Thanks barb from calfornia, for the post.  I don't know if it makes me feel
better to know the extent of what can happen to someone who is important to
me, as a man and a pwp, or not to know believing in some magic wand wielded
by a doctor.  Maybe some of you are more equipped to decide which is better
than I feel I am at this moment.

audrey * seattle*

----- Original Message -----
From: Barb_MSN <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, February 08, 2000 12:56 PM
Subject: Low Dose Dopa


> Dear List Family...
>
> The following is a commentary authored by PWP Tony Schoonenberg.
> Tony is an assistant to neurosurgeon Dr. Robert Iacono.
>
> With Tony's permission to share his thoughts on the List, I am
> acting as a conduit (tho I DO have an opinion on
> under/over-medicating), so please, should you want to correspond
> with TONY about his commentary, his personal email address is::
>
> [log in to unmask]
>
> Barb Mallut
> [log in to unmask]
>
>
> One Parkies opinion on low dose drug treatments
>
>  I just read the latest in the continuing saga of the war against
> Parkinson's patients, that's right not Parkinson's disease.  Be
> sacrificed at the alter of neuroscience.  This is in response to
> the recently published article by " J Neurology Neurosurgery
> Psychiatry 1999 Sep; 67 (3): 300-7".  The premise of this paper
> has to do with the fact that we are told by the neurology
> community that Sinemet is toxic and should be limited.  Everyday
> as patient advocate I see the suffering resulting from this
> fallacy, but this flawed opinion persists .  Patient after patient
> is wheeled through our door akinetic and frozen in their wheel
> chair, because of not enough medication I can't count the amount
> of parkies we have sent home doing well on large doses of dopa and
> dopaminergic agonists.  Then six months later the family Doctor or
> Neurologist tells he/she that the amount of drugs they are taking
> is an overdose.  Therefore they cut back on their medication at
> home, become akinetic, and fall, break a hip or choke on their
> food, or aspirate in the middle of the night, get pneumonia and go
> to the hospital.  When they end up in the hospital because of lack
> of sleep, stress, fever etc. they become confused.  When this
> occurs the disease establishment takes over, either the Parkinson'
> s medication are cut further or stopped.  The patients become
> confused and immobile.  The well-meaning and over-worked nursing
> staff sees the anguish and stress in their patient.  The nurse
> calls the Doctor asking for sedation.  The Doctor orders Benzos or
> worse narcoleptics .  The parkie who was doing fine when sent home
> on large doses of L-Dopa and other drugs, slowly and
> painfully aspirates in an akinetic state and dies.  When the
> disease establishment learns that the goal of drug therapy in
> Parkinson's is not to make the patient barely functional on the
> lowest dose of drug or as few drugs possible.  The goal of
> treatment should be to make the Parkinson's patient as normal as
> possible no
> matter how many drugs are needed, then deal with the side effects
> as they come along.  The most important thing is keeping the
> patient as normal as possible as long as possible.  I can't
> believe that the low dose regimen reported in this article which
> resulted in only a nine year average survival was ethical
> research.  Tony Schoonenberg, 01-07-2000
>