone Having a Seizure

Where can I get more information?


 

What is Epilepsy?

Epilepsy is a brain disorder in which clusters of nerve cells, or neurons, in the brain sometimes signal abnormally. Neurons normally generate electrochemical impulses that act on other neurons, glands, and muscles to produce human thoughts, feelings, and actions. In epilepsy, the normal pattern of neuronal activity becomes disturbed, causing strange sensations, emotions, and behavior, or sometimes convulsions, muscle spasms, and loss of consciousness. During a seizure, neurons may fire as many as 500 times a second, much faster than the normal rate of about 80 times a second. In some people, this happens only occasionally; for others, it may happen up to hundreds of times a day.

More than 2 million people in the United States -- about 1 in 100 -- have experienced an unprovoked seizure or been diagnosed with epilepsy. For about 80 percent of those diagnosed with epilepsy, seizures can be controlled with modern medicines and surgical techniques. However, about 20 percent of people with epilepsy will continue to experience seizures even with the best available treatment. Doctors call this situation intractable epilepsy. Having a seizure does not necessarily mean that a person has epilepsy. Only when a person has had two or more seizures is he or she considered to have epilepsy.

Epilepsy is not contagious and is not caused by mental illness or mental retardation. Some people with mental retardation may experience seizures, but seizures do not necessarily mean the person has or will develop mental impairment. Many people with epilepsy have normal or above-average intelligence. Famous people who are known or rumored to have had epilepsy include the Russian writer Dostoyevsky, the philosopher Socrates, the military general Napoleon, and the inventor of dynamite, Alfred Nobel, who established the Nobel Prize. Several Olympic medalists and other athletes also have had epilepsy. Seizures sometimes do cause brain damage, particularly if they are severe. However, most seizures do not seem to have a detrimental effect on the brain. Any changes that do occur are usually subtle, and it is often unclear whether these changes are caused by the seizures themselves or by the underlying problem that caused the seizures.

While epilepsy cannot currently be cured, for some people it does eventually go away. One study found that children with idiopathic epilepsy, or epilepsy with an unknown cause, had a 68 to 92 percent chance of becoming seizure-free by 20 years after their diagnosis. The odds of becoming seizure-free are not as good for adults or for children with severe epilepsy syndromes, but it is nonetheless possible that seizures may decrease or even stop over time. This is more likely if the epilepsy has been well-controlled by medication or if the person has had epilepsy surgery.

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What Causes Epilepsy?

Epilepsy is a disorder with many possible causes. Anything that disturbs the normal pattern of neuron activity -- from illness to brain damage to abnormal brain development -- can lead to seizures.

Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve signaling chemicals called neurotransmitters, or some combination of these factors. Researchers believe that some people with epilepsy have an abnormally high level of excitatory neurotransmitters that increase neuronal activity, while others have an abnormally low level of inhibitory neurotransmitters that decrease neuronal activity in the brain. Either situation can result in too much neuronal activity and cause epilepsy. One of the most-studied neurotransmitters that plays a role in epilepsy is GABA, or gamma-aminobutyric acid, which is an inhibitory neurotransmitter. Research on GABA has led to drugs that alter the amount of this neurotransmitter in the brain or change how the brain responds to it. Researchers also are studying excitatory neurotransmitters such as glutamate.

In some cases, the brain's attempts to repair itself after a head injury, stroke, or other problem may inadvertently generate abnormal nerve connections that lead to epilepsy. Abnormalities in brain wiring that occur during brain development also may disturb neuronal activity and lead to epilepsy.

Research has shown that the cell membrane that surrounds each neuron plays an important role in epilepsy. Cell membranes are crucial for a neuron to generate electrical impulses. For this reason, researchers are studying details of the membrane structure, how molecules move in and out of membranes, and how the cell nourishes and repairs the membrane. A disruption in any of these processes may lead to epilepsy. Studies in animals have shown that, because the brain continually adapts to changes in stimuli, a small change in neuronal activity, if repeated, may eventually lead to full-blown epilepsy. Researchers are investigating whether this phenomenon, called kindling, may also occur in humans.

In some cases, epilepsy may result from changes in non-neuronal brain cells called glia. These cells regulate concentrations of chemicals in the brain that can affect neuronal signaling.

About half of all seizures have no known cause. However, in other cases, the seizures are clearly linked to infection, trauma, or other identifiable problems.

Genetic Factors

Research suggests that genetic abnormalities may be some of the most important factors contributing to epilepsy. Some types of epilepsy have been traced to an abnormality in a specific gene. Many other types of epilepsy tend to run in families, which suggests that genes influence epilepsy. Some researchers estimate that more than 500 genes could play a role in this disorder. However, it is increasingly clear that, for many forms of epilepsy, genetic abnormalities play only a partial role, perhaps by increasing a person's susceptibility to seizures that are triggered by an environmental factor.

Several types of epilepsy have now been linked to defective genes for ion channels, the "gates" that control the flow of ions in and out of cells and regulate neuron signaling. Another gene, which is missing in people with progressive myoclonus epilepsy, codes for a protein called cystatin B. This protein regulates enzymes that break down other proteins. Another gene, which is altered in a severe form of epilepsy called LaFora's disease, has been linked to a gene that helps to break down carbohydrates.

While abnormal genes sometimes cause epilepsy, they also may influence the disorder in subtler ways. For example, one study showed that many people with epilepsy have an abnormally active version of a gene that increases resistance to drugs. This may help explain why anticonvulsant drugs do not work for some people. Genes also may control other aspects of the body's response to medications and each person's susceptibility to seizures, or seizure threshold. Abnormalities in the genes that control neuronal migration -- a critical step in brain development -- can lead to areas of misplaced or abnormally formed neurons, or dysplasia, in the brain that can cause epilepsy. In some cases, genes may contribute to development of epilepsy even in people with no family history of the disorder. These people may have a newly developed abnormality, or mutation, in an epilepsy-related gene.

Other Disorders

In many cases, epilepsy develops as a result of brain damage from other disorders. For example, brain tumors, alcoholism, and Alzheimer's disease frequently lead to epilepsy because they alter the normal workings of the brain. Strokes, heart attacks, and other conditions that deprive the brain of oxygen also can cause epilepsy in some cases. About 32 percent of all cases of newly developed epilepsy in elderly people appears to be due to cerebrovascular disease, which reduces the supply of oxygen to brain cells. Meningitis, AIDS, viral encephalitis, and other infectious diseases can lead to epilepsy, as can hydrocephalus -- a condition in which excess fluid builds up in the brain. Epilepsy also can result from intolerance to wheat gluten (also known as celiac disease), or from a parasitic infection of the brain called neurocysticercosis. Seizures may stop once these disorders are treated successfully. However, the odds of becoming seizure-free after the primary disorder is treated are uncertain and vary depending on the type of disorder, the brain region that is affected, and how much brain damage occurred prior to treatment.

Epilepsy is associated with a variety of developmental and metabolic disorders, including cerebral palsy, neurofibromatosis, pyruvate dependency, tuberous sclerosis, Landau-Kleffner syndrome, and autism. Epilepsy is just one of a set of symptoms commonly found in people with these disorders.

Head Injury

In some cases, head injury can lead to seizures or epilepsy. Safety measures such as wearing seat belts in cars and using helmets when riding a motorcycle or playing competitive sports can protect people from epilepsy and other problems that result from head injury.

Prenatal Injury and Developmental Problems

The developing brain is susceptible to many kinds of injury. Maternal infections, poor nutrition, and oxygen deficiencies are just some of the conditions that may take a toll on the brain of a developing baby. These conditions may lead to cerebral palsy, which often is associated with epilepsy, or they may cause epilepsy that is unrelated to any other disorders. About 20 percent of seizures in children are due to cerebral palsy or other neurological abnormalities. Abnormalities in genes that control development also may contribute to epilepsy. Advanced brain imaging has revealed that some cases of epilepsy that occur with no obvious cause may be associated with areas of dysplasia in the brain that probably develop before birth.

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What Are the Different Kinds of Seizures?

Doctors have described more than 30 different types of seizures. Seizures are divided into two major categories -- focal seizures and generalized seizures. However, there are many different types of seizures in each of these categories.

Focal Seizures

Focal seizures, also called partial seizures, occur in just one part of the brain. About 60 percent of people with epilepsy have focal seizures. These seizures are frequently described by the area of the brain in which they originate. For example, someone might be diagnosed with focal frontal lobe seizures.

In a simple focal seizure, the person will remain conscious but experience unusual feelings or sensations that can take many forms. The person may experience sudden and unexplainable feelings of joy, anger, sadness, or nausea. He or she also may hear, smell, taste, see, or feel things that are not real.

In a complex focal seizure, the person has a change in or loss of consciousness. His or her consciousness may be altered, producing a dreamlike experience. People having a complex focal seizure may display strange, repetitious behaviors such as blinks, twitches, mouth movements, or even walking in a circle. These repetitious movements are called automatisms. More complicated actions, which may seem purposeful, can also occur involuntarily. Patients may also continue activities they started before the seizure began, such as washing dishes in a repetitive, unproductive fashion. These seizures usually last just a few seconds.

Some people with focal seizures, especially complex focal seizures, may experience auras -- unusual sensations that warn of an impending seizure. These auras are actually simple focal seizures in which the person maintains consciousness. The symptoms an individual person has, and the progression of those symptoms, tend to be stereotyped, or similar every time.

The symptoms of focal seizures can easily be confused with other disorders. For instance, the dreamlike perceptions associated with a complex focal seizure may be misdiagnosed as migraine headaches, which also may cause a dreamlike state. The strange behavior and sensations caused by focal seizures also can be istaken for symptoms of narcolepsy, fainting, or even mental illness. It may take many tests and careful monitoring by an experienced physician to tell the difference between epilepsy and other disorders.

Generalized Seizures

Generalized seizures are a result of abnormal neuronal activity on both sides of the brain. These seizures may cause loss of consciousness, falls, or massive muscle spasms.

