> Barbara Zimmer wrote:
> >
> > Item Subject: cc:Mail Text
> >
> > Hello all,
> >
> > My name is Barbara Zimmer.  I'm 43 and have had Parkinson symptoms for 9
> > years.  Due largely to unsuccessful communication with my neurologist, I've
> > been taking Permax and Eldepryl for only the last 18 months.  Prior to
> > that, under the apparently misguided illusion that I was buying time (for
> > the long term effectiveness of available drugs) I experimented with some
> > alternative medical  practices with variable results.
> >
> > The good news is, the Permax impact on my symptoms (tremor on left side and
> > more and more on the right, as well, shuffling gait, falling, shallow
> > voice) has set me back to where I was about 4 years ago.  I can now, among
> > other things, once again  enjoy playing the violin/viola, and run without
> > having my legs turn mushy or toes curl under.
> >
> > I consider my PD symptoms to be an unfortunate smudge on my life which has
> > otherwise been blessed with 5-year old twin daughters, a wonderful husband,
> > a loving, supportive extended family, and a challenging and rewarding part
> > time consulting job in the high-tech industry.
> >
> > I have a few questions to pose to the group, mostly having to do with
> > communicating about PD.  I'm sure I'm not the first to ask these questions so if
> > someone wants to just point me to past discussions, that would be great.
> >
> > 1.  What do you say to your young kids' friends and classmates when the
> > ask you why you're shaking?  Does anybody have any good one-liners or
> > short, helpful explanations?
> >
> > 2.  Bruce Warr's note on how he uses PD for teaching examples was  greatly
> > appreciated.  My work demands that I teach some classes and occassionally
> > facilitate meetings.  Does anybody else have some stories,  one-liners...
> > that would both help explain my symptoms and put people at ease?
> >
> > 3.  Has anybody had any experience with Rolfing?
> >
> > 4.  Are there any other runners out there?  Have you had problems with
> > tripping or mushy legs?   As a former competitive athelete (Olympic
> > Marathon trials 1984 & 88), I have found it somewhat difficult to deal
> > with the responses I get to my running now.  I imagine myself now looking
> > like I used to feel after running 26 miles.
> >
> > 6.  Do any other string players read the list?  Have you found any
> > exercises that help your playing?
> >
> > I look forward to more of your insightly sharing.
> >
> > Cheers,
> >
> > Barbara
> >
> > Barbara Zimmer
> > zimmer@ ce.hp.com                         (415) 857-4894
> >
> > Hewlett Packard Software Initiative
> > 1501 Page Mill Rd 5MR
> > Palo Alto, CA 94304
>
> Barbara
> I can only repond to some of your questions.  First concerning
> teaching, I also frequently am required to lead seminars and perform
>  training lectures for new people onboard.  Because of the nature of
>  my job I tell everyone assigned to the boat about my PD and how it
> affects me so when I'm in front of a group they all know about it
> already, most days my symtoms do not present a problem, however when
> I'm having a bad day I just have one of the training group do the
> writing on the board for me, to support this I've had to spend more
> time preparing by making up a crib sheet just in case I have to do
> this.  I have not had a problem anytime I've had to do this and the
> training was still effective.
>
> I use to enjoy running also, but had to give it up because the road
> kept getting harder and harder when I fell.  My initial systoms
> involved my right leg and resulted in a real bad stride, ruined alot
> of running shoes because I tend to drag my right foot.  I can still
> run a couple of miles if I'm having a good day and use alot of
> sinemet (1 hr before one 50/200 CR then 30 min before one 10/100
> then following the run I usually need another 10/100 to be able to
> walk, to much cramping in my foot if I don't).  My personal choice
> was to quit running, however I've started swimming more to make up,
> I don't have to spike up my meds so much (just one extra 10/100 30
> mins prior).  I don't burn the calories I use to but makes me feel
> better after a good swim, and that's what it's all about (besides
> I'm not gaining weight so I think the tremors are good for
> something).
> The more of us that go out into the world and do things with the
> normal(what ever normal really is) people and talk about PD the more
> it will be accepted.
> If you are interested in more info about running I think Gene Fair
> would be the best person to talk to. The APDA would be able to let
> you know how to get a hold of him.
>
> Aloha
> Pat Reilly
> Pat.EMCM.SS.WORLDNET.ATT.NET