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.
> >
> >
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