There are many kinds of generalized seizures. In absence seizures, the person may appear to be staring into space and/or have jerking or twitching muscles. These seizures are sometimes referred to as petit mal seizures, which is an older term. Tonic seizures cause stiffening of muscles of the body, generally those in the back, legs, and arms. Clonic seizures cause repeated jerking movements of muscles on both sides of the body. Myoclonic seizures cause jerks or twitches of the upper body, arms, or legs. Atonic seizures cause a loss of normal muscle tone. The affected person will fall down or may drop his or her head involuntarily. Tonic-clonic seizures cause a mixture of symptoms, including stiffening of the body and repeated jerks of the arms and/or legs as well as loss of consciousness. Tonic-clonic seizures are sometimes referred to by an older term: grand mal seizures.

Not all seizures can be easily defined as either focal or generalized. Some people have seizures that begin as focal seizures but then spread to the entire brain. Other people may have both types of seizures but with no clear pattern.

Society's lack of understanding about the many different types of seizures is one of the biggest problems for people with epilepsy. People who witness a non-convulsive seizure often find it difficult to understand that behavior which looks deliberate is not under the person's control. In some cases, this has led to the affected person being arrested oradmitted to a psychiatric hospital. To combat these problems, people everywhere need to understand the many different types of seizures and how they may appear.

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What Are the Different Kinds of Epilepsy?

Just as there are many different kinds of seizures, there are many different kinds of epilepsy. Doctors have identified hundreds of different epilepsy syndromes -- disorders characterized by a specific set of symptoms that include epilepsy. Some of these syndromes appear to be hereditary. For other syndromes, the cause is unknown. Epilepsy syndromes are frequently described by their symptoms or by where in the brain they originate. People should discuss the implications of their type of epilepsy with their doctors to understand the full range of symptoms, the possible treatments, and the prognosis.

People with absence epilepsy have repeated absence seizures that cause momentary lapses of consciousness. These seizures almost always begin in childhood or adolescence, and they tend to run in families, suggesting that they may be at least partially due to a defective gene or genes. Some people with absence seizures have purposeless movements during their seizures, such as a jerking arm or rapidly blinking eyes. Others have no noticeable symptoms except for brief times when they are "out of it." Immediately after a seizure, the person can resume whatever he or she was doing. However, these seizures may occur so frequently that the person cannot concentrate in school or other situations. Childhood absence epilepsy usually stops when the child reaches puberty. Absence seizures usually have no lasting effect on intelligence or other brain functions.

Temporal lobe epilepsy, or TLE, is the most common epilepsy syndrome with focal seizures. These seizures are often associated with auras. TLE often begins in childhood. Research has shown that repeated temporal lobe seizures can cause a brain structure called the hippocampus to shrink over time. The hippocampus is important for memory and learning. While it may take years of temporal lobe seizures for measurable hippocampal damage to occur, this finding underlines the need to treat TLE early and as effectively as possible.

Neocortical epilepsy is characterized by seizures that originate from the brain's cortex, or outer layer. The seizures can be either focal or generalized. They may include strange sensations, visual hallucinations, emotional changes, muscle spasms, convulsions, and a variety of other symptoms, depending on where in the brain the seizures originate.

There are many other types of epilepsy, each with its own characteristic set of symptoms. Many of these, including Lennox-Gastaut syndrome and Rasmussen's encephalitis, begin in childhood. Children with Lennox-Gastaut syndrome have severe epilepsy with several different types of seizures, including atonic seizures, which cause sudden falls and are also called drop attacks. This severe form of epilepsy can be very difficult to treat effectively. Rasmussen's encephalitis is a progressive type of epilepsy in which half of the brain shows continual inflammation. It sometimes is treated with a radical surgical procedure called hemispherectomy (see the section on Surgery). Some childhood epilepsy syndromes, such as childhood absence epilepsy, tend to go into remission or stop entirely during adolescence, whereas other syndromes such as juvenile myoclonic epilepsy and Lennox-Gastaut syndrome are usually present for life once they develop. Seizure syndromes do not always appear in childhood, however.

Epilepsy syndromes that are easily treated, do not seem to impair cognitive functions or development, and usually stop spontaneously are often described as benign. Benign epilepsy syndromes include benign infantile encephalopathy and benign neonatal convulsions. Other syndromes, such as early myoclonic encephalopathy, include neurological and developmental problems. However, these problems may be caused by underlying neurodegenerative processes rather than by the seizures. Epilepsy syndromes in which the seizures and/or the person's cognitive abilities get worse over time are called progressive epilepsy.

Several types of epilepsy begin in infancy. The most common type of infantile epilepsy is infantile spasms, clusters of seizures that usually begin before the age of 6 months. During these seizures the infant may bend and cry out. Anticonvulsant drugs often do not work for infantile spasms, but the seizures can be treated with ACTH (adrenocorticotropic hormone) or prednisone.

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When Are Seizures Not Epilepsy?

While any seizure is cause for concern, having a seizure does not by itself mean a person has epilepsy. First seizures, febrile seizures, nonepileptic events, and eclampsia are examples of seizures that may not be associated with epilepsy.

First Seizures

Many people have a single seizure at some point in their lives. Often these seizures occur in reaction to anesthesia or a strong drug, but they also may be unprovoked, meaning that they occur without any obvious triggering factor. Unless the person has suffered brain damage or there is a family history of epilepsy or other neurological abnormalities, these single seizures usually are not followed by additional seizures. One recent study that followed patients for an average of 8 years found that only 33 percent of people have a second seizure within 4 years after an initial seizure. People who did not have a second seizure within that time remained seizure-free for the rest of the study. For people who did have a second seizure, the risk of a third seizure was about 73 percent on average by the end of 4 years.

When someone has experienced a first seizure, the doctor will usually order an electroencephalogram, or EEG, to determine what type of seizure the person may have had and if there are any detectable abnormalities in the person's brain waves. Thedoctor also may order brain scans to identify abnormalities that may be visible in the brain. These tests may help the doctor decide whether or not to treat the person with antiepileptic drugs. In some cases, drug treatment after the first seizure may help prevent future seizures and epilepsy. However, the drugs also can cause detrimental side effects, so doctors prescribe them only when they feel the benefits outweigh the risks. Evidence suggests that it may be beneficial to begin anticonvulsant medication once a person has had a second seizure, as the chance of future seizures increases significantly after this occurs.

Febrile Seizures

Sometimes a child will have a seizure during the course of an illness with a high fever. These seizures are called febrile seizures (febrile is derived from the Latin word for "fever") and can be very alarming to the parents and other caregivers. In the past, doctors usually prescribed a course of anticonvulsant drugs following a febrile seizure in the hope of preventing epilepsy. However, most children who have a febrile seizure do not develop epilepsy, and long-term use of anticonvulsant drugs in children may damage the developing brain or cause other detrimental side effects. Experts at a 1980 consensus conference coordinated by the National Institutes of Health concluded that preventive treatment after a febrile seizure is generally not warranted unless certain other conditions are present: a family history of epilepsy, signs of nervous system impairment prior to the seizure, or a relatively prolonged or complicated seizure. The risk of subsequent non-febrile seizures is only 2 to 3 percent unless one of these factors is present.

Researchers have now identified several different genes that influence the risk of febrile seizures in certain families. Studying these genes may lead to new understanding of how febrile seizures occur and perhaps point to ways of preventing them.

Nonepileptic Events

Sometimes people appear to have seizures, even though their brains show no seizure activity. This type of phenomenon has various names, including nonepileptic events and pseudoseizures. Both of these terms essentially mean something that looks like a seizure but isn't one. Nonepileptic events that are psychological in origin may be referred to as psychogenic seizures. Psychogenic seizures may indicate dependence, a need for attention, avoidance of stressful situations, or specific psychiatric conditions. Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. Other people who have psychogenic seizures do not have epilepsy at all. Psychogenic seizures cannot be treated in the same way as epileptic seizures. Instead, they are often treated by mental health specialists.

Other nonepileptic events may be caused by narcolepsy, Tourette syndrome, cardiac arrythmia, and other medical conditions with symptoms that resemble seizures. Because symptoms of these disorders can look very much like epileptic seizures, they are often mistaken for epilepsy. Distinguishing between true epileptic seizures and nonepileptic events can be very difficult and requires a thorough medical assessment, careful monitoring, and knowledgeable health professionals. Improvements in brain scanning and monitoring technology may improve diagnosis of nonepileptic events in the future.

Eclampsia

Eclampsia is a life-threatening condition that can develop in pregnant women. Its symptoms include sudden elevations of blood pressure and seizures. Pregnant women who develop unexpected seizures should be rushed to a hospital immediately. Eclampsia can be treated in a hospital setting and usually does not result in additional seizures or epilepsy once the pregnancy is over.

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How is Epilepsy Diagnosed?

Doctors have developed a number of different tests to determine whether a person has epilepsy and, if so, what kind of seizures the person has. In some cases, people may have symptoms that look very much like a seizure but in fact are nonepileptic events caused by other disorders. Even doctors may not be able to tell the difference between these disorders and epilepsy without close observation and intensive testing.

EEG Monitoring

An EEG records brain waves detected by electrodes placed on the scalp. This is the most common diagnostic test for epilepsy and can detect abnormalities in the brain's electrical activity. People with epilepsy frequently have changes in their normal pattern of brain waves, even when they are not experiencing a seizure. While this type of test can be very useful in diagnosing epilepsy, it is not foolproof. Some people continue to show normal brain wave patterns even after they have experienced a seizure. In other cases, the unusual brain waves are generated deep in the brain where the EEG is unable to detect them. Many people who do not have epilepsy also show some unusual brain activity on an EEG. Whenever possible, an EEG should be performed within 24 hours of a patient's first seizure. Ideally, EEGs should be performed while the patient is sleeping as well as when he or she is awake, because brain activity during sleep is often quite different than at other times.

Video monitoring is often used in conjunction with EEG to determine the nature of a person's seizures. It also can be used in some cases to rule out other disorders such as cardiac arrythmia or narcolepsy that may look like epilepsy.

Brain Scans

One of the most important ways of diagnosing epilepsy is through the use of brain scans. The most commonly used brain scans include CT (computed tomography), PET (positron emission tomography) and MRI (magnetic resonance imaging). CT and MRI scans reveal the structure of the brain, which can be useful for identifying brain tumors, cysts, and other structural abnormalities. PET and an adapted kind of MRI called functional MRI (fMRI) can be used to monitor the brain's activity and detect abnormalities in how it works. SPECT (single photon emission computed tomography) is a relatively new kind of brain scan that is sometimes used to locate seizure foci in the brain.

