Rick - What a wonderful piece of writing. No wonder you are wanted by the NPR station. However, I don't think you should worry about what "other" people think. It is what YOU think that matters in your progress. Of course, I speak with tongue in cheek, because I don't have PD. However, I had a quad by-pass in August 2003 and a mastectomy in August 2004 (something about August, I'm already dreading for 2005). I also was hospitalized for 5 days with a staph infection. Each time, I held my head up high and did my thing. I play the piano for my church, and in 12-1/2 years, I only missed a Sunday when I was hospitalized. Three weeks after my quad by-pass, I drove myself to Church and played, and same with my mastectomy. So even though I've not experienced PD, I still feel I can say, Attitude is very, very important. Best to you - again. Jo Ann On Fri, 18 Mar 2005 09:48:25 -0500 Rick McGirr <[log in to unmask]> writes: > 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 > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn