Re: 2 questions

["Charles T. Meyer" <cmeyer@xxxxxxxxxxxxxxx>]

Kathie-

I agree there is no easy answer and I think you state the dilemma well.
I don't have an easy answer but I think it is important that we discuss
the issues and try to understand the point of view of the "other side"
i.e. social security adjudicators.  Your example of tardive dyskinesia
and  long term neuroleptic use goes to the heart of the matter.  Should
society force an individual to take any medication they don't want to
take especially if it can cause something as bad as tardive dyskinesia.
And then on the other side should it support an individual who chooses
through his lack of treatment to be psychotic-  and then can he even
make a rational choice.

Charlie

Kathie Tollifson wrote:
>
> I thought I'd throw in 3 or 4 cents to this discussion, especially
> with my
> new extra-sensitive outlook toward sinemet. Recent experience has led
> me to
> an ultra-conservative approach to mainstream anti-parkinsonian meds.
> We all
> know sinemet is no cure, I know that it allows me to do things that I
> wouldn't be able to do without it, such as work, walk the mall, etc.
> It is a
> two-edged sword though, because it also masks an underlying fatigue
> that is
> numbing my mind and memory, and what else?  I think the bone-crushing
> fatigue, which is the state of my REAL health would dictate that I get
> a lot
> more rest than I do, but the sinemet gives me artificial energy plus
> keeps
> me awake at night, so I end up on a treadmill leading to a chronic
> state of
> fatigue. Not conducive to health.
>
> Also, there's that charming prospect of hallucinations and delusions
> that we
> are all risking when we use sinemet. After the last three weeks with
> Ron, I
> will do ANYTHING to avoid that fate, including stop using sinemet.
> Thank God
> the Mirapex is filling in for me, and I am day by day eliminating
> sinemet
> from my drug list, fervently hoping that I will be able to eliminate
> it
> totally. So far, since Janet's post and some others advice I have cut
> back
> by half, and  am feeling MUCH better.
>
> I don't see how we can criticize anyone for saying NO to sinemet,
> considering the long term potential risks. Especially a 45 year old
> man with
> 40 years of PD to look forward to. How would you like to be on sinemet
> for
> 40 years? Not me, I am in his same boat, and it scares me to death.
> The only
> way I can rationalize the use of any sinemet is by convincing myself
> that
> soon something  (like a cure) will come along and rescue me from the
> outcome
> of my choice to use it.
>
> And Charlie, I understand your point about refusing proven treatment
> being
> foolish, but I have a friend who now has tardive diskynesia from years
> of
> anti-psychotics. She didn't have a choice because her ability to
> function is
> so low, but she is paying a high price for following the established
> treatment mode.
>
> A question with no easy answers...
>
> Kathie Tollifson
> pyonyr@xxxxxxxxxxxxx
> 47/9

--

CHARLES T. MEYER, M.D.
Middleton, WI
cmeyer@xxxxxxxxxxxxxxx