In some cases, doctors may use an experimental type of brain scan called a magnetoencephalogram, or MEG. MEG detects the magnetic signals generated by neurons to allow doctors to monitor brain activity at different points in the brain over time, revealing different brain functions. While MEG is similar in concept to EEG, it does not require electrodes and it can detect signals from deeper in the brain than an EEG. Doctors also are experimenting with brain scans called magnetic resonance spectroscopy (MRS) that can detect abnormalities in the brain's biochemical processes, and with near-infrared spectroscopy, a technique that can detect oxygen levels in brain tissue.

Medical History

Taking a detailed medical history, including symptoms and duration of the seizures, is still one of the best methods available to determine if a person has epilepsy and what kind of seizures he or she has. The doctor will ask questions about the seizures and any past illnesses or other symptoms a person may have had. Since people who have suffered a seizure often do not remember what happened, caregivers' accounts of the seizure are vital to this evaluation.

Blood Tests

Doctors often take blood samples for testing, particularly when they are examining a child. These blood samples are often screened for metabolic or genetic disorders that may be associated with the seizures. They also may be used to check for underlying problems such as infections, lead poisoning, anemia, and diabetes that may be causing or triggering the seizures.

Developmental, Neurological, and Behavioral Tests

Doctors often use tests devised to measure motor abilities, behavior, and intellectual capacity as a way to determine how the epilepsy is affecting that person. These tests also can provide clues about what kind of epilepsy the person has.

Can Epilepsy be Prevented?

Many cases of epilepsy can be prevented by wearing seatbelts and bicycle helmets, putting children in car seats, and other measures that prevent head injury and other trauma. Prescribing medication after first or second seizures or febrile seizures also may help prevent epilepsy in some cases. Good prenatal care, including treatment of high blood pressure and infections during pregnancy, can prevent brain damage in the developing baby that may lead to epilepsy and other neurological problems later. Treating cardiovascular disease, high blood pressure, infections, and other disorders that can affect the brain during adulthood and aging also may prevent many cases of epilepsy. Finally, identifying the genes for many neurological disorders can provide opportunities for genetic screening and prenatal diagnosis that may ultimately prevent many cases of epilepsy.

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How can Epilepsy be Treated?

Accurate diagnosis of the type of epilepsy a person has is crucial for finding an effective treatment. There are many different ways to treat epilepsy. Currently available treatments can control seizures at least some of the time in about 80 percent of people with epilepsy. However, another 20 percent -- about 600,000 people with epilepsy in the United States -- have intractable seizures, and another 400,000 feel they get inadequate relief from available treatments. These statistics make it clear that improved treatments are desperately needed.

Doctors who treat epilepsy come from many different fields of medicine. They include neurologists, pediatricians, pediatric neurologists, internists, and family physicians, as well as neurosurgeons and doctors called epileptologists who specialize in treating epilepsy. People who need specialized or intensive care for epilepsy may be treated at large medical centers and neurology clinics at hospitals or by neurologists in private practice. Many epilepsy treatment centers are associated with university hospitals that perform research in addition to providing medical care.

Once epilepsy is diagnosed, it isimportant to begin treatment as soon as possible. Research suggests thatmedication and other treatments may be less successful in treating epilepsy once seizures and their consequences become established.

Medications

Accurate diagnosis of the type of epilepsy a person has is crucial for finding an effective treatment. There are many different ways to treat epilepsy. Currently available treatments can control seizures at least some of the time in about 80 percent of people with epilepsy. However, another 20 percent -- about 600,000 people with epilepsy in the United States -- have intractable seizures, and another 400,000 feel they get inadequate relief from available treatments. These statistics make it clear that improved treatments are desperately needed.

Doctors who treat epilepsy come from many different fields of medicine. They include neurologists, pediatricians, pediatric neurologists, internists, and family physicians, as well as neurosurgeons and doctors called epileptologists who specialize in treating epilepsy. People who need specialized or intensive care for epilepsy may be treated at large medical centers and neurology clinics at hospitals or by neurologists in private practice. Many epilepsy treatment centers are associated with university hospitals that perform research in addition to providing medical care.

Once epilepsy is diagnosed, it isimportant to begin treatment as soon as possible. Research suggests thatmedication and other treatments may be less successful in treating epilepsy once seizures and their consequences become established.

Tailoring the dosage of antiepileptic drugs

When a person starts a new epilepsy drug, it is important to tailor the dosage to achieve the best results. People's bodies react to medications in very different and sometimes unpredictable ways, so it may take some time to find the right drug at the right dose to provide optimal control of seizures while minimizing side effects. A drug that has no effect or very bad side effects at one dose may work very well at another dose. Doctors will usually prescribe a low dose of the new drug initially and monitor blood levels of the drug to determine when the best possible dose has been reached.

Generic versions are available for many antiepileptic drugs. The chemicals in generic drugs are exactly the same as in the brand-name drugs, but they may be absorbed or processed differently in the body because of the way they are prepared. Therefore, patients should always check with their doctors before switching to a generic version of their medication.

Discontinuing medication

Some doctors will advise people with epilepsy to discontinue their antiepileptic drugs after 2 years have passed without a seizure. Others feel it is better to wait for 4 to 5 years. Discontinuing medication should always be done with a doctor's advice and supervision. It is very important to continue taking epilepsy medication for as long as the doctor prescribes it. People also should ask the doctor or pharmacist ahead of time what they should do if they miss a dose. Discontinuing medication without a doctor's advice is one of the major reasons people who have been seizure-free begin having new seizures. Seizures that result from suddenly stopping medication can be very serious and can lead to status epilepticus. Furthermore, there is some evidence that uncontrolled seizures trigger changes in neurons that can make it more difficult to treat the seizures in the future.

The chance that a person will eventually be able to discontinue medication varies depending on the person's age and his or her type of epilepsy. More than half of children who go into remission with medication can eventually stop their medication without having new seizures. One study showed that 68 percent of adults who had been seizure-free for 2 years before stopping medication were able to do so without having more seizures and 75 percent could successfully discontinue medication if they had been seizure-free for 3 years. However, the odds of successfully stopping medication are not as good for people with a family history of epilepsy, those who need multiple medications, those with focal seizures, and those who continue to have abnormal EEG results while on medication.

Surgery

When seizures cannot be adequately controlled by medications, doctors may recommend that the person be evaluated for surgery. Surgery for epilepsy is performed by teams of doctors at medical centers. To decide if a person may benefit from surgery, doctors consider the type or types of seizures he or she has. They also take into account the brain region involved and how important that region is for everyday behavior. Surgeons usually avoid operating in areas of the brain that are necessary for speech, language, hearing, or other important abilities. Doctors may perform tests such as a Wada test (administration of the drug amobarbitol into the carotid artery) to find areas of the brain that control speech and memory. They often monitor the patient intensively prior to surgery in order to pinpoint the exact location in the brain where seizures begin. They also may use implanted electrodes to record brain activity from the surface of the brain. This yields better information than an external EEG.

A 1990 National Institutes of Health consensus conference on surgery for epilepsy concluded that there are three broad categories of epilepsy that can be treated successfully with surgery. These include focal seizures, seizures that begin as focal seizures before spreading to the rest of the brain, and unilateral multifocal epilepsy with infantile hemiplegia (such as Rasmussen's encephalitis). Doctors generally recommend surgery only after patients have tried two or three different medications without success, or if there is an identifiable brain lesion--a damaged or dysfunctional area--believed to cause the seizures.

A study published in 2000 compared surgery to an additional year of treatment with antiepileptic drugs in people with longstanding temporal lobe epilepsy. The results showed that 64 percent of patients receiving surgery became seizure-free, compared to 8 percent of those who continued with medication only. Because of this study and other evidence, the American Academy of Neurology (AAN) now recommends surgery for TLE when antiepileptic drugs are not effective. However, the study and the AAN guidelines do not provide guidance on how long seizures should occur, how severe they should be, or how many drugs should be tried before surgery is considered. A nationwide study is now underway to determine how soon surgery for TLE should be performed.

If a person is considered a good candidate for surgery and has seizures that cannot be controlled with available medication, experts generally agree that surgery should be performed as early as possible. It can be difficult for a person who has had years of seizures to fully re-adapt to a seizure-free life if the surgery is successful. The person may never have had an opportunity to develop independence, and he or she may have had difficulties with school and work that could have been avoided with earlier treatment. Surgery should always be performed with support from rehabilitation specialists and counselors who can help the person deal with the many psychological, social, and employment issues he or she may face.

While surgery can significantly reduce or even halt seizures for some people, it is important to remember that any kind of surgery carries some amount of risk (usually small). Surgery for epilepsy does not always successfully reduce seizures and it can result in cognitive or personality changes, even in people who are excellent candidates for surgery. Patients should ask their surgeon about his or her experience, success rates, and complication rates with the procedure they are considering.

Even when surgery completely ends a person's seizures, it is important to continue taking seizure medication for some time to give the brain time to re-adapt. Doctors generally recommend medication for 2 years after a successful operation to avoid new seizures.

Surgery to treat underlying conditions

In cases where seizures are caused by a brain tumor, hydrocephalus, or other conditions that can be treated with surgery, doctors may operate to treat these underlying conditions. In many cases, once the underlying condition is successfully treated, a person's seizures will disappear as well.

Surgery to remove a seizure focus

The most common type of surgery for epilepsy is removal of a seizure focus, or small area of the brain where seizures originate. This type of surgery, which doctors may refer to as a lobectomy or lesionectomy, is appropriate only for focal seizures that originate in just one area of the brain. In general, people have a better chance of becoming seizure-free after surgery if they have a small, well-defined seizure focus. Lobectomies have a 55-70 percent success rate when the type of epilepsy and the seizure focus is well-defined. The most common type of lobectomy is a temporal lobe resection, which is performed for people with temporal lobe epilepsy. Temporal lobe resection leads to a significant reduction or complete cessation of seizures about 70 - 90 percent of the time.

