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Will, Your response is excellent, informative and helpful. Thanks a lot. I always learn from you. I agree about not exaggerating PWP numbers. Lately, I have been saying an ESTIMATED 1.5 million in the US, and providing the sources. The New York office of he APDA provided the estimate of 3500 PWP's per Congressional District to us here in Maine, two years ago, when we were trying to get the Udall Act passed. Someone out there could probably get a research project going to survey the uncounted population groups of PWP's Will, do you remember seeing a post on the List about a Boston high-rise apartment building complex for the elderly, that a Masschusetts medical research team went to, where something like 150 of 500 residents, NONE of whom had EVER been diagnosed, showed visible signs of PD?? Could this Boston discovery add weight to the suggestion that there are probably closer to 1.5 million or more PWP's? Ivan On Sat, 5 Jun 1999 23:29:11 -0400 will johnston <[log in to unmask]> writes: >Numbers are important, but exaggeration can get us into trouble. > >My comments are marked XXXXXXXXX XXXXXXX. > > > Ivan Suzman on June 5 said: > >Subject: P.A.N. Petition UNDERCOUNTS PWPs? This is a controversial >message- >but it is necessary for me to get this off my chest. > >I take issue with the PAN Petition's accuracy. Numbers are VERY >important. > >Why is the PWP number only 1,000,000 in the Petition?I think that the >NPF >and the APDA both conservatively estimate 1.5 million American >PWP's. >Please help if I am incorrect. > >Even 1.5 could be a substantial undercount. Many, many >sub-populations of >unknown and UNDIAGNOSED PWP's, such as the instituionalized, the >high-rise >elderly, the poor, the rural, the ghettos and barrios of people of >color, >and those who hide in shame of their symptoms are well-known to >exist. > >+++++++++The most recent "official U.S. government estimates" I have >are >1990 figures from the OFFICE OF TECHNOLOGY ASSESSMENT [a joint group, >now >defunct, of the combined House of Representatives and the Senate] in >"NEURAL GRAFTING - REPAIRING THE BRAIN AND SPINAL CORD" page 3. >----------------------------------------------------------------------- >Neurological disorder Prevalence > >Alzheimer's disease 1 to 6 million >Stroke 2.8 million >Epilepsy 1.5 million >Parkinson's disease 500,000-650,000 >Multiple sclerosis 250,000 >Spinal cord injury 150,000 >Brain injury 70,000-90,000 [totally disabled from >head injury] >Huntington's disease 25,000 >Amyotropic lateral sclerosis 15,000 > >NOTE: Prevalence is defined as the total number of cases of a disease >estimated to be in existence in the United States at any given time. > >-------------------------------------------------------------------- > >Numbers get very fuzzy. If we count the undiagnosed, should we also >deduct >the false PD diagnoses which are estimated at almost 30% of PD >diagnoses? > >I have tried in vain to find some good hard numbers, but there are >none >available to my knowledge. I tried to get Sinemet production numbers >from >DuPont and was turned down flat. PD is not a reportable disease so >there is >nothing in the public records. > >+++++++++++++++ > > >There are also the unknown numbers of pre-symptomatic PWP's who >exist, in >the absence of a standard dopamine deficiency test before VISIBLE >symptoms >appear. > > The P.A.N. petition says there are 60,000 new cases per year in the >USA. >That means that every 16 and two-thirds years, the entire current >crew of >PWP's would all have to have died off.(60,000 x 16.67= 1,000,000) > > >+++++++++ > >The math here is right, but it one should think in terms of averages. >There is not a 100% turnover every 16.67 years. If the average age at >diagnosis is 59 years [there are no hard figures for this either], >that >would indicate an average life expectancy to age 76 which on average >isn't >too bad.. > >++++++++++ > > > Can P.A.N. 's petition numbers be changed before copies are >submitted? >They are almost certainly doing us a Disservice. >+++++++++ >The APDA, the PDF, and the NPF are special interest groups and want >to use >numbers that make the cause seem more relevant to more people. Just >because they use the higher numbers does not make those numbers right. > The >figure I use is a million plus or minus a half-million. That number >prompts >some readers and listeners to ask why I don't know how many of us >there >are. The mere fact that we don't know may prompt some to say that >something >should be done to identify the size of the problem. That could be a >help to >us in itself. ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 49/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses deg. F :-) ********************************************************************