Hi all,

        Well, golly gee whizzzzz. I finally have an on-topic post for
     the list and it "got lost" in the "mix." Oh well, I hope the
     list-folk don't mind a little repetition ... I'll try again:

> Date: Tue, 25 Apr 2000 22:44:41 -0400 (EDT)
> From: "William A. Parrette" <[log in to unmask]>
> To: Parkinson's Information Exchange Network <[log in to unmask]>
> Subject: Six of one, half-dozen of the other -- some NON-PD & some PD content...
> ...
> But, to try to post an actual on-topic message ...
>
> There has been a lot of talk about Sinemet over the last cou-
> ple of days. Now, I know that everybody is different and every-
> body reacts differently to their medications. But, I am kind of
> curious why I am *so* different? ... or, at least it seems that
> way to me.
>
> I am currently 46 and I was diagnosed four years ago. My
> first neuro. put me on Sinemet 25/100 at two tablets a day. I
> noticed no change in my symptoms. My second neuro. put me on the
> same 25/100 at the same dosage of two tablets a day. Again, I
> noticed no change in my symptoms. This doctor bumped me up to
> four tablets a day, but there were still no changes in my symp-
> toms. My third neuro. changed the prescription to Sinemet CR
> 50/200 at two tablets a day, but (again) there was no noticeable
> change in any of my symptoms.
>
> My current neuro. put me on three tablets of Sinemet 25/250
> per day. And, this was the first time that I had noticed any
> change at all. Some of the symptoms were actually reduced and it
> was noticeable. But, also noticeable, was a major dyskinesia in
> the form of my head bobbing a lot when I was talking. This neu-
> ro. then "bumped me down" to CR 50/200 at *four tablets a day* --
> and we're talking about maybe pushing that up to five a day if I
> can find a way to wake myself at two in the morning.
>
> What confuses me is that many people that have been discussing
> the effectiveness and dosage of Sinemet here in this forum for
> the last couple of days have said that they are taking the non-CR
> 25/100 -- and have been for many years -- and it does, in fact,
> relieve their symptoms.
>
> Now remember, I'm a paranoid introvert so I almost can't help
> from asking "why am I *so* different?" Without being too face-
> tious, funny, or silly, does anybody have any thoughts on this
> subject? Thoughts, ideas, concepts, criticisms, witticisms, far-
> eastern philosophies, ... anything?
>
> Call me curious today. Curious if an on-topic post from me
> will draw any responses. And, as we say in Grand Funk land, keep
> Shinin' On ...
> ...

        Then ...

