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> 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