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Ivan Suzman 47/10 Portland, Maine...land of lighthouses/le pays des phares... On Tue, 4 Feb 1997 20:43:07 -0500 Bob & Joy Graham <[log in to unmask]> writes: >Philip, >In my "lay" opinion, I understand Parkinson's Syndrome is used very >loosely >when a diagnosis is uncertain, when it could be something like PD but >of >the "Parkinson's Plus" variety. Often it is the GP who gives the >"syndrome" >tag when he/she doesn't want to scare the person Hi Joy, I get frustrated by doctors who call Parkinson's a "Syndrome." The different names create confusion. We can demystify this confusion through agreement on terminology and language. The language used by us is living, changing, and, organic . For example, the term, "PWP" has caught on more and more. I first tried it out in 1991, to emphasize that we are People With Parkinson's, who have lives beyond PD. We have dogs and cats, families, dreams and stories to tell. We may be gay men or lesbians, we may be homeless persons, we may be single mothers, or survivors of a holocaust. We may be AIDS researchers, neo-impressionist painters, fine cabinetmakers, organic gardeners, quiche bakers,or evangelists. We strive to have a much broader life than being defined ONLY as "victims" of a "tragic" disease. I feel that it is VERY helpful, among those of us who are willing, to try to create a uniform, global terminology applicable to Parkinson's. We must also be educators meanwhile, and explain the meaning of the terms we use. Here is a list of several of the sometimes interchangeable terms we use to describe our condition: Parkinson's Disease Parkinson's Syndrome Parkinson's Dopamine Deficiency Disorders Idiopathic Parkinson's Syndrome Parkinson's-like Condition Parkinsonism Shaking Palsy Paralysis Agitans Dopamine-related Dystonia Isn't it amazing that ALL of these terms are used interchangeably at certain times?? I personally tend to say, I have " Parkinson's DIsease," because these words are powerful and familiar ones. I acknowledge that "Disease" feels a bit scarier than "Syndrome." I feel, however, that there is an advantage in using the word "disease." I get the feeling that the word "disease" seems to make people realize that we are afflicted by a serious and life-threatening condition. When I use the "PD" term, I always explain that it is a disorder of movement due to a deficiency in our bodies' supply of dopamine, and that although it is frightening, that fear will be overcome if we work together towards understanding its chemistry and genetics. I feel cheated if a doctor tries to minimize the impact of Parkinson's by calling it a "Syndrome." I feel that this understates the HUGE impact on PWP's and our caregivers that PD causes. There seems to be recognition that we need help when we say we have a "Disease," but to say we have a "Syndrome" feels like some form of avoidance and denial, and perhaps undermines the seriousness of what all of us are up against. Once we are empowered with knowledge, the pathway to a cure becomes shorter. Ivan Suzman, 47/10, Portland, Maine ( land of lighthouses) 19 deg. BRRRR!