> Date: Wed, 26 Apr 2000 19:51:07 -0400 (EDT)
> From: "William A. Parrette" <[log in to unmask]>
> To: Parkinson's Information Exchange Network <[log in to unmask]>
> Subject: Re: Six of one ...PD content / back to the knitting ..
>
> Hi all,
>
> On Wed, 26 Apr 2000, the digest contained:
>
> > Date: Wed, 26 Apr 2000 09:40:40 -0400
> > From: janet paterson <[log in to unmask]>
> > Subject: Re: Six of one ...PD content / back to the knitting ...
>
> > ...
> > prepare for the jaNET INTERrogation! ...
>
> I'm ready, ma'am. But, could I ask you to turn on some
> lights, untie me from this chair, take off the mask, and put away
> the rubber hose? Please?
>
> > ...
> > what were/are your symptoms?
> > pre-diagnosis? ...
>
> Ever since I can remember, I have had tremors in my hands.
> Nothing major, but enough to keep me from doing any kind of "de-
> tail" work with my hands. Initially, my *symptom* was what I
> would have called a twitch in my right arm. And, my "normal"
> shaking had become more noticeable.
>
> About a month or two after I noticed these symptoms, it had
> become bad enough to make me seek medical advice. In addition to
> the twitch, the neurologist noticed that -- as I walked -- my
> right arm didn't swing as freely as my left.
>
> > ...
> > what were/are your symptoms?
> > post-diagnosis? ...
>
> In the last four years, I have had a variety of symptoms. At
> times, I would notice that I would unconsciously clench my hands
> tightly. I also developed an ache in my shoulder, elbow, or fin-
> gers of my right arm. A little later, I noticed that the muscles
> in the right side of my body would tense up. And, on occasion,
> my vision would blur slightly or I would require brighter light
> to read smaller text.
>
> These symptoms didn't always build on one another. Sometimes
> one symptom would fade while another became more prominent.
> There was no pattern -- no rhyme or reason I could detect. But,
> when recovering from an illness of any kind, the tremors seemed
> to worsen. And, in general, the symptoms seem to be at their
> worst in the morning but diminish a bit through the day into the
> evening.
>
> I have gone through a range of styles of tremors. What started
> out as a general shaking of the hands eventually changed into the
> classic "pill rolling" tremor. Then, it changed to a clasp-
> ing/grasping tremor. Either one was controllable at rest. And,
> the non-swinging arm stopped for a while and then changed into a
> raised-arm/clenching fist position on both sides.
>
> Eventually, I started noticing the "slowness of movement."
> Walking became harder and it would take quite a bit of effort to
> do simple things like walking the dog. And, getting into and out
> of cars and chairs became a real effort as well. I would have to
> expend a great deal of effort using my arms to pull me out and up
> into a standing position.
>
> > ...
> > what were/are your symptoms?
> > 4 years post-diagnosis? ...
>
> At the moment, on the 4 x 50/200 CR, the symptom that is still
> noticeable is the tremors. I have noticeable tremors in both
> arms and both legs. As I remember, the off-Sinemet tremors were
> much worse than the current on-Sinemet tremors. And, except for
> the Sinemet-induced dyskinesia, these are the only symptoms I now
> notice.
>
> > ...
> > in what way were they reduced by the 3x25/250IR sinemet doseage? ...
>
> The first thing I can say is that I generally felt better.
> People who knew me and saw me regularly said I looked better.
> The only symptom that I noticed -- as described above -- was the
> arm/leg tremors and the dyskinesia.
>
> > ...
> > in what way were they affected by the 4x50/200CR sinemet doseage? ...
>
> The tremors worsened slightly -- almost imperceptibly. But,
> in the year or more since I've been on this prescription, the
> tremors have gradually worsened again to be, IMO, more noticeable
> and getting harder to hide.
>
> FWIW, if I can sit, undisturbed, and get my body in a relaxed,
> meditative state, many times I can get the tremors to stop. But,
> the instant I move -- sometimes when I think about moving -- they
> will start up again.
>
> One other thing, I do have on-times and off-times. There are
> periods during the day when the tremors will all but disappear.
> While at other times they appear somewhat strong. I have not
> been able to determine a schedule or cause/effect or any type of
> pattern at all in these on/off times.
>
> > ...
> > why does your neuro think a fifth 50/200CR
> > would benefit you at the cost of interrupting sleep? ...
>
> *Our* opinion is :-) that in the period of time between my
> last dose at 6 P.M. and my first dose in the morning at 6 A.M.
> that all of the Levodopa has been consumed or used. So, it takes
> a long time in the morning to get the first (and maybe the sec-
> ond) to kick in and provide some relief.
>
> So the theory is that the 2 A. M. dose might provide a sort of
> "running start" for the 6 A.M. dose to make it more effective.
>
> And, this is actually more my idea. But, the neuro. said it
> wouldn't hurt to try it and see what happens.
>
> > ...
> > why you are on your fourth neuro? ...
>
> With the first doctor, I had no insurance and the symptoms
> were in their very early stage. The second doctor chose to have
> some elective surgery soon after I became a patient and was un-
> available for approximately six months. The third doctor (excuse
> the use of "language") pissed me off. Now, I am on my fourth
> neurologist.
>
> So, Ms. "Kinsey," :-) may I take my had out of the Gom Jabar
> now? ;-)

Bill--
  ...who thinks it is unnerving that a doctor calls what he does "a practice."
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