 |
 |
Audrey,Don't get all down. I see it like this,I'm smarter now than I was 5 min. ago.I'm sure glad I'm one of those pushy ole broads. Every new Dr. I go to I let them know up front that I INTEND TO HAVE A SAY IN MY HEALTH CARE. Some one once asked me to define this statement(doctors practice). Try it,see what you come up with. Shirley -----Original Message----- From: Audrey <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Tuesday, February 08, 2000 2:36 PM Subject: Re: Low Dose Dopa >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 >>