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)
>
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