I have been taking PD meds for 9 years (now age 49) for mainly stiffness. I
take my last night meds (sinemet and sinemet cr and Mirapex about 10pm. I am
a natural night owl, way before my illness. I am often up til 2am sometimes
later. I seem to have almost perfect flexibility, clarity of thought, and
creatively. I am a psychologist now working as a writer. I fee so good this
time of night I don't want to go to bed and lose the time...I get up about
6am to take meds and go back to bed so that I'll be flexible when I get up
about 7 am because of my work demands (although I am blessed to have a 10
second commute to my home office). I'm usualy very very rigid when I wake up
but can get up enough to take meds and sleep another hour.
I'm sleepy during the day some and take power naps which recharge me. In
recent years, energy has not been a problem.

I've figure out that my alert cycle is about 6 hours off my day/nights in
Texas. Guess I could straighten that out by moving to Hawaii!!!

How many of us were night owls before our illness?

I would love to chat with some of you late at night because there is
generally no one to call that late!

Beverly


-----Original Message-----
From: Murray Charters <[log in to unmask]>
Date: Friday, May 12, 2000 6:49 AM
Subject: Re: PD & 3am


On 12 May 2000, at 7:25, Ivan M Suzman wrote:

> PD has its own sleep rhythm
>
> My nights start with meds at 930 PM
> and again just past midnight.
>
> Mine include medications at 330 AM
> Sometimes again at 6AM, definitely by 7AM
>
> Otherwise I become immobilized.
>
> SO if I have rested enough, I get up at
> all kinds of pre-dawn hours.
> And sometimes I am most clear-headed and
> productive and write more easily on PIEN
> at that time of the day.
>
> My neuro just revealed to me  yesterday that
> I am the only patient who would be totally
> froxen up without nighttime meds.He has
> 60 PWP's in his practice of 200 or so patients.
>
> Maybe it's the tip of the iceberg; there
> must be MANY more PWP's like me.
>
> Murray do you need meds to  avoid nighttime paralysis?
>

Hi Ivan,
Rigidity is not a major symptom for me so for the most
part I don't take meds during the night and only seem to
*require* meds when I start my daily routine.

>
> What year are you in since diagnosis and onset?
>
> Ivan Suzman
> 50 age now / 39 diagnosis / 36 onset of visible symptoms
> :-)
>

Ivan, I had symptoms at age 38 and went through a year of tests
and the *diagnosis* was very indefinite ...  I was thought to be
possibly in early stages of MS.  While this proved false, I still
continued the therapy for loss of balance for several years off
and on... Other symptoms exhibited over time but they were
never dealt with as a package until age 49 when it became
obvious that I had Parkinson's.  My wife and I were taking
ballroom dance lessons and I was *diagnosed* by my wife
and my dance instructor. This was of course then taken to
my gp and on to a neuro for confirmation.  I'm now nearing my
56th. birthday.  I still work and don't have a lot of difficulty
aside from being slow and having a tremor.  I'm left handed
and my Parkinson's affects my right side.  I do suffer from
sleep deficit.

Regards ...... murray

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