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Rick - Congratulations. I sincerely hope it will continue to be good for you. If not, you can always GRADUALLY add it back until you find the right dosage. Best wishes. J Ann On Sat, 9 Apr 2005 12:43:38 -0400 Rick McGirr <[log in to unmask]> writes: > Hi, Steve, > > If your doctor seems to not be listening to you, he can't be able to > give you the help you really need. Look for someone with some > experience in neurology. But be your own advocate, and read up. > Not > every doctor knows a lot about neuro. disorders. > > I think it is good that you have been able to retire. But if you're > not as physically active, your muscles may lose their tone. This > may > contribute to your back problems. Once you've addressed the acute > problem, you should work to strengthen the muscles in the middle > third > of the body, which will in turn support the back. > > My own version of the story might answer some of your questions. I > am > going to be 52 in May. My first symptoms appeared about 5 yrs ago, > when my thumb started wiggling. When the doctor finally let on that > he thought it might be PD, I went into a tailspin, with the effect > that I was totally wimpy when it came to the symptoms. I asked Dr. > to > 'handle' them with prescriptions. So Doc put me on Sinemet, to go > along with the Selegeline and the Mirapex he had me on already. > Didn't realize at first, but the Mirapex was causing me to be sleepy > all the time, and even more depressed. I finally figured out that > my > self didn't like this drug, and the doc switched me over to Requip. > This made a dramatic difference for me. > > Note: any changes in meds that have been made have been gradual. I > didn't just drop a drug, but weaned on/off little by little. Also, > one's elixir may be poison to another. Proceed with great care, > consult with your Dr. > > So I was on Sinemet 25/100 3 times a day, and Requip. I also added > 300mg daily of coenzyme Q-10, to give my mitochondria a boost in the > energy department. Over 2 years or so, I've climbed up to the max > dose of Requip, 24mg/day. Since going off Sinemet, we've even gone > a > little higher, because I'm a pretty big guy, and just to maximize > the > enhancement of the neuro-receptors. > > There are some here who think the Sinemet should be resisted as long > as possible, because Sinemet has very bad side effects of its own > after 5-10 years of use. The dyskenesias are something that I do > not > want to experience, because that would mean that surgery lurks on > the > horizon. And I thought, well, I don't really know how much it's > doing > for me, because I've been on it since almost the start. > > Buoyed by all the wonderful examples in my life, including the great > people here, I decided to grapple with PD and not give up and not > give > in. I got tougher about the symptoms, and determined to make the > most > of whatever I may have left. So I asked my Dr. and he was > supportive. > This is the same Dr. who put me on the stuff to placate my > childishness. I think this responsiveness is desirable. I started > cutting back by one half-pill per day, very slowly. On my next > visit > I was down by 50%, and Dr. said the remaining amount was really > negligible, so I dropped the rest of it over the next week. > > So here I am. It's been a week now, and I'm handling it ok. The > tremor is a bit more stubborn and pronounced. The right leg is a > bit > heavier and more wooden. The right arm and shoulder are constantly > as > tight as the tie lines on a docked ship. I do extra stretching, use > mind power to insist that my body follows instructions (relax!), > deep > breathing, aerobic workouts, therapeutic massage, and last but not > least, once in a while a 'rusty nail' or a flagon of mead does serve > to relax. I'll check out a yoga class after my tax return is done. > > Basically I did it because I want to fight, to not give in, to > prolong > my useful life if I can. I know that I'm holding a losing hand in a > losing game, and sooner or later I'll get back on Sinemet, etc. I > am > not larger than PD. It'll get us all, if they don't figure out how > to > fix it first (a distinct possibility). But I am doing my best > Captain > Ahab. I'm obsessed with the leviathan, and I'm going to do my best > to > take it down, even if I go down with it. > > Kirk: I take it the odds are stacked against us, that the > situation is grim? > Picard: Yes. > Kirk: Sounds like fun. > > Enjoy your retirement. Congratulations. > > Rick > > > > > > ----- Original Message ----- > From: "Steve Forslind" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Friday, April 08, 2005 7:06 AM > Subject: Re: I'm off the stuff. > > > > Question from a newbee here. > > > > Hi, my name is Steve. I am 62 years old and I was diagnosed with > Parkinson's at 60. I was originally on Requip which worked > extremely > well symptomatically, but I complained of minor side effects, so at > my > request my neurologist switched me to Sinemet and Mirapex. The > symptoms (right-arm tremors & stiffness, shuffling walk) have gotten > slightly worse (than when originally diagnosed) over time, with far > too little of the alleged "on" and "off" times I hear about. > Basically, the Sinemet and Mirapex don't seem to have much, if any, > affect at all, but back then I had no idea that my med choices were > so > limited. > > > > > > > > It needs to be said that shortly after changing meds I retired > from > working as a maintenance mechanic on the midnight shift, so in > addition to changing meds I totally changed my schedule and > lifestyle. > > > > > > > > Due to these life changes, I've asked my neurologist a couple of > months ago to put me back on Requip; I think I'm in a better > position > to handle any minor side affects that might occur. Basically he > ignored my request, and said "See you in July". He displayed no > interest in a med change for me. I didn't pursue it; I had severe > low > back pain issues at the time. > > > > > > > > Dosage: (1) 25/100 Sinemet 3x day, (2) 0.25 Mg, 3x day > > > > > > > > Questions: > > > > > > > > Can one go back to Requip from Sinemet & Mirapex successfully, or > is > it a one-way street? I have no clue. The Sinemet and Mirapex seem to > be causing (in my opinion) more problems than they're treating. > Since > I started taking them, I've developed a problem in my lower back > that > causes great pain relieved only by two things; 6-8 hours of sleep, > and > not taking the PD meds for that same period of time. Right now it's > almost 11 hours since I took the Sinemet & Mirapex, and I feel the > best I'll feel all day. It's downhill from here. > > > > > > > > Should I seek the opinion of another neurologist? Mine doesn't > seem > to have time for me, let alone any real interest in my welfare. > > > > > > > > Rick: Why'd you get off the Sinemet & how'd you do it? > > > > Rick McGirr <[log in to unmask]> wrote: > > Today is day 4 off of Sinemet. Weaned myself right down to zilch. > I > > was on a low dose, 25/100 3 times a day. Symptoms a tiny bit more > > pronounced. They're not as bad as I thought they might have been. > > Attitude much more resilient. I can handle this. For now... > > > > Enjoy! > > Rick McGirr > > Email: [log in to unmask] > > > > Contact your congressperson and tell him/her to support H. R. 810, > > which would support ESCR using donated, leftover embryos from > > fertility clinics that would otherwise be discarded. > > > > > -------------------------------------------------------------------- > -- > > 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