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I don't mind your posting to the listserv. It's actually good therapy to share my concerns with you and everyone, as well as your reactions to my statements and answers to my questions, and vice versa. (Shades of "Fight Club"?) Funny then that I have this hesitation to go public on the local level. I was writing a piece as a 'listener commentary' for the local NPR station, and I...never finished it. Most people don't know yet that I have PD, and for now, while I'm still 'functioning within nominal parameters', I'd just as soon not announce it on the radio. I have piano students, I book gigs for the band, I freelance as a musician. It would just complicate things, with people always asking, "How ya doin, Rick?" with that extra-earnest tone, and wondering if I can still play. (Yes) There are those who know about it, and I'd rather they not ask. I know I know, my little buddy will end up eating me alive, I don't need to be reminded. I've come quite some way in accepting my... condition. (almost said 'fate'. Don't believe in it, never give in to it. Wouldn't be prudent at this juncture.) I've also gained a lot of toughness, partly through the energy and support I get from being a member here. Everyone shares that common bond that goes beyond the mundane-ness of religion and politics. What a boost it is to realize that. And I get a real boost from those on the list that have been battling for a lot longer than I. These people are the definition of the word 'tough'. Fear? Fear is having your town torn up from the sky. Fear is being the only survivor of an attack by machete-wielding militia. Fear is being an AIDS orphan. Fear is having to let go of one child to save another from a tsunami. Fear is sitting in a mud puddle waiting to die of starvation. PD? Piece of cake. Well, I usually wake up and write something. Thanks for being there, Ariela and all. Good morning, world. Rick ----- Original Message ----- From: "ariela" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, March 18, 2005 2:00 AM Subject: Re: (my progress report) / AMANTADINE... ? / calibration > i admire your resilience, rick. you seem to go about fighting this disease with great courage, and heads-on! alas, my PWP (bless his heart) would rather think as little as possible about his condition. his philosophy is, 'i got plenty of time to contemplate this lousy disease when i'm off, why waste additional energy when i'm on.' incidentally, when he is on, even if dyskinetic, he functions better than many perfectly healthy adults i know... :) > > now re. DBS -- for a moment there i felt like sitting across a movement disorder specialist, just wanting to wring their neck for stubbornly asking this question yet again.... :( > > truly, this must be my all time pet peeve -- for chrissake, why even float this option before exhausting any and EVERY possible drug combination first??? has anyone else had that experience? what else is there for treating PD if not drugs? i know that DBS, unlike pallidotomy, is supposedly reversible (considering there's no ablation), but isn't this argument rather disingenuous, to say the least? can you really believe that implanting electrodes directly into the thalamus, only to revisit after a while and remove them, would leave that tender organ called brain completely unaffected? if nothing else, just think 'scar tissue'! not for nothing this delicate mass was encased in a skull (unlike other fine and sensitive organs we have)! > > but to go back to drug therapy -- my experience has been that doctors have their preferences for a particular regimen, and that's that! you'd think they'd be blamed for running unauthorized experimentation, the way they stick to their original drug choice and prescription! > > oh, well. incidentally, for the record, hear! hear! re. splurging on massage, exercise and the like. i can attest first hand (ok, first witness) how important that is. the trick though is to NOT concentrate so much on aerobic or anaerobic exercises (bulking up and/or cardiovascular workouts) but rather, concentrate on STRETCHING. it should not be done with the goal of expending energy/calories, but rather coaxing the joints and muscles -- EXTERNALLY -- into remembering (i.e., keeping) their limber state. > > when he is in israel (where he spends most of the year), my friend does HYDROTHERAPY, a treatment modality that has not quite made it to the states yet (i wonder why; perhaps because it's so obvious and simple... ?) it's an amazing therapy that can best be described as a therapeutic massage in a small pool. he gets out of such sessions not only loose and flexible, but if he starts while in 'off,' it's as good as getting an apokyn shot. > > anyways, there's a lot to be said -- and compared -- on this disease, and i'm much obliged for having this informative listserv... :) > > thanks for writing me, rick, and please do report on what you find about amantadine once you speak to your doc. > > best, > ariela > > ==== > > > Hi, Ariela, > > > > I will look at amantadine, so I know what to say in reply. I don't > > know much about it, only having glossed over the info to date. > > > > I am not far enough along to have experienced diskenesias myself. But > > in the time since I discovered my little buddy (fall 2000) I've gotten > > a lot tougher. I must say, if I knew then what I know now, I might > > have not been so quick to use Sinemet. In the early going I was > > rather wimpy. "I will gladly pay you Tuesday, for a hamburger today." > > Just get these jitters out of my arm! > > > > I must say that Sinemet has been bedy bedy good to me. ;-) I haven't > > yet had any of the bad side effects. I just thought that now, while I > > have the strength and can better cope with the PD itself, might be a > > good time to really work on prolonging my usefulness as much as poss., > > and to put off the bad side of Sinemet as long as poss. > > > > My neurologist told me that I now am at the top end of the usual > > dosage of Requip, but to aid my efforts to cut back on Sinemet, he has > > prescribed 10mg 3 times a day (up from 8 x 3). Haven't started on 30 > > per day yet. I'll keep you posted. > > > > I really hope your PWP can get some relief, and some regularity out of > > drug therapy. Remember there are the surgical options as well. Have > > you discussed DBS with your doctor? > > > > I also take selegeline, for the record, and an energy-boosting > > supplement, CoQ10. And I'm always stretching and doing relaxation > > breathing, and every once in a while, I'll splurge on therapeutic > > massage. $60 is a bargain for that kind of deep, if temporary relief. > > Every little bit... > > > > Good luck, Ariela. > > > > Rick > > > > ----- Original Message ----- > > From: "ariela" <[log in to unmask]> > > To: <[log in to unmask]> > > Cc: <[log in to unmask]> > > Sent: Tuesday, March 15, 2005 3:01 AM > > Subject: Re: (my progress report) / AMANTADINE... ? / calibration > > > > rick, > > > > a new movement disorder neurologist we've now been seeing at mount > > sinai in new york has told us that amantadine is the drug of choice > > for dealing with dyskinesia. it's the first i hear this take about > > this little-used drug.... but we're still keeping this option open > > as my PWP is now trying stalevo (after 4 years on sinemet + requip). > > he's having an awful time just getting calibrated -- he moves > > instantaneously between long and painful freezes to awful states of > > badly spastic dyskinesia. there's just never a simple 'quiet,' > > 'calibrated' time. it goes without saying that the dosages and > > frequency have been tweaked and re-tweaked, to not much avail... :( > > > > does it sound familiar to you, or anyone on the list? can anyone > > please share what you do/have done/know about it? ( > > > > many thanks, > > ariela > > > > ==== > > > > > But I just figure it might be worth a little extra pain in order to > > put off those nasty > > > diskenesias.... > > > > > > Enjoy! > > > Rick McGirr > > > > > > -------------------------------------------------------------------- -- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn