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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