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Very nice and motivational, haroon On 8/23/08, [log in to unmask] <[log in to unmask]> wrote: > Joan, > I was dx in the early 90's and will be 64 years old tomorrow.....I have > followed this list for most of its existence, seldom posting anymore. (Linda > > Herman was thoughtful enough to include some of my poetry from the early > days in > her 'when Parkinsons strikes young' book.) > > However, your letter describing 'what I miss' is one that I had saved in my > own special archives file. I copied this letter to my own children when it > was first posted. I have on several occasions shared it with friends who > have > had a family member newly dx'd. I believe this letter so accurately > describes changes in our lives. > > I do have a grandson with a rare form of muscular dystrophy....and I have > learned over the years while watching Griffin, that we are not the only > group of > people who are robbed of the subtleties of life. We are not the only > people who are hard to dx, who have a degenerative disease, who science does > not > have the answers for. We had a promise of a 5 year cure......Griffin had a > promise that liver transplant would cure his disease. He is now 9 years > post > liver transplant (10 years old) and we see his loss of muscle strength and > other declines each time we visit. > > My husband is a biochemist (molecular biologist) and I see the steady > progress that science makes first hand on a regular basis. Sometimes it is > two > steps forward and one step back....some times it marches in place for years > awaiting a newer technology. Science doesn't move on a regular time > table...."scientist know no time" said Leonardo daVince centuries ago. > Ironically, Mark > Wilson, who identified the first Parkinsons related gene as a part of his > post-doctoral work on the East Coast, is in the lab/office next to my > husband > now....at University of Nebraska- Lincoln. > > I have done my 'political bit'; I have done my 'education bit'; I have done > my 'voice of pd bit' and I still continue to dabble in PD as my interest and > > energy allow.....but mostly it is answering questions for newly dx'd friends > or families.....'what will happen next?'. I am one of the fortunate ones > to > have had fairly slow but steady progression......I can still walk from my > car > to the front door at Walmart before I use the electric cart. The flowers > in the yard bloom in appreciation of the care that I used to be able to > give > to them. > > I have not given up hope that some day others will have a treatment/cure > that works better than what we have today...but most of my extra energy now > is > spent sewing (all machine work, I have lost the fine motor skills for tiny > hand > embroidery) burial clothing for premature infants and crib sheets etc for > the local shelter for abused spouse/family members. > > PD has changed every minute and every second of my life for the past 20 > years. As you say so well.....the first loss came in self confidence as > doctors > and family denied symptoms for those of us 'too young to have PD'. > Friends > and family have died in accidents, from cancer, and from heart disease > during > that time period. Friends and family have lost precious time and skills > with strokes, muscular dystrophy and Alzheimers, etc. > > We have all lost so much more than the precious moments your letter > describes..........and we all continue to give so much more than we will > ever know. > > Thanks, > Rita Weeks > > > > > > > > **************It's only a deal if it's where you want to go. Find your > travel > deal here. > (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > -- Sent from Gmail for mobile | mobile.google.com ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn