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I thought this may help about Young-Onset PD for our friends in Denmark. THE YOUNG PARKINSON S PATIENT By Erwin B. Montgomery, Jr., MD Reprint from YPSN, Movers & Shakers New Member Packet Editor's note: This article appeared in the Parkinson News & View, Southern Arizona Chapter APDA, June / July 1994. It is reprinted with their permission. Dr. Montgomery is an Associate Professor of Neurology at the University of Arizona College of Medicine and advisor to the Southern Arizona Chapter of APDA. There is a misconception that only old people get Parkinson s disease. While it is true that most Parkinson patients develop the disease in their late fifties or early sixties, we know that at least 8 percent develop the disease younger than 40 years of age. There is growing concern that the number of young Parkinson patients is increasing. It is unclear whether the disease is actually increasing among the young or we are just recognizing it more often. We know that Parkinson s disease affects the young and old in different ways. Parkinson s support groups, educational organizations and publications have started to address these differences more directly in recent years. Young patients tend to have more tremor, but better balance and walking. Young patients sometimes have more involuntary movements or dyskinesia in response to medications, but have fewer problems with thinking abilities. The disease progresses at a slower pace for the young patients, and they are better able to tolerate some of the side-effects of the medications. The psychological and social impact of PD on a working person with family responsibilities is different from the impact on a retired person whose children are grown and out of the house. Many young patients are very concerned about whether they will be able to keep their jobs and continue to support themselves and their families. In my own practice I have seen many young patients forced to retire prematurely. There are psychological factors related to job loss that go beyond financial considerations. Individuals may not be prepared for the drastic changes in lifestyle associated with forced retirement. There is often a loss of self-esteem and the attendant risk of depression. There are laws to protect working Parkinsonians from unfair termination (Americans with Disabilities Act). However, despite these laws, finding or maintaining a job can be extremely difficult for the young patient. The Cost of Medical Care Another unique concern of the young patient is the cost of medical treatment. Often young patients are many years away from Medicare eligibility and must rely on health insurance provided by their employers. This dramatically increases the concern about maintaining a job. Many health insurance companies have clauses that exclude benefits for pre-existing diseases. This means that young Parkinson patients are at risk of losing their medical coverage if they change jobs. Thus, some young patients find themselves unable to advance in their careers. The future of health care delivery is under intense debate, both nationally and on the state level. The Parkinson community, particularly young Parkinson patients, needs to take an active voice in determining the shape of future health care. They should act aggressively in making sure their state and federal representatives understand the need to do away with the pre-existing condition problem. Medical Care of Younger Patients The medical treatment of young Parkinson patients is different from that of the more elderly patient. The young patient has to anticipate dealing with the disease for many years. There is evidence suggesting that how a patient is managed early in the disease can have a profound impact later in the disease. The issue of slowing the progression of the disease and delaying complications is of importance to all patients, but of paramount importance to the younger Parkinsonian. Unfortunately many physicians do not understand how early treatment decisions can affect long term outcome. There is concern that long term exposure to levodopa can increase the risk of developing complications. This has led many Parkinson experts to use medications other than levodopa such as direct dopaminergic agonists (Pergolide or Permax., Bromocriptine or Parlodel.). These medications are used less frequently in the elderly because of the high risk of side-effects. However, younger Parkinson patients can tolerate these medicines much better. Early use of these medications can delay the time that levodopa therapy must be initiated and perhaps delay the onset of complications from long term levodopa use. The Problem of Denial All patients and caregivers have to put up with misconceptions and prejudices about Parkinson's disease. However, these misconceptions and prejudices may have a greater impact on younger patients and their families, who often bear a greater burden in trying to hide their illness from neighbors, employers and coworkers. This leads to a state of denial where patients ignore or minimize the effect their illness has on them and those close to them. This denial may keep younger patients from seeking the kind of help that could make a significant difference in their lives. It is difficult to get young PD patients to attend public education programs or support groups, partly because information is often geared toward the elderly or more severely affected patient, and partly because of a genuine reluctance among younger patients to be associated with this illness and its elderly patients. Often younger patients deny the existence of their disease even when the symptoms are quite obvious to everyone around them. It is very difficult to say how this situation should be handled. A great deal depends on the exact circumstances. Young PD patients may wish to discuss this issue with their physician, or with a psychologist or social worker. Children are often astute observers of symptoms and will become alarmed if their Parkinsonian parent insists that nothing is wrong when problems are obvious. Many children of Parkinsonians are reassured when told that although their parent does have an illness that won't go away, the disease can be managed. Consulting your doctor or a counselor can be helpful in specific instances. Resources for Younger Patients Little is known about the unique effects Parkinson's disease has on younger people. Most of the medical textbooks have been written based on experience with elderly patients. It has only recently come to light that significant numbers of young people develop Parkinson's disease. As health care professionals, we need the young patients to educate us, so we can understand what they are facing. We urge younger Parkinsonians reading this newsletter to contact APDA's Young Parkinson's Information and referral Center in Santa Maria, California and to become part of their national data base. Call (800) 223-YPSN to request their questionnaire and other information. We also encourage younger Parkinsonians everywhere to make local organizations aware of their particular concerns. And, please, attend your local Young Parkinson s Support Group meeting. END Regards, Alan Bonander ([log in to unmask])