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   2. You probably don't need a dose at bedtime.


Nilo and Dave...FWIW..I think "probably" is the magic word.....you might
want to consider what my neurologist told me at my last visit..... I didn't take
anything at bedtime for quite awhile  until just recently...  when my
neuro had me add a dose at bedtime stating she "didn't want the blood syrum
level" to drop so much overnight..and it has made a difference in how I feel
getting up in the morning....as Dave said "You will soon know if it
works.."   Joan Hartman



----- Original Message -----

From: dpurdy


To: [log in to unmask]

Sent: 3/5/01 3:55:51 PM

Subject: Re: Diary of New Parkinson's
Patient





Nilo,

I have several suggestions: 1. Don't worry about the B6. The carbidopa in
the

Sinemet will take care of it unless it is an extremely large amount. 2.
You

probably don't need a dose at bedtime. 3. I would suggest one tablet when
you

first get up in the morning, the one about a half hour before lunch, and
the third

one about a half hour before dinner. You will soon know if it works.
Believe me,

you will know. The diary is an excellent idea. I've recommended it to many,
Make

sure you show it to your doctor. It will help. I wish you the best of
health.

Dave Purdy



Nilo Sarmiento wrote:



  To all contributors to the listserv, thank you for the valuable

  service/support you have provided.



  On Tuesday, Feb. 27, 2001, I was "formally diagnosed" as having
the

  symptons of PD. I say "formally," because I have had some symptoms for
some

  time, but whenever I saw my neurologist, he was not sufficiently
convinced

  that the symptoms were those of PD.  Being 64 years old,
going on 65, he

  felt that the symptoms could be those of old age (as brain cells die
due to

  age, the resulting  deterioration shows itself in
the  symptoms that could

  be associated with Parkinson's).



  Finally, my wife came with me, and told my doctor all her observations
(she

  has done a lot of reading on PD, much more than I have!!).



  To make a long story short, the doctor prescribed sinemet the
25/100

  combination. His only directions were: take one tablet before a meal,
three

  times a day.   This was not the first time I had taken a
prescription with

  such general directions.  And it was not until I began to
actually follow

  those directions that I found them to be too general.  If
there would be so

  many variations in the times of my meals, how could I
measure  the duration

  of their effect.



   From the literature that came with them. I learned
that:

  1. Sinemet works best when taken on an empty stomach;

  2. Vitamin B6 interferes with the effectiveness of levodopa, when
taken

  alone, but not when taken with carbidopa; and that some food have a
good

  measure of B6 (bananas, egg yolk, meat, peanuts were specifically
mentioned.)



  Re "three times daily before a meal,"  absent any
prohibition to the

  contrary, and in light of the specific note that sinemet works best
when

  taken on an empty stomach, I decided to divide the 24 hours into 3
segments

  of  8 hours each , and I figured that at least for now, 7
am, 3 pm, and 11

  pm were my pill time.



  Re food, I am a banana nut and a peanuts nut... but I decided to
give

  sinimet (and me!) the benefit of the doubt,and give it every chance
to

  work: From here on, no bananas and peanuts, even though they might be
OK,

  because of carbidopa. No multi-vitamin which has much as 300% DR of
B6.

  This is part of my effort to eliminate any element considered a
potential

  levodopa interferent.



  I decided to start a diary, in an Excel spreadsheet format; and I am
doing

  all this as part of my own research. The reason for the 3 segments of
8

  hours, is to find out how long the effect of each pill lasts, or if it
even

  has any effect, positive or negative on any of the symptoms. I do
not

  expect to see any noticeable improvement until at least a month on
this

  regimen.   But the only way to determine improvement is for
me to make some

  detailed observations.



  As for my attitude, I have fully accepted the fact that I could have
PD,

  and that I will need to work around it. As the Roman poet Horace would
say:

  Fit patientia quicquid est corrigere nefas

  This is echoed by the Serenity Prayer, which I am sure most of us know
by

  heart:

  God grant me:

  Serenity to accept the things I cannot change;

  Courage to change the things that I can; and

  Wisdom to know the difference.



  Here then are the hi-hlights of the first few days..



  February 27. Tuesday, I took the first pill just before lunch, and
the

  second just before dinner around 7 pm.



  February 28,  Wednesday, I had my first pill around 6:30
am,  and realized

  that I did not have a pill for almost 12 hours.  I was not
satisfied with

  that imprecision and disparity in the length  of time
between the

  pills.  That's when I decided to divide the 24
hours  into 3 segments, each

  8 hours long, and the times.



  March 1, Thursday, second day, took  the pills within two
minutes before or

  after my pill-time, and I wait for around half an hour before I take
any

  food...to give the pill the chance to dissolve and be absorbed into my
system.



  It is too soon to say, but I have not felt this good in the past month
or

  so; so far, I have had none of the side effects, except what could be
a

  "false sense of wellbeing" like what I just said. My urine is still
"clear"

  or not as discolored as I had anticipated.



  Note to members of listserv..



  I do not know if any of you are keeping a similar diary; how are
you

  keeping it , and if it has served your
purpose.    I had thought of keeping

  such diary, just for my own use; when I finally got diagnosed, I
wanted to

  find out in what way i could make a contribution to the group. It
occurred

  to me that sharing the highlights with all of you might help.



  And so, before I continue to share my own findings, on a day to day
basis,

  I would appreciate any feedback, from you.  If, for
instance, you want to

  know what I mean by my keeping a diary in Excel format, let me know,
and I

  shall attach a copy by next installment.



  Thanks.



  Nilo







--- Joan Hartman

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