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> I've been reading the mail for several months now, after being diagnosed in >May '96, at age 62, (with symptoms for preceding year or more) and I've >learned so much from so many of you. > So far, my difficulties are mild by comparison to what many of you must deal >with, and my medications (Eldepryl and Sinemet CR 50/200) have been of >considerable help so, while I am not in denial nor depression, I have not made >my P.D. known to anyone but my wife--not even my children and grandchildren. >This is probably less my pride than my sense of shame, which troubles me. >What am I ashamed of ? A mutant gene, an exposure to hazardous substances, >dying brain cells, ...? > Have lost most of my sense of smell (noticed that peeling a fresh tangerine >which might as well have been a pea pod). My face, which hasn't expressed >much most of my mid-life, is now Quixotic, to say the least, but with effort, >I can still create a grimace that will pass for a wry smile. My voice, which >was never resonant, is losing volume. Right side rigidity inhibits most >favorite physical activities, but I can still walk and with conscious effort >can swing my right arm almost normally. So, you see, no one knows... > I tell myself there is no reason to cause them needless worry, they can't >help me, and I don't want sympathy or pity from anyone, although eventually >they will all know, of course. What I think I will need, when the time comes, >is their tolerance and understanding, maybe even empathy, but before they have >a need to know ? > I would appreciate hearing from any listserv members who have struggled with >this issue, and to know how, when and why they have resolved to disclose or >not to disclose. > God Bless us, everyone > Jack Peckenpaugh > s Jack Your letter amazes me. As somebody with a similar onset age and initial symptoms I find it almost inconceivable that anybody could be able to conceal their symptoms from friends and family.Are they so unobservant or do they live in some other country ? Even with very mild inititial symptoms everybody round me knew there was something wrong and close friends would comment to my wife ( not in my presence).'What's up with David - he's got a funny walk.' The only person I didn't tell initially was my wife as she at the time had just nearly died after open heart surgery but all the children , friends and business associates were told.I advise telling people as it as they can then stop worrying what dreadful affliction the old boy has got or if he is going off his head or becoming an alcoholic.When they know he has only got Parkinsons they are generally greatly relieved as most people don't regard Parkinsons as being any great deal in comparison with other afflictions and they can then go back to thinking about their own personal worries.Very very infrequently you will find somebody who shows a real interest in Parkinsons and then you have the opportunity to 'educate them' and they might end up helping to support the Udall bill.If your kids are normal they will just think 'poor old dad' and within a week or two be back at asking you to help hang a door or paper out a room. Parkinsons as you will have found on this list for some people can be very unpleasant but it is not a life sentence, millions have it and should not be elevated into a category where mention produces an embarassed hush. There are no medals for grinning and bearing in silence. No medals either for boring the pants off people by endless discussion.Some young onset people for financial reasons might not want to tell their boss but that raises a whole set of different issues. David Langridge