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At 7:01 PM 11/26/98, judith richards wrote: >> But it is unusual for Parkinson's to strike someone as young as Fox, >> said Blair McRobie, president and CEO of the Parkinson's Foundation of >> Canada. In the vast majority of cases, the disease strikes people over >> the age of 55. An estimated 1% of people over 55 will suffer from the >> disease in their lifetime. > THE DISEASE IS, ON A-V-E-R-A-G-E, DIAGNOSED AT AGE 57. BASICALLY, WITHOUT GETTING INTO THE DISTINCTION BETWEEN ARITHMETIC MEAN AND MEDIAN, ONE-HALF ARE YOUNGER THAN 57, ONE-HALF ARE OLDER - AT THE TIME OF OFFICIAL DIAGNOSIS. AT LEAST, THAT IS THE PARTY LINE WE HAVE BEEN SPEWING TO THE U.S. CONGRESS =46OR THE LAST 5 YEARS, IN A HERCULEAN TASK TO OBTAIN INCREASED FUNDING FOR PD RESEARCH. I THOUGHT WE RECOGNIZED THAT "DIAGNOSED" IS NOT THE SAME AS "STRIKES." IT TAKES YEARS FOR 80% OF ONE'S DOPAMINE PRODUCTION TO DISSIPATE SO THAT A DIAGNOSIS OF PARKINSON'S CAN BE MADE. I WAS DIAGNOSED AT 57, BUT I LOOK BACK ON MY SYMPTOMS AND THEY BEGAN AROUND AGE 48 OR 49, WHEN I INITIALLY NOTICED CHANGES. BUT MY LOSS OF DOPAMINE BEGAN YEARS EARLIER, PERHAPS IN MY LATE THIRTIES! SO WASN'T THAT WHEN I WAS "STRICKEN?" MICHAEL J. FOX, DIAGNOSED AT 31, PROBABLY STARTED LOSING DOPAMINE IN HIS EARLY TO MIDDLE TWENTIES - SO HE WAS "STRICKEN" EVEN EARLIER THAN WE ARE BEING LED TO BELIEVE. BUT, LET'S NOT FRIGHTEN THE PUBLIC, RIGHT MR. BLAIR? WORDS LIKE "STRIKES" AND "ONSET" SHOULD BE EITHER CLARIFIED AND UNIVERSALLY ACCEPTED OR DISCARDED FROM USE BY REPUTABLE AGENCIES LIKE THE PF OF CANADA, THE APDA AND THE NPF. BETTER YET, ALL THE NORTH AMERICAN PD ORGANIZATIONS, WHOSE EXECUTIVE MEMBERSHIP IS DEVOID OF PERSONS SUFFERING FROM THE ILLNESS, SHOULD SIT DOWN AND AGREE UPON THE BASICS: HOW MANY OF US ARE ILL WITH THIS DISEASE, WHEN, ON AVERAGE, DO WE GET IT, AND HOW MUCH DOES IT COST SOCIETY AND THE PARKINSON'S FAMILY? I CAN'T BELIEVE THAT, WITH ALL THE TIME THE RUMOR OF MR. FOX'S REVELATION WAS ON THE LISTSERV, OUR ORGANIZATIONS DIDN'T HAVE TIME TO PREPARE AN IMMEDIATE RESPONSE, HAVE A PUBLIC RELATIONS STRATEGY, OR IN SOME WAY POSITION THEMSELVES TO RESPOND IN A WAY THAT WOULD SYMPATHIZE WITH MR. FOX AND USE HIS ANNOUNCEMENT TO SUPPORT THE CALL FOR MORE RESEARCH FUNDING. MAYBE IT IS STILL COMING. I SURE HOPE SO. >I can't believe I'm reading this!!! So many of us have been working so >hard to promote awareness because more and more young people are being >diagnosed. Following are excerpts from a NPF press release which >emphasizes this fact. > >Company Press Release > >SOURCE: The National Parkinson Foundation, Inc. > >The National Parkinson Foundation States Parkinson's >Disease Becoming More Prevalent Among the 'Young' > >Young Onset Patients Have Special Needs > >MIAMI, Nov. 25, 1998 /PRNewswire/ -- According to the National Parkinson >Foundation (NPF), Parkinson's disease has been >labeled ``a disease of the elderly,'' but statistics don't support this. >The average age of onset is currently estimated to be about >55, with 15 percent of patients diagnosed below the age of 50. Recently, >NPF medical experts have confirmed the diagnosis of >two individuals under the age of 13. > >Parkinson's often goes unrecognized in the young for several years after >symptoms first appear because doctors don't expect to >find PD in people who are in their thirties or forties. Thus, it is >important that any individuals displaying the symptoms of >Parkinson's disease be seen by a neurologist specializing in movement >disorders for further diagnosis and treatment. > >The National Parkinson Foundation recognizes that young-onset >Parkinson's patients have special needs. These individuals >often have children to raise, jobs to keep as well as other issues they >must address that are different than those patients in >retirement years. The first hurdle for the young person is to accept the >diagnosis, get a realistic idea as to what to expect and >make plans for the future that will help him or her cope with the >ailment. > >-- >Judith Richards, London, Ontario, Canada ><[log in to unmask]> > ^^^ > \ / > \ | / Today=92s Research > \\ | // ...Tomorrow=92s Cure > \ | / > \|/ > ```````