Multiple subpial transection

When seizures originate in part of the brain that cannot be removed, surgeons may perform a procedure called a multiple subpial transection. In this type of operation, which has been commonly performed since 1989, surgeons make a series of cuts that are designed to prevent seizures from spreading into other parts of the brain while leaving the person's normal abilities intact. About 70 percent of patients who undergo a multiple subpial transection have satisfactory improvement in seizure control.

Corpus callosotomy

Corpus callosotomy, or severing the network of neural connections between the right and left halves, or hemispheres, of the brain, is done primarily in children with severe seizures that start in one half of the brain and spread to the other side. Corpus callosotomy can end drop attacks and other generalized seizures. However, the procedure does not stop seizures in the side of the brain where they originate, and these focal seizures may even increase after surgery.

Hemispherectomy and hemispherotomy

These procedures remove half of the brain's cortex, or outer layer. They are used predominantly in children who have seizures that do not respond to medication because of damage that involves only half the brain, as occurs with conditions such as Rasmussen's encephalitis, Sturge-Weber syndrome, and hemimegencephaly. While this type of surgery is very radical and is performed only as a last resort, children often recover very well from the procedure, and their seizures usually cease altogether. With intense rehabilitation, they often recover nearly normal abilities. Since the chance of a full recovery is best in young children, hemispherectomy should be performed as early in a child's life as possible. It is rarely performed in children older than 13.

Devices

The vagus nerve stimulator was approved by the U.S. Food and Drug Administration (FDA) in 1997 for use in people with seizures that are not well-controlled by medication. The vagus nerve stimulator is a battery-powered device that is surgically implanted under the skin of the chest, much like a pacemaker, and is attached to the vagus nerve in the lower neck. This device delivers short bursts of electrical energy to the brain via the vagus nerve. On average, this stimulation reduces seizures by about 20 - 40 percent. Patients usually cannot stop taking epilepsy medication because of the stimulator, but they often experience fewer seizures and they may be able to reduce the dose of their medication. Side effects of the vagus nerve stimulator are generally mild but may include hoarseness, ear pain, a sore throat, or nausea. Adjusting the amount of stimulation can usually eliminate most side effects, although the hoarseness typically persists. The batteries in the vagus nerve stimulator need to be replaced about once every 5 years; this requires a minor operation that can usually be performed as an outpatient procedure.

Several new devices may become available for epilepsy in the future. Researchers are studying whether transcranial magnetic stimulation (TMS), a procedure which uses a strong magnet held outside the head to influence brain activity, may reduce seizures. They also hope to develop implantable devices that can deliver drugs to specific parts of the brain.

Diet

Studies have shown that, in some cases, children may experience fewer seizures if they maintain a strict diet rich in fats and low in carbohydrates. This unusual diet, called the ketogenic diet, causes the body to break down fats instead of carbohydrates to survive. This condition is called ketosis. One study of 150 children whose seizures were poorly controlled by medication found that about one-fourth of the children had a 90 percent or better decrease in seizures with the ketogenic diet, and another half of the group had a 50 percent or better decrease in their seizures. Moreover, some children can discontinue the ketogenic diet after several years and remain seizure-free. The ketogenic diet is not easy to maintain, as it requires strict adherence to an unusual and limited range of foods. Possible side effects include retarded growth due to nutritional deficiency and a buildup of uric acid in the blood, which can lead to kidney stones. People who try the ketogenic diet should seek the guidance of a dietician to ensure that it does not lead to serious nutritional deficiency.

Researchers are not sure how ketosis inhibits seizures. One study showed that a byproduct of ketosis called beta-hydroxybutyrate (BHB) inhibits seizures in animals. If BHB also works in humans, researchers may eventually be able to develop drugs that mimic the seizure-inhibiting effects of the ketogenic diet.

Other Treatment Strategies

Researchers are studying whether biofeedback -- a strategy in which individuals learn to control their own brain waves -- may be useful in controlling seizures. However, this type of therapy is controversial and most studies have shown discouraging results. Taking large doses of vitamins generally does not help a person's seizures and may even be harmful in some cases. But a good diet and some vitamin supplements, particularly folic acid, may help reduce some birth defects and medication-related nutritional deficiencies. Use of non-vitamin supplements such as melatonin is controversial and can be risky. One study showed that melatonin may reduce seizures in some children, while another found that the risk of seizures increased measurably with melatonin. Most non-vitamin supplements such as those found in health food stores are not regulated by the FDA, so their true effects and their interactions with other drugs are largely unknown.

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What To Do If You See Someone Having a Seizure

If you see someone having a seizure with convulsions and/or loss of consciousness, here's how you can help:

  1. Roll the person on his or her side to prevent choking on any fluids or vomit.
  2. Cushion the person's head.
  3. Loosen any tight clothing around the neck.
  4. Keep the person's airway open. If necessary, grip the person's jaw gently and tilt his or her head back.
  5. Do NOT restrict the person from moving unless he or she is in danger.
  6. Do NOT put anything into the person's mouth, not even medicine or liquid. These can cause choking or damage to the person's jaw, tongue, or teeth. Contrary to widespread belief, people cannot swallow their tongues during a seizure or any other time.
  7. Remove any sharp or solid objects that the person might hit during the seizure.
  8. Note how long the seizure lasts and what symptoms occurred so you can tell a doctor or emergency personnel if necessary.
  9. Stay with the person until the seizure ends.
  10. This is a first seizure or you think it might be. If in doubt, check to see if the person has a medical identification card or jewelry stating that they have epilepsy or a seizure disorder.
  11. After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Be patient with the person and try to help him or her find a place to rest if he or she is tired or doesn't feel well. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely.
  12. If you see someone having a non-convulsive seizure, remember that the person's behavior is not intentional. The person may wander aimlessly or make alarming or unusual gestures. You can help by following these guidelines:
  • Remove any dangerous objects from the area around the person or in his or her path.
  • Don't try to stop the person from wandering unless he or she is in danger.
  • Don't shake the person or shout.
  • Stay with the person until he or she is completely alert.

Call 911 if:

  • The person is pregnant or has diabetes.
  • The seizure happened in water.
  • The seizure lasts longer than 5 minutes.
  • The person does not begin breathing again or does not return to consciousness after the seizure stops.
  • Another seizure starts before the person regains consciousness.
  • The person injures himself or herself during the seizure.

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Where can I get more information?

For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:

BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov

Information also is available from the following organizations:

Citizens United for Research in Epilepsy (CURE)
730 N. Franklin
Suite 404
Chicago, IL   60610
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.CUREepilepsy.org
Tel: 312-255-1801
Fax: 312-255-1809
Non-profit grassroots organization formed by parents and families to raise funds for epilepsy research.
Epilepsy Foundation
4351 Garden City Drive
Suite 500
Landover, MD   20785-7223
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.epilepsyfoundation.org
Tel: 301-459-3700 800-EFA-1000 (332-1000)
Fax: 301-577-2684
National charitable organization dedicated to the welfare of people with epilepsy. Works for children and adults affected by seizures through education, advocacy, services, and research towards a cure. Offers a Legal Defense Program through a fund.
Epilepsy Institute
257 Park Avenue South
New York, NY   10010
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.epilepsyinstitute.org
Tel: 212-677-8550
Fax: 212-677-5825
Non-profit organization that provides comprehensive social services and resources for people with epilepsy and their families.
Parents Against Childhood Epilepsy (PACE)
7 East 85th Street
Suite A3
New York, NY   10028
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.paceusa.org
Tel: 212-665-PACE (7223)
Fax: 212-327-3075
Non-profit research resource that provides information and support to families of children with epilepsy.
Family Caregiver Alliance/ National Center on Caregiving
180 Montgomery Street
Suite 1100
San Francisco, CA   94104
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.caregiver.org
Tel: 415-434-3388 800-445-8106
Fax: 415-434-3508
Supports and assists families and caregivers of adults with debilitating health conditions. Offers programs and consultation on caregiving issues at local, state, and national levels. Offers free publications and support online, including a national directory of publicly funded caregiver support programs.
National Council on Patient Information and Education
4915 St. Elmo Avenue
Suite 505
Bethesda, MD   20814-6082
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.talkaboutrx.org
Tel: 301-656-8565
Fax: 301-656-4464
Coalition of nearly 150 organizations committed to safer, more effective medicine use through better communication. Additional website is www.bemedwise.org.
National Family Caregivers Association
10400 Connecticut Avenue
Suite 500
Kensington, MD   20895-3944
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.thefamilycaregiver.org
Tel: 301-942-6430 800-896-3650
Fax: 301-942-2302
Grassroots organization dedicated to supporting and improving the lives of America's family caregivers. Created to educate, support, empower, and advocate for the millions of Americans who care for their ill, aged, or disabled loved ones.
National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT   06813-1968
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
International RadioSurgery Association (IRSA)
P.O. Box 5186
Harrisburg, PA   17110
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.irsa.org
Tel: 717-260-9808
Fax: 717-260-9809
Proactive patient organization providing information and referrals on Gamma Knife, Linac, and particle beam radiosurgery for brain tumors, arteriovenous malformations (AVMs), and neurological pain and movement disorders.
Charlie Foundation to Help Cure Pediatric Epilepsy
1223 Wilshire Blvd.
Suite #815
Santa Monica, CA   90403
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.charliefoundation.org
Tel: 800-FOR-KETO (367-5386) 310-395-6751
Fax: 310-393-1978
Non-profit organization that raises money for scientific research focusing on the ketogenic diet. Offers education programs and materials for families and dieticians.
Epilepsy Therapy Development Project
11921 Freedom Drive
Suite 730
Reston, VA   20190
http://www.epilepsytdp.org
Tel: 703-437-4250
Fax: 703-437-4288
Nonprofit corporation that works to advance new treatments for people living with epilepsy. Supports innovative research in academia and industry. Provides information through the www.epilepsy.com website.
Antiepileptic Drug Pregnancy Registry
MGH East, CNY-149, 10th Floor
149 13th Street
Charlestown, MA   02129-2000
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.aedpregnancyregistry.org
Tel: 888-AED-AED4 (233-2334)
Fax: 617-724-8307
Registry designed to determine what therapies are associated with increased risk of harmful fetal effects. Participation is confidential.
National Council on Patient Information and Education
4915 St. Elmo Avenue
Suite 505
Bethesda, MD   20814-6082
This email address is being protected from spambots. You need JavaScript enabled to view it.
http://www.talkaboutrx.org
Tel: 301-656-8565
Fax: 301-656-4464
Coalition of nearly 150 organizations committed to safer, more effective medicine use through better communication. Additional website is www.bemedwise.org.
 

