>Subj:  Great Resource!
>Date:  95-02-20 22:47:49 EST
>From:  >[log in to unmask]
>To:    >[log in to unmask]
 
>From: [log in to unmask] (Charles R- Matherly)
>Sender: >[log in to unmask] >(Parkinson's Disease
- Information Exchange Network)
>Reply-to: >[log in to unmask] >(Parkinson's
Disease - Information Exchange Network)
>To: [log in to unmask] >(Multiple recipients of
list PARKINSN)
 
>Hi All...
 
>My name is Charles Matherly, I am 35 YO and was diagnosed with >PD 3 years
ago.
 
>First, I would like to congratulate Barbara Patterson on maintaining >a
Great Resource for folks living with PD. I take great comfort >knowing that I
am not alone (ie.. early onset PD) in trying to lead a >normal productive
life with PD as a major part of it.
 
>Second, Today is my first day taking sinemet (I have been taking >eldypryl
since the diagnosis and will continue) and it was here that I >gained a lot
of the insight I needed to help me make the decision to >request the
prescription even though my symptoms are still >somewhat mild.
 
>Along the lines of sinemet, I would like to hear more about others
>experiences with it (good as well as bad).
 
>I would also like to here from other early onsetters about life in >general
and how they and their families are coping.
 
>My mail address is [log in to unmask]
 
>Thanks again Barbara, I look forward to learning and participating.
 
>Charles Matherly
 
 
Dear Charles,
 
Welcome to the board.  I am also another young PD patient - diagnosed @ 38,
and am now 45.  I enjoy the outdoors and spent my first years after diagnosis
soaking them up - went to Alaska three times, backpacked in the Arctic, and
climbed the highest peak in the  continental U.S. in ' 90.  The last couple
years the disease has slowed my boots down.  Like you, my early years were
almost untouched except for typing - I chose to keep it quiet except from the
most persistent inquisitors. I still don't know if that was a mistake.
Recently I have found myself withdrawing from people, as I get tired of
having to explain my problems.  When I tell people what my diagnosis is many
feel sorry for me - some immediatly think of dementia or that I'm going to
croak in a couple years!
 
I was optimistic enough to get married and buy a big new house in
' 91,  taking on a 30 yr mortgage no less!   However, we've pretty much
decided against the added financial burden of kids.  The last couple years
the Sinemet started failing me - the off periods longer, and the on periods
shorter - depression started to loom, and it became a bigger battle
maintaining my optimism.  Luckily my neurologist was able to pull Permax out
of her hat and this new drug has bought me a little more time, which does
wonders for my outlook.  However, reality adjustment is taking place: I have
been the primary breadwinner til now, but I expect to be able to work only
another year or two, and my wife needs to go back to school for four years to
get a good skill for a new career which will sustain us and her for the
duration  She is nine years younger and I will probably use all our resources
on my way out so she needs a good job for her own retirement after I'm gone.
 Needless to say we will have to sell the house and move to a smaller one or
to an apartment or condo to minimize yardwork and maintenance.  And now I
have to think about wheelchair access - climbing stairs will be as hard as
mountains used to be.   I' ve had a good life, but now it's time to look
forward and make the best of my new one.
 
That's where things stand now and that's how thing's have progressed over
seven years.  You're right, this board is a great resource.  I have been a
subscriber only the last couple months, and I wish I'd had it available
earlier.  It does make you see how many of us there are, each facing the same
problems in progression.  Now, if only there were a miracle......
Good luck to you Charles.  Hope this helps.
 
Curt Low ([log in to unmask])