Your Treatment, Your Health
Health care is not limited to a patient and his or her doctor. There are many people involved, and success depends on each person's willingness to contribute to the common goal of allowing the person with epilepsy to live with a high quality of life. Along with the doctor and patient, other people are part of the health team:
Health Team RolesDoctors and Patients
Doctors and patients are the foundation of every health team. They are partners who each have their own responsibilities in the health process and even though their responsibilities are not the same, they are still united by one common goal: to enable you to experience a good quality of life.
You should take a proactive role in this relationship. Be open and honest when meeting with your physician. Don't be afraid to ask questions or shy away from talking about sensitive subjects such as sexual desire or sexual functions. Your role involves not being passive and letting the doctor do all the talking. You should be involved with your own treatment and maintain a high level of communication with your doctor. You are also responsible for scheduling follow-up appointments with your physician.
A doctor's role is to examine patients, ask questions about their seizure activity, conceptualize treatment plans, fully explain the nature of the treatment plan to you, answer questions and prescribe medications to help control seizures. In the midst of these responsibilities, the doctors must meet with you for follow-up examinations to determine your treatment plans' effectiveness and, if necessary, to make any adjustments.
There are two different types of nurses: nurse clinicians and nurse practitioners. Nurse clinicians are responsible for answering routine questions, reporting lab or test results to you and explaining how to take a medication and providing information about potential side effects of the medication. Nurse practitioners, on the other hand, have advanced medical educations and are capable of performing more complicated tasks, such as patient examinations, ordering tests and prescribing medication. Neither type of nurse, however, is a replacement for a licensed physician. Nurse practitioners still receive supervision from doctors, who review case histories and devise treatment plans.
Physician AssistantsA physician assistant's role is just as it sounds. Their job is to help the doctor treat patients in a secondary role. Examples of physician assistant tasks include patient examinations, recommending therapy and ordering tests. They are also qualified to ask questions and gather a patient's medical history.
Social Workers/CounselorsA social worker serves as educator, counselor and watchdog. Social workers are responsible for educating patients and patients' family members, performing therapy sessions, identifying community outreach programs and referring patients to advocacy groups. Counselors are an incredibly valuable resource, although those who specialize in epilepsy are rare. Most social workers who specialize in epilepsy care are available through comprehensive epilepsy centers, but even then, not all epilepsy centers employ them. To find out if there is an epilepsy social worker in your area, call your local epilepsy center. If you do not know of an epilepsy center in your area, call your local Epilepsy Foundation affiliate for a list.
EEG TechnologistsAn EEG (Electroencephalogram) is an hour-long exam that monitors the electrical activity in the brain, and an EEG technologist is responsible for administering this rather involved test. As the test begins, the technologist gathers information about the patient, such as last meal, last seizure and current medications. After the technologist has compiled the EEG exam data, which appears as lines on a piece of paper or wavelengths, he or she presents it to the doctor for review.
The Epilepsy Foundation and Support GroupsEveryone needs a friend, especially a person having trouble dealing with a condition like epilepsy. The Epilepsy Foundation has support groups that are often directed by social workers. Some offices have counselors on staff. Doctors or other health care workers are also involved in some locations. Services can include regular group meetings, referrals for vocational rehabilitation and meeting with community groups and schools to provide information about epilepsy. For more information about local support groups and programs, contact your affiliate office.
Neuropsychologists are responsible for evaluating a patient's cognitive abilities, such as thinking, reasoning, memory, language, perception, motor skills and behavior. They do not prescribe medication, but rather work with patients in therapy sessions. Sometimes they will use electrical stimulation to map out areas of the brain where intellectual functions take place. An example of an intellectual function is the understanding of speech, both written and spoken. Neuropsychologists are also able to define what lasting effects head injuries like head trauma, strokes or tumors might have. This, in effect, gives them a better chance of outlining a successful treatment plan.Psychiatrists
Psychiatrists are physicians that specialize in mental illness and mental or emotional complications of medical illness. Sometimes they will use counseling sessions and psychotherapy to treat complications, and at other times they may recommend medications. Frequently, treatment of mental illness involves a combination of medications and psychotherapy and psychiatrists are uniquely qualified to provide both treatments.
Depression is a condition widely affecting people with epilepsy. According to recent studies, people with epilepsy are more likely to suffer from depression than those who are either considered healthy or suffer from asthma. A psychiatrist's role in the health team is to help a patient treat and manage conditions like depression.
There are multiple reasons why a person with epilepsy can benefit from seeing a psychiatrist, but one of the most important benefits relates to epilepsy medication and its neurological effects on the brain. A psychiatrist is may be able to identify whether a patient's antiepileptic drug dosage is leading to mental health complications or problems with memory or concentration. If the psychiatrist deduces that a person's mental health is suffering and he or she might potentially benefit from adjusting the dose of antiepileptic medication, the psychiatrist will team with the neurologist to make that recommendation.
Psychologists, like neuropsychologists, do not prescribe medication. Psychologists help patients cope with their illness and may provide psychotherapy much like a social worker. Psychologists may also provide educational assessments or testing to provide information about learning styles or cognitive abilities.
Few people with epilepsy require physical therapy, but for those who do, physical therapists are experts on movement and coordination disorders. Their treatment repertoire includes stretching, exercising and physical skill development.
Similar to physical therapists, occupational therapists focus on a patient's fine motor skills. However, an occupational therapist centers on the ability of such actions as writing, buttoning clothes or picking up small objects.
Speech-Language TherapistsA speech-language therapist helps a patient regain control of his or her speech, language and/or swallowing capabilities by identifying the nature of the patient's problem and implementing therapy. Sometimes the disorder happens because of motor control issues that can stem from brain or spinal cord abnormalities, damage to other nerves or injury to mouth and throat muscles. After identifying the problem, the pathologist tailors a specialized therapy program that addresses the patient's individual needs.
Vocational Rehabilitation Counselors
Vocational rehabilitation counselors are valuable resources for people with disabilities who lack the necessary skills to obtain employment. They teach the patient how to overcome the disabling condition and lend assistance in every detail from resume preparation to interviewing skills. The counselors are trained to identify a patient's strengths and weaknesses, determine his or her knowledge-level and then extract interests and aptitudes - all of which factor into formulating a patient's ideal career path. Once the individual's aptitude is determined, the counselor and client meet to outline worthwhile pursuits. In addition to resume writing and interview skills, the counselor also instructs the individual on proper work habits and suggests how to train for specific job functions. For example, if the person's typing skills are lacking, the counselor will suggest taking a typing class.
Epilepsy CentersEpilepsy centers are good places to become educated about the condition, meet other people with epilepsy, receive medical advice and request referrals to specialists. They are also the only places that can perform epilepsy surgeries and implant devices like the Vagus Nerve Stimulator— both of which are treatments for either controlling or eliminating seizures. Most of the physicians on staff at these centers are epileptologists, but there are also others available who can lend expert advice in areas of everyday life. For example, family planning is a service offered by most centers.
Some epilepsy centers specialize in children with epilepsy, others specialize in adults only, and others include both age groups. Not all centers perform medical procedures. Some might only offer consultations with epilepsy specialists and perform diagnostic studies. But for those centers that do perform operations, the types of surgeries may also vary. For a list of epilepsy centers in your area, call the Epilepsy Foundation at (800) 332-1000.