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CAREGIVER TIPS & INFORMATION:
10 Tips for Family Caregivers
Questions to Ask Your Healthcare Provider
How to Communicate with an Insurance Provider
Find a Doctor
Information on Seating & Mobility
Tips for Family Caregivers from Doctors
Care Management Techniques You Can Use
Compare Home Health Agencies in Your Area
Additional Resources

 


10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
5. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
6.Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
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Tips for Family Caregivers from Doctors

  • Write questions down so you won’t forget them
  • Be clear about what you want to say to the doctor. Try not to ramble.
  • If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
  • Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
  • Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
  • Recognize that not all questions have answers—especially those beginning with “why.”
  • Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
  • Appreciate what the doctor is doing to help and say thank you from time to time.
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Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is “yes,” you’re not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

  • Gathering information from healthcare providers;
  • An assessment of your care recipient and the home environment;
  • Research into available public and/or private services and resources to meet your loved one’s needs; and
  • Ongoing communication between all parties to keep information up to date and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one’s health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you’ll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control — a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you’re dealing. Reliable information is available from the health agency that deals with your loved one’s condition and the National Institutes of Health. When using the Internet, stick with wellknown medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:
  • Your loved one’s ability to function independently, both physically and mentally.
  • The availability of family and/or friends to form a support network to share the care.
  • The physical environment: Is it accessible or can it be adapted at reasonable cost?
  • Your other responsibilities — at work, at home, and in the community.
  • Your own health and physical abilities.
  • Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you’ve learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what’s going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one’s care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you’ll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn’t family caregivers?

Start advance planning for difficult decisions that may lie ahead. It’s never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you’ll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It’s extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

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Seating & Mobility - As a caregiver, you need to be very understanding to the individuals needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. Getting them involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manor. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
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Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs such office on disabilities, elder affairs, or material and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

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Respiratory Equipment & Products:

Wheelchairs and Components:

 

Health Issues:

Mobility Products:

Other Home Medical Equipment:


Respiratory Equipment & Products

Bi-Level - Bi-Level system makes breathing easier and more natural for adult patients with Obstructive Sleep Apnea (OSA) who are having difficulty complying with continuous positive airway pressure therapy.

Continuous Positive Airway Pressure (CPAP) - One of the most common sleep disorders is sleep apnea - a disorder that causes a person's airway to close several times during one night's sleep. For those with sleep apnea, relief usually comes with continuous positive airway pressure (CPAP). Continuous Positive Airway Pressure (CPAP) devices deliver a prescribed level of positive pressure non-invasively to the upper airway for the treatment of sleep apnea. Extremely easy to use, CPAPs come with different features such as ramping to allow comfortable adjustment to the pressure; software to capture specific usage and breathing events; and automated altitude adjustment. Accessories, such as nasal interface applications and humidification devices are provided to afford maximum comfort to ensure patient compliance.

Liquid oxygen systems - consist of a large main tank and one or two portable units. The portable units are used as needed for travel outside of the home. When they are empty, they can be refilled from the large tank. Portable units can be carried with a shoulder strap or cart. Liquid oxygen will evaporate if not used frequently. Therefore the portable units should be filled just prior to use.

Cylinders - are available in various sizes. Carrying cases or carts are used for the different size tanks.

M2 - Weighs less than 2 pounds and only 7.9 inches in length, this extremely lightweight, compact medical oxygen cylinder is the perfect solution for anyone who needs a convenient, easily transportable medical oxygen supply for a short amount of time. This cylinder is the smallest aluminum oxygen cylinder in the world yet can supply up to 2 hours of oxygen.
M4 - medical oxygen cylinder is a great solution for anyone who needs a convenient, easily transportable medical oxygen supply for a short amount of time. This cylinder weighs under 3 pounds and is only 12 inches in length. This cylinder can supply up to 7 hours of oxygen.
M6 - extremely popular medical oxygen cylinder is the perfect balance between portability and oxygen supply duration. The M6 cylinder is less than 15 inches in length and weighs only 3 pounds and can supply up to 10 hours of oxygen.
ML6 - Similar to the M6 cylinder, the ML6 is a great balance between portability and oxygen supply duration. This cylinder weighs under 4 pounds and is shorter and wider than the M6 cylinder. This cylinder can provide up to 10 hours of oxygen.
M9 - a popular cylinder is a great balance between portability and oxygen supply duration. The M9 is less than 16 inches in length and weighs only 4.5 pounds yet can supply up to 14 hours of oxygen.

Portable E Tanks - Portable smaller units called E tanks are used for transport. A key is required to turn the tank on and off. The portable tanks must be replaced when empty. Therefore, the family must plan ahead for trips outside of the home. Portable E tanks may be used for backup in case of power failure.

Helios Portable Oxygen Systems and Reservoirs - small, lightweight, and long-lasting, encourages an active lifestyle for long-term oxygen therapy patients. No tubes, heavy canisters or batteries are required. The system is also extremely economical. Its pneumatic oxygen conserving device gives it a conservation ratio over continuous flow oxygen of approximately 4:1. This provides up to 10 hours of use at a setting of 2. The portable unit can be refilled in about 40 seconds from the home reservoir, which typically lasts four to six weeks between refills.

Nebulizer - is a type of inhaler that provides a fine mist of medication to the lungs. This is performed by breathing the medicated mist through a mouthpiece or mask attached to the nebulizer device, which is driven via a plastic tubing, attached to the compressor unit. The medications used in nebulizers help you by loosening the mucus in the lungs so it can be coughed out more easily, and by relaxing the airways so that more air can move in and out of the lungs. Nebulizer treatments take approximately 15 minutes to deliver the medication and are prescribed by your physician.

Pediatric Nebulizer - A special breathing device usually used 3 or 4 times daily as needed; or as directed by your doctor. It works in the lungs by opening breathing passages to make breathing easier. This device is intended for use in children but may also be used for adults requiring smaller doses.

Oxygen Concentrators - electronically powered device with a series of filters that extract oxygen from room air. Also, a backup system, usually a stationary compressed gas system must always accompany a concentrator in case of power failure or other emergency. Regular household current is sufficient for its use. In limited cases, a humidifier bottle may be necessary to increase moisture to the oxygen as it passes through the tubing to the mask or cannula.
Common Diagnoses:
        - Chronic Obstructive pulmonary diseases (COPD)
        - Emphysema
        - Asthma
        - Chronic Bronchitis
        - Lung Cancer
        - Acute Myocardial Infarction
        - Acute Pulmonary Heart Disease
        - Congestive Heart Failure
        - Viral Pneumonia
        - Bacterial Pneumonia
        - Bronchlectasis

Oxygen Conservers - are types of regulators, which conserve the amount of gaseous oxygen in portable cylinders. Oximetry testing is required to ensure proper oxygen saturation during use of a conserver.

Portable Oxygen Systems - incorporate either the electronic conserving device, the pneumatic conserving device, or standard flow regulators. These systems provide individuals with a convenient, lightweight supply of oxygen. Systems are available with one or multiple M4, M6, M9, MD, or ME cylinders, fiber-wrapped cylinders, shoulder, horizontal, backpack, or fanny pack style carrying bags, cart, regulator, cannula, and supply tubing. All systems are also available with a straight post valve, handtight or a toggle CGA870 valve.

Ventilators - An automatic mechanical/pneumatic device designed to reduce or provide the work required to move gas into and out of the lungs.

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Mobility Products

Canes - adjustable height canes can improve balance and reduce fatigue. Travel canes can fold up and be carried in a travel case. Standard crook canes are lightweight and durable to help improve balance and reduce fatigue . Quad canes are used when there is a need for additional stability. Quad canes have a base with four legs, affording greater stability than straight canes. Quad canes can be ordered with narrow or wide bases.

Crutches - Standard adjustable crutches are lightweight and easily adjust to size. Forearm crutches have contoured arm cuffs for extra comfort and stability.

Lifts/Seating Systems - Power lift chairs gently move the person to a standing, seated, or reclined position.

Patient Lifts - (power or hydraulic) for assistance with patient transferring. Lift/commode is an FDA registered medical device, ideal for people with musculoskeletal or neuromuscular limitations. It is motorized and designed to operate as a lift system and as an adjustable-height commode. It can be used as a bedside commode (helps reduce bedpan use) or as a transfer system to move a person from a bed to a seated or standing position.

Ramps - portable ramps for wheelchairs and scooters roll up for easy carrying with storage bag. Scooter ramps have side rails and center panels that slide easily into place, locking securely to provide a solid drive surface. Suitcase ramps are convenient and compact, fold up easily and have a built-in carrying handle. Telescopic channel ramps each extend to be used on steps, vans, or curbs. For storage, simply pick up each rail and depress the guide buttons to collapse. Chair lifts allow you to lift and carry your power chair fully assembled.

Walkers - are available in a variety of styles to meet individual needs. Folding, adjustable walkers can be easily transported in vehicles. Hemi-walkers allow for one-hand utilization. Wheeled walkers minimize lifting. Many accessories, such as walker trays, baskets or pouches are available.

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Disease States:

Hypertension: Blood pressure greater than or equal to 140/90 mmHg.

COPD: Chronic obstructive pulmonary disease (COPD) is a catch-all term for a number of respiratory diseases. The diseases of COPD include chronic bronchitis, pulmonary emphysema, asthma, and bronchiectasis (a chronic inflammatory or degenerative condition of one or more bronchi or bronchioles marked by dilatation and loss of elasticity of the walls).

Asthma: Hyper-responsive airways manifested by a narrowing of the airway.

Sleep Apnea: a breathing disorder characterized by brief interruptions of breathing during sleep.

    1. Central Sleep Apnea: Occurs when the brain fails to send the appropriate signals to the breathing muscles to initiate respirations.
    2. Obstructive Sleep Apnea: Occurs when air cannot flow into or out of the person’s nose or mouth, although efforts to breathe continue.

