Horse Whisperers was filmed in my state of Montana.  One of the technical
directors is a neighbor of our.  He and his family had a very short spot in
the film.

My husband, Don, has been diagnosed for around 15 years.  At the very
beginning he said "I'm going to pretend I don't have it"  It was up to me to
do the research and keep up on all the new drugs etc.  I was the one who
found specialists to visit.  He will try everything I think might be a
benefit to him, and we have tried lots.  He hardly never complains and works
12 to 14 hour days 7 days a week.  On nights that he has trouble sleeping he
might take a short power nap after lunch.  I wish all the on the list could
be doing as well as he is, but I think his positive attitude and all the
exercise he gets because he has to has kept him going.  We are going to
Brazil in September for the World Simmental Convention.  He is one on the
list who is still active.  He was diagnosed around age 50 and is now 64.  I
think I worry more about the future than he does.  I keep telling him we
have to downsize so that we can do all the things we want to before it is
too late for him.  He is patiently waiting for a Cure.  He wouldn't consider
any kind of surgery because he wants to be in one piece when the cure
arrives.
Enough of my rambling.  I've still got 72 messages to look at.  Greeting
from Montana, the Big Sky Country.  Nancy B cg for Don 64/15

I really feel for you having to hire caregivers.  We have a friend in Canada
who is paralyzed from the neck down.  We stay with him every year when we
take cattle to the fair in Edmonton.  I have seen the struggle he has had
with caregivers.  They have even stole from him.
-----Original Message-----
From: Ivan M Suzman <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Monday, August 10, 1998 12:20 AM
Subject: I broke down and cried at the movie theater


>^^^^^^WARM GREETINGS  FROM^^^^^^^^^^
>Ivan Suzman      48/12                 [log in to unmask]
>Portland, Maine   land of lighthouses     68    deg. F
>***********************************************************
>On Fri, 7 Aug 1998 12:32:26 -0400 Jed Blue <[log in to unmask]> writes:
>>People out there,
>(SNIP)
>>Actually, I like the idea of the Hourglass.
>>Hilary Blue
>
>Dear Listfriends,
>
>Good news and bad news from a 12th--year PD survivor.
>
>Thanks to more Tasmar, summer heat, and more activity, I am a little
>better again...temporarily......
>I have upped my Tasmar to 250 mg /24-hour day,  and my Sinemet is staying
>at 800 mg/24-hr. day..  I have to split the 100 mg Tasmar tablets with a
>pill-cutter, into halves and quarter-tablets.  The manufacturers ought to
>consider making lower dose pills, so that we pill-cutters are able to get
>uniform 25 mg and 50 mg doses.
>
>I stopped NADH-no money to buy it-and a public thank you to Bruce
>Anderson, who sent me a 90-day supply last winter.. It helps, but it is
>way too expensive.
>
>I've been watering and pollinating my tomatoes. They are slowly emerging
>from the golf-ball stage to something larger, and more tomato-shaped. I
>have planted and watered 15 new tiger lilies.  I have finally re-painted
>the entire back deck, stairs and wheelchair ramp! But I am still
>exhausted from the endlessly-tiring caregiver search.  Right now, at
>least I'm not despondent.
>
>Like Jacob, I want a cure NOW...a friend took me to the movies last
>night- Horse Whisperers.  When Stacy broke down crying and her mom hugged
>her,  after she told her mom that, with her amputated leg and prosthesis,
>noone would EVER find her to be desirable, I started BAWLING in my
>theater seat, right in front of everyone. I felt just like Stacy did. I
>just lost it-tears tumbled right down my face. This caught me completely
>unprepared-I finally wiped my eyes on a bandana stuck away in my back
>pocket.  My glasses steamed up, I was sobbing uncontrollably.
>
>I was hoping Robert Redford had a tremor and would join our fight against
>PD!  Crazy, unfair  thoughts. I was hoping OPRAH would invite me on her
>show before I am too worn out to help our cause.
>
>Sometimes I feel like only a saint would be interested in being around
>me--I have been left by friends and  relatives because of PD.  I have to
>endure MANY hours alone, including off-states and dyskinesias. The world
>of worshipping the dollar has no time for pokie Parkinsonians like me!
>
> Sometimes, I am alone at home, and I end up trying to make sense of my
>life as it is, and giving up and sleeping on the sitting room floor,
>when noone can be found for 4 to 7 hours at a time to help me out.  I
>start asking the what if's, like, what if I had a child? what if I lived
>with mfy aunt? what if I gave up my house? what if I stopped taking
>Sinemet, and died in a frozen state in my sleep?
>
>Why are caregivers supplied only $6.25/hour by the state of Maine??  Is
>this universal for personal care attendants who you don't pay yourself,
>due to your own low income??
>
>I'm in my 12th year of PD.  How do those of  you with 10 years of PD. or
>more, deal with ACCEPTING PD, when you know it is getting worse and
>worse??  I do feel like my time is running out.  And that is pretty
>scary.  I think my PD is progressing rapidly lately- has anyone noticed
>how FEW of us are active on the list who have had PD 10 or more years?
>
>Ivan 48/12
>