On Fri 12 Nov, janet paterson wrote:
> >From: [log in to unmask] (M E SANFORD)
> >Date: Thu, 11 Nov 1999 09:37:11 -0500 (EST)
> >Subject: To Sinemet or not!!
> >
> >Hi Janet just have to pput my 2 cents worth in this one
> >
> >At Diagnosis in Dec 1994 Neuro put me on Eldepryl. one year later in
> >Nov I went to Johns Hopkins for 2nd opinion.
********
> >In meantime I had researched on Web & at llirary & liked what I read
> >about new theory of delayiing Sinemet IF ANOTHER LESSER DRUG WORKED ====
*******>
>Also I had started personal training at local health club = specialist
> >at J Hopkins recommnded STRONGLY that I start on Sinemet & quit
> >Eldepryl but I refused !!
> >Next visit to my Neuro & he agreed with Specialist BUT I figured It
> >ain't broke so don't fix it. I was doing fine w/ just the Eldepryl.
> >Exercise program worked for me & my Golf game was just fine. BUT this
> >is my personal individual situation.
> >In 1997 added Amantadine & in 1998
> >added Permax. For me this works just fine. It will be 5 yrs on Dec
> >4th and I still am fortunate to be (early stage) and still haven't had
> >to take Sinemet (which is there for the future) if & when I need it==
> >I thank God for the slow progression. This condition is so
> >individualized that each person has to become knowledgable about their
> >own case. Thanks
> >
> >MARY E SANFORD
> >[log in to unmask]
> >Ocean City Md 21842
>
>
>
First; I had better apologise To Charlotte for upsetting he with my
comments on witholding levodopa. I was indulging myself in what I believe
is called a 'rant', and one does not necessarily set out to make a logical
case with a rant! Still,at least you replied to my mail, and you have never
done that before.
Mary: could you send me a copy or reference that I can use to see the
case for witholding levodopa (as you mentioned in the lines above *****
Mary mentioned perspective and it is indeed important to know a person's
background (medically speaking) before we pass judgment on what they say.
In the 21 years that I have had Parkinsons I have progressed to the point
that I have virtually no Dopamine-producing cells left ,and rely almost
entirely on tablets. I made a special study of levodopa, and was forced
to write a computer program to understand what was going on. I started
Sinemet after 1 year with PD, and have taken it ever since. I still take
800 mg/day, aided by Permax to avoid dyskinesias.I started on Permax
only when I had squeezed the last drops of juice out of levodopa alone,
because I had and still have a healthy respect and fear of the
unpleasant and unpredictable side effects which can result from using
Dopamine agonists. Indeed, when put beside levodopa, the agonists are
downright scary, as many members of this list will confirm. Levodopa
does not have side effects...... I can hear the howls of outrage already..,
but it is true : When treated by the brain, and turned into dopamine, that
is what it is: just dopamine, indistinguishable from the brain's dopamine.
If you don't take enough, nthing happens. If you take too much, you get
dyskinesias, and that's that. It is perfectly understandable, and
predictable.
A thought just ocurred to me: What is the cost of witholding levodopa in
the early years? (I don't know myself because in the UK we are not told
the costs .)
And finally: Did you hear about the man who decided to practice the
witholding of levodopa for as long as he could stand it. He really
believed in it, because his neurologist said it was good, and that was
good enough for him. So, he struggled on , switching from starter drugs
like Amantadine, Artane, Bromocryptine, titrating up and down on each
change, until finally his neurologist called him and asked him to go to
the hospital to learn how to switch to levodopa. He was tremendously
excited - all the suffering would be worthwhile..
On the way to the hospital, his retricted movement (caused by his swollen
ankles) resulted in a collision with a car driven by a Parkie on Re-quip,
who had fallen asleep at the wheel!!
Regards,
--
Brian Collins <[log in to unmask]>