Diabetes: Disease in which blood glucose levels are above normal

    1. Type 1 diabetes: diabetes of a form that usually develops during childhood or adolescence and is characterized by a severe deficiency of insulin secretion resulting from atrophy of the islets of Langerhans and causing hyperglycemia and a marked tendency toward ketoacidosis -- called also insulin-dependent diabetes, insulin-dependent diabetes mellitus, juvenile diabetes, juvenile-onset diabetes, type 1 diabetes mellitus
    2. Type 2 diabetes: a common form that develops especially in adults and most often in obese individuals and that is characterized by hyperglycemia resulting from impaired insulin utilization coupled with the body's inability to compensate with increased insulin production -- called also adult-onset diabetes, late-onset diabetes, maturity-onset diabetes, non-insulin-dependent diabetes, non-insulin-dependent diabetes mellitus, type 2 diabetes mellitus

CHF: Heart failure in which the heart is unable to maintain adequate circulation of blood in the tissues of the body or to pump out the venous blood returned to it by the venous circulation

Urinary Incontinence: Incontinence is the inability to control the passage of urine. This can range from an occasional leakage of urine to a complete inability to hold any urine. Urinary incontinence affects approximately 13 million people in the United States and is more common in women than in men. It occurs in 10 percent to 25 percent of women younger than age 65 and in 15 percent to 30 percent of women older than age 60 who do not live in nursing homes. Among nursing home residents, incontinence is even more common, affecting more than 50 percent of female patients.

Cystic Fibrosis (CF): A life-threatening disorder that causes severe lung damage and nutritional deficiencies. CF is an inherited (genetic) condition affecting the cells that produce mucus, sweat, saliva and digestive juices. Normally, these secretions are thin and slippery, but in CF, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts, and passageways, especially in the pancreas and lungs. Respiratory failure is the most dangerous consequence of CF. Each year approximately 3,200 white babies are born in the United States with CF. The disease is much less common among black and Asian-American children. Most babies born with CF are diagnosed by age 3, although mild forms of the disease may not be detected until the third, fourth, or fifth decade of life. In all, about 30,000 American adults and children are living with the disorder. Although there's still no cure, the emerging field of gene therapy may someday help correct lung problems in people with CF.

Hepatitis C HCV (Hepatitis C Virus): An inflammation of the liver causing soreness and swelling. It is the most common chronic blood-borne infection in the United States. The hepatitis C virus usually is transmitted through contact with infected blood, most commonly by sharing needles during intravenous drug use, or getting a blood transfusion before 1992. Hepatitis C also may be spread through unprotected sexual intercourse, but this is uncommon. Most people don't feel sick when they are first infected with hepatitis C. Instead, the virus stays in their liver and causes chronic liver inflammation.

Multiple Sclerosis: A chronic, potentially debilitating disease that affects your brain and spinal cord (central nervous system). The illness is probably an autoimmune disease, which means your immune system responds as if part of your body is a foreign substance.In MS, your body directs antibodies and white blood cells against proteins in the myelin sheath surrounding nerves in your brain and spinal cord. This causes inflammation and injury to the sheath and ultimately to your nerves. The result may be multiple areas of scarring (sclerosis). The damage slows or blocks muscle coordination, visual sensation, and other nerve signals.The disease varies in severity, ranging from a mild illness to one that results in permanent disability. Treatments can modify the course of the disease and relieve symptoms.An estimated 400,000 Americans have MS. It generally first occurs in people between the ages of 20 and 50. The disease is twice as common in women as in men.

Muscular Dystrophy: A group of rare inherited muscle diseases in which muscle fibers are unusually susceptible to damage. Muscles, primarily your voluntary muscles, become progressively weaker. In the late stages of muscular dystrophy, fat and connective tissue often replace muscle fibers. In some types of muscular dystrophy, heart muscles, other involuntary muscles and other organs are affected. There are many forms of muscular dystrophy, some noticeable at birth (congenital muscular dystrophy), others in adolescence (Becker MD), but the 3 most common types are Duchenne, facioscapulohumeral, and myotonic. The various types of the disease affect more than 50,000 Americans. There's no cure, but medications and therapy can slow the course of the disease.

Osteoporosis: A disease in which the density and quality of bone are reduced, leading to weakness of the skeleton and increased risk of fracture, particularly of the spine, wrist, hip, pelvis, and upper arm. Osteoporosis and associated fractures are an important cause of mortality and morbidity.

In many affected people, bone loss is gradual and without warning signs until the disease is advanced. Osteoporosis is also known as "the silent crippler" because a person usually doesn't know they have it until it's too late. Unfortunately, in many cases, the first real "symptom" is a broken bone. Loss of height - with gradual curvature of the back (caused by vertebral compression fractures) may be the only physical sign of osteoporosis.

In the United States, osteoporosis causes more than 1.5 million fractures every year — most of them in the spine, hip, or wrist. And although it's often thought of as a women's disease, osteoporosis affects many men as well. About 8 million American women and 2 million American men have osteoporosis, and nearly 18 million more Americans may have low bone density. Even children aren't immune.

Parkinson's Disease: Parkinson's disease belongs to a group of conditions called movement disorders. It is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time.

Parkinson's disease occurs when a group of cells, in an area of the brain called the substantia nigra, that produce a chemical called dopamine begin to malfunction and eventually die. Dopamine is a neurotransmitter, or chemical messenger, that transports signals to the parts of the brain that control movement initiation and coordination. When Parkinson's disease occurs, for unexplained reasons, these cells begin to die at a faster rate and the amount of dopamine produced in the brain decreases. The four primary symptoms are:

  • tremor of the hands, arms, legs, jaw, and face;
  • rigidity or stiffness of the limbs and trunk;
  • bradykinesia or slowness of movement, and
  • postural instability or impaired balance and coordination.

 

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Wheelchairs and Components:

Manual Wheelchairs

Lightweight/Sports Chairs - The most popular type of wheelchair for everyday use for a person with good upper body mobility is the lightweight manual wheelchair. Lightweight chairs provide maximum independence of movement with a minimum of effort. Many active wheelchair users also prefer the sportier look of the lightweights compared with the more standard-looking everyday chair. It should be noted, however, that heavy or obese persons may be unable to use these types of chairs because the lighter weight of the frame results in a reduced user capacity as compared to standard everyday chairs. Once used primarily by wheelchair athletes, the lightweight chair today is used by people in virtually all walks of life as a preferred mode of assisted mobility. Three-wheeled chairs, also developed for such sports as tennis and basketball, are also an everyday chair alternative.

Standard/Everyday Chairs - Some wheelchair users still prefer or require a standard wheelchair, which is characterized by a cross-brace frame, built-in or removable arm rests, swing-away footrests, a mid- to high-level back, and push handles to allow non-occupants to propel the chair.

Child/Junior Chairs - Children and young adults need chairs that can accommodate their changing needs as they grow. In addition, it is important that wheelchairs for children or teens be adaptable to classroom environments and be "friendly looking" to help the user fit more readily into social situations. Manufacturers today are becoming increasingly sensitive to these market demands and are attempting to address them with innovative chair designs and a variety of "kid-oriented" colors and styles.

Specialty Chairs - Because of the diverse needs of wheelchair users, wheelchairs have been designed to accommodate many lifestyles and user needs. Hemi chairs, which are lower to the floor than standard chairs, allow the user to propel the chair using leg strength. Chairs that can be propelled by one hand are available for people who have paralysis on one side. Oversized chairs and chairs designed to accommodate the weight of obese people are also offered. Rugged, specially equipped chairs are available for outdoor activities.  Aerodynamic three-wheeled racing chairs are used in marathons and other racing events. Manual chairs that raise the user to a standing position are available for people who need to be able to stand at their jobs, or who want to stand as part of their physical conditioning routine. These and other specialized chair designs generally are manufactured by independent wheelchair manufacturers who are trying to meet the needs of specific target markets.

Institutional/Nursing Home/Depot Chair - The least expensive type of chair available, an institutional chair, is designed for institutional usage only, such as transporting patients in hospitals or nursing homes. It is not an appropriate alternative for anyone who requires independent movement, as the institutional chair is not fitted for a specific individual. These types of chairs are now also used as rental chairs and by commercial enterprises (such as grocery stores and airports) for temporary use.

Manual Wheelchair Components

Frame - The two most common types of frames currently available are rigid frame chairs (where the frame remains in one piece and the wheels are released for storage or travel), and the standard cross-brace frame (which enables the frame to fold for transport or storage).

Upholstery - must withstand daily use in all kinds of weather.   Consequently, manufacturers provide a variety of options to users, ranging from cloth to new synthetic fabrics to leather. Many manufacturers also offer a selection of upholstery colors, ranging from black to neon, to allow for individual selection and differing tastes among consumers.

Seating System - are sold separately from the wheelchairs themselves, as seating must be chosen on an individual basis. It is important when selecting a wheelchair or a seating system to ensure that the two components are compatible.

Brakes - or wheel locks are available in several different designs, and can be mounted at various heights to maximize convenience to the user.

Wheels/Tire - Most wheelchairs use four wheels, with two large wheels at the back and two smaller ones (casters) at the front. The standard tire used for the rear wheels on most wheelchairs is a pneumatic tire, for which the standard size is 24 inches. Smaller and larger sizes, however, also are available. Many manufacturers now also offer other types of tires--such as solid tires, semi-pneumatic, or radial tires--at extra cost. Mag wheels and off-road wheels also are options on some chairs. Casters, too, vary in size (ranging from six to eight inches in diameter) and composition (pneumatic, solid rubber, plastic, or a combination of these).

Footrests - usually are incorporated into the frame of the chair as part of the design. Cross-brace folding chairs often have footrests which swivel, flip up, and/or can be removed.

Armrests - Many lightweight manual chairs are designed to be used without armrests.   The absence of armrests makes it easier for the user to roll up to a desk or table, and many active wheelchair users prefer the streamlined look of a chair with no armrests. However, armrests are helpful if the user has difficulty with upper body balance while seated. Armrests come in a variety of styles including desk length (to allow the user closer access to desks and tables) or full length and both types may be flip-up, fixed, or detachable.

