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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