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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 >