Powered Wheelchairs

A powered wheelchair must be selected carefully in order to ensure it not only meets the needs of the individual who will use it but also represents good value for the money being invested in it. Physical considerations include posture, strength, sensation, visual acuity and perception, and the ability to learn how to use the wheelchair safely. A functional evaluation should include actual use of the wheelchair in everyday settings; an evaluation of the individual's ability to get in and out of the wheelchair; and the ability to perform needed activities from the wheelchair. Transportation to and from various settings also is an important consideration: Is a van available to transport the individual in the chair, or is it necessary for the chair to fold or disassemble in order to be carried in an automobile trunk?

Powered Wheelchair Components

Frames - Many traditional-style models utilize the traditional cross-brace frame which allows the chair to be folded or collapsed for storage and transport once the batteries have been removed. Other traditional models and some power base chairs disassemble for transport. A number of chairs, however, are designed to be transported while carrying the user; consequently, they do not fold or disassemble.

Upholstery - for wheelchairs must withstand daily use in all kinds of weather.  Consequently, manufacturers provide a variety of options to users, ranging from cloth to new synthetic fabrics to leather.  Many manufacturers also offer a selection of upholstery colors, ranging from black to neon, to allow for individual selection and differing tastes among consumers.

Seating System - Sold separately from the wheelchairs themselves, as seating must be chosen on an individual basis. It is important when selecting a wheelchair or a seating system to ensure that the two components are compatible. Power base chairs, because of their more modular construction, frequently feature customized chair-style seating systems.

Brakes - Most powered chairs utilize a dynamic braking system in which the motor and brakes work together to slow and stop the chair when the joystick or other controller is released, and which automatically engages the brakes when the power is off or when the chair is not being powered in a forward or reverse motion with the controller.

Wheels/Tires - Power base chairs typically use four wheels of the same size, usually 8 to 10 inches in diameter. These chairs may have pneumatic, semi-pneumatic, or solid tires.

Footrests - A variety of footrest assemblies are available on both types of wheelchairs.  They may be a rigid single unit, 90 degree-90 degree platforms, folding, flip-up, detachable, adjustable length, hemi- height, or have a combination of features.

Armrests - Armrests also come in several styles or with a combination of features. They may be full- or desk-length, or wraparound, and they may be fixed, removable, pivoting, and/or adjustable height.

Controls - Powered chairs generally include as a standard feature a manually controlled joystick to regulate the chair's speed and direction. However, most manufacturers offer customized control options to accommodate the varied abilities of the user, including sip-n-puff systems, head and chin switches, push-button controls, trackballs, and tillers. Many chairs also have programmable control features which allow the user or a dealer to adjust or set the chair's speed and control limits as the user's abilities change.

Drive System - the means by which power is delivered to the chair's wheels. Standard drive systems include gear drive, direct drive, and belt drive. The type of drive system affects the power available to propel the chair and the amount and type of maintenance the chair requires.

Batteries - A determining factor in the range and power of a powered chair. Generally, the larger the chair's batteries, the greater the power and the longer the chair's range between charges. Many chairs require two rechargeable 12-volt batteries. Most wheelchairs utilize U1, group 22 or 24 batteries, although other batteries are also used. More manufacturers are designing chairs around the group 24 battery because it affords a longer range. The type of battery required is also an important consideration in terms of safety, maintenance, and transport. Powered chairs may utilize lead acid, gel cell, or sealed wet batteries. Gel cell batteries require the least maintenance and have less danger of leaking than do the other battery types. Gel cell batteries are also required by a number of airlines when transporting powered
chairs.

Special Powered Features - Powered chairs may offer specialized powered features to meet the user's needs, either as customization or options on a standard chair or as a chair designed specifically for a particular purpose. Among the available features are elevating and lowering seats, and reclining and/or tilt-in-space seats.  Specialized chairs have the capacity to raise the user to a standing position, to negotiate stairs, or to be used as a lift or in transferring.

Scooters

Typically, scooter users have some ability to walk, but are limited in distance or stamina--stroke survivors or people with milder forms of cerebral palsy, multiple sclerosis, post-polio syndrome, arthritis, and cardiac conditions, among others. Scooters are used to increase and extend the range of personal mobility and help conserve energy. Scooter users often have difficulty propelling manual wheelchairs, but do not require the sophisticated electronic controls and seating systems common in powered wheelchairs.

A number of other physical factors must also be evaluated when determining whether a scooter is an appropriate mobility aid. A scooter user generally must be able to sit upright for extended periods and have sufficient seated balance to maintain an erect posture. Further, sufficient upper body and arm strength to master the controls and steer and maneuver the unit are required.  In addition, uncorrected vision disabilities, or conditions which may cause confusion or memory loss or which inhibit proper safety awareness may render a scooter an unsatisfactory mobility aid.

Scooter Configurations and Components

Base Unit - is basically the body of the scooter. Generally it consists of a steel, aluminum, or composite frame with a fiberglass or composite floor to support the feet and batteries. Some scooter bases also include a shroud over the front wheel and drive head, creating a dashboard for the unit. The base also includes the wheels and the drive train. In some scooters, the seat post is also part of the base. The base unit is the primary determinant of whether the scooter is designed for indoor or outdoor use, the vehicle's maneuverability, the size of its wheelbase, its ground clearance, its turning radius, and its overall dimensions.

A scooter should not tip easily during sharp turns or on inclines such as curb cuts (if the scooter is designed for outdoor use).  Anti-tip wheels should be included as part of the frame to help support and stabilize the scooter. On front-wheel drive units, anti-tips are often located laterally just behind the front wheels because they generally lack the power for steep inclines. Because most rear-wheel drive scooters are intended to negotiate more rugged terrain, they are usually equipped with rear anti-tips to support the scooter on hills. Side anti-tip wheels are sometimes offered as options. It should be noted that lateral anti-tippers may cause difficulties on curb cuts and ramps.

On some scooters, the base unit may be comprised of modular units or may otherwise be disassembled for transport and storage. These same features may also allow the scooter to be converted from three- to four-wheeled models and/or from indoor to outdoor use.

Drive Train, Brakes, and Power System - The drive train is an integral part of the base unit and provides either front- or rear- wheel drive for the scooter. Front-wheel drive is usually found on smaller scooters designed primarily to be used indoors or outdoors on flat, paved surfaces. The motor of the front-wheel drive scooter is located over the front wheel and drives only that wheel. Because of the motor and wheel configuration, front-wheel drive scooters are usually direct-drive units, eliminating chains and belts. However, this also means that the front wheel pulls the weight of the unit and the rider. Consequently, these types of scooters have a lesser capacity to move their load than do rear-wheel drive models, and are therefore less capable of handling hills, curb cuts, and other outdoor terrain. This is compounded by the fact that front-wheel drive models generally have smaller motors, causing them to have a shorter range, less speed and power, and a smaller rider weight capacity.

Rear-wheel drive scooters are powered by motors connected to the rear axle, either via a chain, a belt, a transaxle unit, or some combination.  Because the scooter is driven by the rear wheels, they push the combined weight of the unit and the rider, rather than pull it. The combined weight of the rider, the motor, and the batteries over the rear wheels, generally create better traction than that usually provided by front-wheel drive models.  The increased traction combined with the more powerful motors used on rear-wheel drive scooters results in better climbing ability. The units also have a greater maximum speed, a longer travelling range between battery charges, and a larger rider weight capacity. These scooters have a wider wheel base and a greater overall length, making them less maneuverable and rendering some models unsuitable for indoor use. They may also be too large for van or bus lifts.

Brakes - most rear-wheel drive scooters utilize an electronic or electro-mechanical dynamic, regenerative braking system. This type of braking system works in tandem with the motor, first to slow and then stop the vehicle when the pressure is released on the thumb levers or the controls are otherwise disengaged.  When the scooter is not being powered forward or in reverse, the brakes are engaged, thus preventing the scooter from moving. During the application of the brakes, excess power from the motor is channeled to the batteries, providing recharging. Because the brakes are engaged when the scooter is being actively powered, most scooters with this braking system are equipped with a clutch on the motor or another release lever to manually disengage the brakes to allow the scooter to be pushed in case of emergency.

Some scooters also use disc brakes or disc brakes in combination with the braking system discussed above. Some scooters--usually front-wheel drive models--are not equipped with electronic or electro-mechanical brakes. In the absence of a brake system, a manual parking brake applied by lever to a rear wheel is provided. Manual parking brakes may also be offered either as optional or standard features on other scooters to provide extra braking on hills and inclines.

Batteries - most scooters utilize 12- or 24-volt motors and electrical systems generally with one or two 12-volt batteries to power the drive train and controls.  Twelve-volt systems are most frequently found on front-wheel drive scooters, and usually require one 12-volt battery, although two six-volt batteries are sometime used. Some manufacturers offer add-on units for 12-volt systems which allow them to utilize two batteries to extend the scooter's range between charges, although speed and power are not affected. Rear-wheel drive systems generally require two twelve-volt batteries to power 24-volt systems.

These batteries are "deep cycle" batteries intended for wheelchairs and scooters and generally last between 12 and 18 months, although with conservation and regular charging, longer life may be achieved. Deep cycle batteries are designed to provide a steady supply of power and be discharged and recharged on a regular basis. Automotive and marine batteries, on the other hand, are designed to be starter batteries, providing short bursts of power only. Consequently, marine and automotive batteries should never be substituted for deep cycle batteries.

There are three basic types available for use with scooters: Lead acid (or wet cell) batteries, sealed lead-acid batteries, and gel cell batteries.  Lead acid batteries are the least expensive of the three types, but they also require the most maintenance.  In addition to regular charging, electrolyte and water levels must be checked regularly, with water added frequently to maintain appropriate levels. Because these batteries are not sealed, there is danger of acid spillage and explosion if the batteries are not handled properly. Despite these potential problems, lead-acid batteries provide the benefits of a two- to six-month longer battery life and up to a ten percent greater running time than other battery types.   Sealed lead acid batteries are maintenance-free versions of these batteries.   Because they are sealed in cases, it is unnecessary to add water and the danger of acid spillage is reduced or eliminated. The cases are vented to prevent gas build-up that can lead to an explosion. Finally, gel cell batteries are the most commonly used battery type on scooters. They are sealed in their cases and require no maintenance other than regular charging. Gel cells are the safest of the battery types, with no danger of spillage and limited risk of explosion. However, gel cells are more expensive, and may have a somewhat shorter life than other battery types.

