 |
 |
Brian, I totally agree with your conclusions. I've been on sinemet 12 years. No side effects. Had terrible side effects with Eldepryl. Greg 47/35/35 -----Original Message----- From: Brian Collins <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Friday, November 12, 1999 10:18 PM Subject: Re: FWD: To Sinemet or not!! [from Mary Sanford] >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]> >