Thank you to those who took the time to answer my questions. All were very thoughtful, and I appreciate your kindness and support.

Rick McGirr <[log in to unmask]> wrote: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"
To:

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 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.
>
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