Wheels and Tires - The size of the wheels and tires on a scooter have a direct effect on the scooter's ability to surmount obstacles and its stability. Scooters are generally equipped with six-, eight-, or ten-inch wheels, although other sizes may also be used. Some models use the same size wheels both front and rear, while others may have smaller wheels in front and larger rear wheels. Smaller wheels are generally found on front-wheel drive scooters intended for indoor use.  As a rule, the intended use of the scooter should dictate the size of the wheels and tires. The larger the wheels, the more stable the unit. Similarly the larger and wider the tires, the greater the unit's traction and capacity to manage such obstacles as curb cuts and uneven outdoor terrain.

Several types of tires are available for scooters. Manufacturers generally offer a specific tire as standard equipment, with others available as extra-cost options. Pneumatic tires include air-filled tubes and are similar to those found on automobiles. Air pressure should be checked regularly to maintain proper levels, and tires may need to be replaced if punctured. The addition of an anti-flat compound before inflation reduces the risk of tires going flat. They provide good shock absorption when properly inflated. Foam filled tires are similar to pneumatic tires, but include foam inserts rather than air-filled tubes. These tires cannot be deflated and, therefore, require less maintenance. They may be more expensive than pneumatic tires and may not offer a consistently comfortable ride. The least expensive tire option is the solid rubber tire. These tires require the least maintenance, but provide minimal shock absorption and are intended primarily for indoor use. 

Seating - The most common seat found on scooters is a chair-style seat similar to those found on boats. The basic seat is molded hard plastic or fiberglass, but most manufacturers offer a padded-seat option, usually with a choice of vinyl or fabric upholstery. Vinyl upholstery is frequently less expensive, but because it is a slipperier surface, it may not be the best choice for those whose disability makes it difficult to maintain position or balance.

Armrests - are another consideration in seating. Some scooters offer armrests only as an option; others offer fixed armrests as standard with flip-up armrests available.

Tiller - The control and steering mechanism for the scooter, usually containing the controls to drive the scooter forward or in reverse, as well as steering the front wheel or wheels. Most scooters offer one type of standard tiller with other controllers available as options. Possibilities include thumb levers, loop handles, joysticks, and others. Thumb levers are the most common controls, allowing the user to keep both hands on the handle bars while using the left thumb to power the scooter in reverse and the right to power the scooter forward. The amount of pressure applied to the lever will determine the speed of the vehicle (unless it is equipped with a proportional speed control). Consequently, a fair amount of hand control is necessary for safe operation. Finger control levers or a joystick may be alternatives. Some manufacturers may also be able to adapt controls to user requirements at extra cost.

The tiller itself is often an upright post attached to the front wheel. However, it is also becoming common to find flexible, accordion-style tillers which can be adjusted for height and/or position. This not only enables the user to place the tiller in the most comfortable position while driving, but also allows it to be moved up and out of the way during transfers. In the absence of a dashboard or shroud over the front wheel, a control box with the key lock, battery level indicator, speed controller, and other features may be
affixed to the tiller handlebars.

Since a joystick controls both speed and direction, scooters equipped with them generally do not have the post-and-handlebar tiller; the joystick is usually attached to an armrest or to an armrest extension, with a choice of right or left mounting. While this frees the space in front of the user and may accommodate easier transitions for some, the lack of handlebars may make transfers more difficult for others.

Other Accessories - In addition to the standard features common to all scooters discussed above, manufacturers offer a variety of standard features and optional accessories.  Most scooters are equipped with a key lock for turning the scooter on and off, thus conserving battery life and preventing unauthorized use; a battery-level indicator and a proportional speed controller to limit maximum speed.

A wide range of accessories also are offered on most scooters, such as crutch and cane holders, oxygen carriers, front and rear baskets, trailers, headlights, tail lights, horns, canopies, and others. Some manufacturers even offer sidecars to allow an additional passenger. As when purchasing a car, options and additional features increase the base cost of the unit, but accessories should be evaluated in light of their capacity to create a mobility aid which provides maximum user independence. At the same time, it should be kept in mind that some options may decrease battery life, maneuverability, and/or travel range.

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Other Home Medical Equipment

Bariatric products are designed to have a weight capacity of 300 pounds (or more) for those who need that extra support. Bariatric chairs maximize the patient's ability to sit and stand with reduced effort, and lessens the chance of lifting injury to the caregiver.

Bariatric beds have extra bracing integrated into the home care bed frame, along with a wider surface and truss assembly, in order to provide maximum support.

Portable lifting cushions - provide that extra lift needed to help you get in and out of any armchair on your own by shifting your weight forward and pushing off gently with your arms and/or legs. The pneumatic lift will help to gently raise you up to an almost standing position. The cushion is portable and weighs approximately 9 pounds and flattens quickly for easy transport.

Commodes - 3-in-1 Commodes are adjustable and include back, pail w/lid, toilet seat, and cover. Some can be used as a free-standing commode or a raised toilet seat. Lift/commode is a FDA registered medical device, ideal for people with musculoskeletal or neuromuscular limitations. It is motorized and designed to operate as a lift system and as an adjustable height commode. It can be used as a bedside commode (helps reduce bedpan use) or as a transfer system to move a person from a bed to a seated or standing position.

Compression Stockings - Problems with the veins of the leg occur in both men and women of all ages but certain factors increase the risk of venous problems. Health conditions, lifestyle habits, heredity, injury, surgery, age, and pregnancy all play a role. A broad range of compression hosiery from knee, thigh high, waist chaps, open toe and closed toe are manufactured to meet your needs. For more information: http://www.jobst-usa.com/

Continuous Passive Motion (CPM) - devices are available for synovial joints (hip, knee, ankle, shoulder, elbow, wrist, and TMJ) following surgery or trauma (including fracture, infection, etc). The device moves the affected joint continuously on a 24-hour basis, without patient assistance. The device is held in place across the affected joint by Velcro straps. An electrical power unit is used to set the variable range of motion and speed. The speed and range of motion can be adjusted depending on joint stability, patient comfort level, and other factors assessed intraoperatively.

Diabetic Supplies - Blood glucose monitoring - there are a variety of systems available that allow testing on arms, fingers or thighs, with fast and accurate results and minimal cleaning required.

Environmental Control Units - Permit remote control of electronic devices in the immediate surroundings. A person can independently turn lights, radio, and television on and off, answer or initiate phone calls, and unlock a door. Essentially any aspect of the environment can be controlled depending upon the system's complexity. For more information and products: http://www.makoa.org/ecu.htm

Hospital Beds - allow for positioning and safety not possible with standard beds. There are basically three (3) types of hospital beds available for home use: Semi-Electric Beds - allow for raising and lowering the head and the knee break through the use of an automatic hand-held control. Raising the entire bed height is accomplished through use of a manual crank. Manual Beds - allow for raising and lowering the head of the bed and the knee break through the use of a manual crank. Full or half-side rails are available. Full-Electric Beds - allow for the raising and lowering functions of the head and knee break, and the entire bed height adjustment is operated by a hand-held control.

T.E.N.S. dual channel units - a transcutaneous electro-nerve stimulator; pain control that goes where you do. A small medical device slightly larger than a beeper, attaches to your pants or belt and helps alleviate pain while you wear it.

T.E.N.S. units have been dispensed by doctors to their patients for home use. They operate on a 9v. transistor battery and have small wires and pads that adhere to a painful area and alleviate pain. Tiny free nerve endings secrete a chemical called "substance P" that transmits pain signals to our brain. T.E.N.S. units artificially stimulate free nerve endings, thereby depleting them of substance P, literally stopping the pain signal in its tracks.

Wound V.A.C Therapy - or negative pressure wound therapy uses negative pressure through a controlled suction device  to close large wounds and promote faster healing. This patented, FDA-approved device is composed of a sophisticated pump, hoses, and monitoring system held within a portable compact case weighing less than 20 pounds. It is recognized as an advanced line therapy alternative for patients when traditional dressing changes are not effective. It is a method that is  considered among recovering patients in hospitals, nursing homes, and other home health care settings. It meets the needs of most cost-effective modalities and an estimated 5 million American patients suffering from chronic or acute wounds.

For more information on Wound V.A.C Therapy & wound care management reference -
http://www.kci1.com/87.asp

Ostomy Supplies - Pouching system s- may include a one-piece or two-piece system. Both kinds include a faceplate/flange (barrier or wafer) and a collection pouch. The pouch (one-piece or two-piece) attaches to the abdomen by the faceplate/flange and is fitted over and around the stoma to collect the diverted output, either stool or urine. The barrier is designed to protect the skin from the stoma output and to be as neutral to the skin as possible

- One-piece pouching system - the ostomy pouch and skin barrier are joined together permanently. The pouch and skin barrier are applied and removed together-in one piece. Easy to apply and remove and more flexible than a two-piece pouching system.

- Two-piece pouching system, the ostomy pouch and skin barrier are separate . The pouch can be removed without removing the skin barrier. Because it is separate from the pouch, the skin barrier can be more easily positioned around the stoma.

Pediatric pouching systems are available as either one-piece products or two-piece products and are designed for premature babies, infants, and children. These systems can also be used to manage adult conditions such as small wounds, drain sites, and fistulas. Irrigation systems - Some colostomates can "irrigate," using a procedure analogous to an enema. This is done to clean stool directly out of the colon through the stoma. This requires a special irrigation system, consisting of an irrigation bag with a connecting tube (or catheter), a stoma cone, and an irrigation sleeve. A special lubricant is sometimes used on the stoma in preparation for irrigation. Following irrigation, some colostomates can use a stoma cap, a one- or two-piece system which simply covers and protects the stoma. This procedure is usually done to avoid the need to wear a pouch.

Urinary pouching systems - urostomates can use either one or two-piece systems. However, these systems also contain a special valve or spout which adapts to either a leg bag or to a night drain tube connecting to a special drainable bag or bottle.

For more information on ostomy and ostomy supplies:
http://www.uoa.org/ostomy_main.htm
http://www.hollister.com/us/

Bili Lights - (phototherapy) used to help infants with jaundice, a yellow coloring of the skin and eyes related to abnormal liver function.

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