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Jo Ann, I would love to write my treatise here. I would love to give the world an earfull of what I think, my core beliefs, and my own personal babble. But that would not prove I am correct. I have learned that tolerance is a very important key to living in this fast, crowded world. The greatest teams are formed from diverse candidates, and in that way the potential of those who post here is very dynamic. We have a common goal, a common desire, a need to be well. Someone said we could potentially (there's that word again) see major progress in the near term, so we're very hungry for it. I feel a great restlessness here. No, I mean right here, in the pit of my stomach. But I'm sure you do too. Anyway, I'm happy to be here, happy to read everyone's posts, and I'm ready to team up with this group, even tho there must be a complete range of political and religious 'slants' among members. I'm wordy sometimes, but after all, I'm a bottom line kind of guy. And bottom line is, where's my cure? Everything else is less important. Thanks for being here, everyone. Rick ----- Original Message ----- From: "Jo Ann Coen" <[log in to unmask]> To: <[log in to unmask]> Sent: Saturday, March 19, 2005 12:39 PM Subject: Re: Ariela/ posting vs. private message > 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn