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
[log in to unmask]View
the Parkinson's Awareness Links at:
http://www.geocities.com/janet313/pienet/wwweb/index.html