I found that I had Parkinson
5/24/1995 two weeks after retiring...
>
> four years ago
> and
i assume you had symptoms for some time before diagnosis?
> how old are
you now?
I had a left knee replaced and had
gone to the Dr. on my final visit. He noticed my feft hand had a
slight trimer and my right thum had a slight shake. He asked me how long I
had that, i told him about a month. Latter a Medic that worked in First Aid told
me he had noticed it about a year befor but he said nothing at that time, I had
gone in to get my eyes cleaned.
I am now 65
I have been on Sinemet CR from day 1. I have
Sinemet CR 50/200.
> >Sinemet CR. 25/100. Sinemet 25/100. Sinemet
10/100
> >The 5:50 pm Sinemet, if I feel like my body is running out I
take
> >the reg. other wise I take the CR.
> >My medication
schedule was set by my Near, I am on my third one and
> >every one was
different...
>
> do you mean that each neuro's approach or advice
was different?
> have you been to a movement disorder specialist?
>
or at least a neuro who specializes in pd?
Each neuro's advice was different.
No I have not been to a movement disoder specialist or a nuero who specializes
in pd.
where do you live?
>
> >I was
told to fine tune it, and every time I cut it that
changed
things...
>
> what exactly was meant by 'fine
tuning'?
> did you take it to mean reducing your overall med
intake?
I live in Bedford Indiana
I took it to mean Reducimg my over all med
intake to a point where it still worked for me.
what workes for me may not work for
you.
where do you live?
>
> >I was
told to fine tune it, and every time I cut it that
changed
things...
>
> what exactly was meant by 'fine
tuning'?
> did you take it to mean reducing your overall med
intake?
where do you live?
>
>
>I was told to fine tune it, and every time I cut it that
changed
things...
>
> what exactly was meant by 'fine
tuning'?
> did you take it to mean reducing your overall med
intake?
How does it fit with my meals? It
don't
> >I usually eat one meal I day at the senior Citizens
Club.
> >I know what I eat makes a difference, I didn't know when made
a
> >difference...
>
> what time of day do you have that
meal?
> 'when' is certainly a concern, as time marches on,
> since a
lot of us find that a large [meaning normal sized] meal
> taken prior to
meds can render the subsequent meds virtually useless
I eat at 11:15
am , I did eat breakfast cerial or oats. then I read not to take
Sinemet with dairy products. so I quit, now I have juice and
coffee and have dropped 20 pounds, down
to 112 lbs
my friends want to know what my problem
is.
>I checked my notes and this has been going
on for at least 2 weeks...
>
> what kind of notes have you been
keeping?
> and what exactly do you mean by 'this has been going
on...'?
> do you mean the evening 'drop off' of your med
'coverage'?
>
> has something changed in the past two to three
weeks?
> i.e. your med intake, your diet, any supplements you might
take,
> any other changes to your daily regimen, lifestyle, stress,
etc.?
>
I have to write down what and when I take my
medication.
this going on I mean when the
Sinemet quits. I do not know
why.
My neuro had me on Sinemet CR 25/100 5
times a day. then went to 1 Sinemet CR 50/200 at 7:00 am and 1:30 pm and
Sinemet Cr 25/100 at 11:00 am. Eldepryl 5 mg at 7;00 am and at noon
I asked if I could try cutting back on the
Sinemet. I got the OK. Over a peroid of 3 or 4 weeks I had it down to taking 1/2
Sinemet Cr 25/100 5 times a day.
things were fine. then I started to run out of
med in my body at around 8:00 or 9:00 pm rather than take more.I just done with
out
When my mediation is working I don't know I have
Parkinson...
>
> perfect!
> this is the way things should
be
> particularly at your 'medium-rare' stage [!]
>
> >I
have not tried a daily analysis did not know there was one.
> >I will
try to find it...
>
> brian collins has put together a med
effectiveness analysis scheme
> maybe he will comment on it
>it's
available through the 'james' website
> where the list archives in the
u.k. are kept
> [see my website below and follow the links to
pienet/words]
>
> when last did you see your latest neuro?
>
have you discussed these recent changes with her/him?
I see him about every 3
month's. next appoinment is Aug 13 th
> as a former 'medium rare timer' now edging
toward plain 'medium'
> [as opposed to 'old timer', at least in pd
terms]
> i think you might be progressing to the point where
>
pro-active management of your meds becomes
> more
important
>
> any other opinions from other 'medium
timers'?
janet
>
> janet paterson
> 52 now / 41 dx / 37
onset
> snail-mail: PO Box 171 Almonte Ontario K0A
1A0 Canada
> website: a new voice <http://www.geocities.com/SoHo/Village/6263/>
>
e-mail: <[log in to unmask]>
>
>