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^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 49/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses 62 deg. F :-) ******************************************************************** Dear friends, I have attempted here to develop a brief description of PD, building upon what was included in the March news announcement sent out with the Tutu Prayer. Please feel free to use it, wholly or in part. It is intended to provide useful basic information to groups or media you may be contacting. Ivan Suzman 49/39/36 Portland, Maine USA April 27, 1999 (April 11th, World Parkinson's Day, marks the birthday of James Parkinson, an English physician, who in 1817 was the first person to publish a detailed description of the symptoms of PD, describing it as "shaking palsy." April is therefore considered to be Parkinson's Awareness Month.) A BRIEF DESCRIPTION OF PARKINSON'S DISEASE - by Ivan Suzman Parkinson's Disease is a crippling, progressive movement disorder. PD seems to result from either an unexplained dormancy, or a gradual "dying off'" of brain cells located in an area in the upper part of the brain stem, identified from its darker color in post-mortem cross-sections, as the "substantia nigra." When plentiful and healthy, these cells produce a neurotransmitter, dopamine, which is critical to normal movement and reflexes. This shortage of dopamine eventually manifests as one or more of the classic symptoms of PD. These may include a slow, rhythmic hand tremor, painful muscle stiffness, severely limited, shuffling gait, and difficulties in maintaining balance while standing. As in the tragic case of Muhammad Ali, the voice often becomes inaudible. Intestinal blockage, loss of the reflexes of the pupils of the eyes, "masked" facial expression, depressed motivation, sleep disturbances and exhaustion can coincide in later stages of PD, which ultimately can be fatal. To date, there is no known prevention or cure for PD. Current medical and surgical treatments may reduce or minimize PD's symptoms, but these reappear if medications are stopped. Side-effects of medications often complicate treatment, and planning may become extremely difficult. Although PD is generally considered a disease of older adults, an estimated 15% of PD patients are diagnosed before the age of 50. An increasing percentage of patients as young as 20 are now recognized as suffering from "young onset" PD. There is some evidence that hints that an unknown, slow-acting virus may be involved in the eventual appearance of Parkinson's in some persons, and that either toxic exposure, or the inheritance of a rare genetic mutation may explain a considerable number of PD cases. Elevated instances of blood sugar-related conditions have been noted in the families of those with Parkinson's. Diabetes and hypoglycemia seem to appear frequently, both in PD sufferers, and in their families. In some countries, PD may strike as many as 10% of all people now over the age of 60. In Maine, current estimates suggest that up to 7,000 persons may be affected. Frequent misdiagnosis, the absence of a specialist clinic in Maine, and the common and confusing misidentification by the public of Alzheimer's as Parkinson's, all illustrate the great need for correct diagnostic standards, and for further education and training, even in the medical community. As elsewhere, many elderly people in Maine remain untreated. Despite the potential for improvement, if affordable access to medications intended specifically for the treatment of PD would become possible, the later onset Parkinson's outlook is still as dependent on shifts in the attitudes of policy-makers and society, as it is on advances in research and treatment.. The social and psychological impact of PD can be enormous. The tendency to remove sufferers of PD from the context of the family system still tends to predominate, resulting in prolonged institutionalization of patients.. Advances in long-term at-home care are emerging very slowly, with limited governmental funding in place, except in isolated examples. Pressure from PD sufferers and their caregivers for a "cure" continues to grow, making research on many aspects of PD an area of tremendous promise. Pope John Paul II, champion boxer Muhammad Ali, U.S. attorney-general Janet Reno, Gandhi photographer Margaret Bourke-White, evangelist Billy Graham, and actor Michael J. Fox are among those who have developed Parkinson's Disease. This description is provided by Ivan Suzman, 49, a member of the Parkinson Information Exchange Network, and currently in his 14th year of "young onset" PD. ---------------------------------------------------------------------