Subject:  Dorothy's Story

Hello Laurie,  Thanks for your letter.

First, I will try to deal with the point raised regarding possible weirdos who
join in for some obscure reason. I must admit that the thought had not ocurred
to me before, and now that I do think about, it is very difficult to see how a
fool-proof system could be set up, without wrapping the whole thing in miles
of red tape, which nobody wants. Perhaps one way would be that if you read
these pages for a while, you will see certain names popping up  regularly, and
it is easy to see that they are are the heart of this group (Including of
course, the dear lady who started it all, Barbara Patterson. If you have a
concern about a particular person, perhaps they are the ones to turn to. Mind
you, having seen them in action, I don't think very much gets past them!
  And what about me? I have only been a member of this list since about june,
and I suppose I do come over a bit bossy sometimes. All I can say is as in
the previous paragraph; consult the old hands.  In the end, you have got to
trust someone. My credentials, incidentally, are 17 years since PD was
diagnosed ( 23 yrs since first symptoms) 15 years on Sinemet, and still taking
it.  Regarding the Professionals, there are neurologists for whom I have the
greatest respect, and others for whom I have rather less respect. After all
they are only people! They can be wrong sometimes. I confess to getting very
irritated by patients who regard the specialists as God, and wouldn't dream
of questioning any of their pronouncements. As for Doctors (General
Practitioners as we call them); I believe thatit is the duty of all GPs ,
when faced with a possible PWP, to immediately refer that person to a
Specialist. Nobody expects a GP to be fully conversant with the subtleties of
PD, when you consider that the average GP will have only 3 PWPs on his books at
any time.

OK, let's get back to Dorothy:
   The first thing to say about Eldepryl is that I don't thimk anyone would
expect it to cure or even affect in any substantial way the Tremor of PD,
especially after 5 years. Eldepryl, (or Deprenyl, or Selegeline - all names
for the same thing) used to be given to all newly-diagnosed PWPs, because
someone put 2 and 2 together and came up with a theory that we may all get PD
by accidental exposure to an MPTP type of toxin. MPTP is a designer drug gone
wrong. Do you remember the LA junkies who had their Dopamine- producing cells
Wiped Out by MPTP. Clearly that is one way to get PD, but how many travel that
route? Very few I suspect. Anyway Eldepryl in the brain would attack the MPTP
if it ever showed up, thus protecting us. Very few neurologists now believe
the MPTP theory, and folowing a recent scare about increased mortality rate
of people taking levodopa and eldepryl, there has been quite a large movemwnt
away from eldepryl. Incidentally, Eldepryl does help to slow down the rate
of degeneration of Dopamine in the brain, and in that way could provide a
small improvement in symptoms.  Eldepryl also produces Amphetamine in the
course of its breakdown in the brain Whooopeee - no wonder you get vivid
dreams if you take it near to bedtime!
  To sum up on Eldepryl: IK don't think it does much good, but it doesn't do
much harm either.  Personally I gave it up about a year ago.

Sinemet: Putting Dorothy on Sinemet CR was not an unusual thing to do, as far
as dosage levels go, and was much better than some first time prescriptions
that I have seen. The neurologist could not be expected to know that she
would have such a violent reaction to it.  I am aware that some people can
feel nauseous when they start on Sinemet, but Dorothy's was really severe.
In the general case, careful introduction over a period of 2 weeks or so,
starting with VERY small doses, and gradually increasing up to the
recommended dose would be expected to overcome the nausea. I would suggest
that you try Dorothy on that, starting with small fractions of a  tablet.
NOTE Do NOT use the Sinemet CRs for this job, use the straight Sinemet tablet
which contains  100 mg levodopa, 25 mg Carbidopa .

One other thought  occurs to me: I don't know if Madopar brand tablets are
available where you live. In the UK they are made by Roche Products. They
Use a different compound - Benserazide- instead of Carbidopa - to mix with the
levodopa. This might cause less nausea. - It is worth a try. In all functional
aspects, madopar is interchangeable with Sinemet.

To get the maximum effect from the Sinemet, take it 20 plus minutes before a
meal  To get minimum effect, if you are sufferring nausea, take the tablet
immediately following a meal.

I suspect the CR15 tablet which you have is actually a CR125 which would
give about the lowest dosage from the available tablets, But as I said above,
in Dorothy's case she should  start even lower with  chopped-up tablets.

DO NOT be persuaded to disolve the tablets in orange juice: That mixture
really zaps into your bloodstream quickly, and that is the last thing you want
at present.
  I do hope that Dorothy can come to tolerate Sinemet or Madopar. Without it,the outlook  is not encouraging .

Best wishes,  Brian Collins