Rick - Many of us have that same goal. The bottom line is, I'd love to find a cure for my love and others before it's too late. Thanks for the note. Jo Ann On Sun, 20 Mar 2005 11:12:40 -0500 Rick McGirr <[log in to unmask]> writes: > 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 > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn