HI there,
i understand that everyone is different. i understand that for many people, it is a choice between functioning and not functioning.
my point is that the sacrifices that people have to make in order to move are *too big,* and when you have a researcher 30 years ago on record as *saying* that these sacrifices are too big (not *just* disabling side effects, but *loss of benefit*) and a "new therapy" is needed, you have to wonder who it was that ever though such a drug was acceptable as a long term solution, never mind dubbing it "the gold standard," and you gotta wonder what has been going on in research for the last 30 years. let me see if i can come up with an analogy.
Let's say we live somewhere where there is bad water and worse water - just because bad water is better than worse water doesn't make it *acceptable* water and it certainly shouldn't be dubbed the "gold standard" of water - it is *still bad water.*
With Sinimet - i am only 41 - even if Sinimet works for me for 10 years, there i am at 51 in Sinimet h**l, on who knows how many drugs to try and manage its side effects, possibly facing brain surgery... and i don't care if it *is* the best we have, and i don't care if it *is* considered the gold standard by those who will never experience its joys, it *still* stinks and I don't know about anyone else but for me, it more than stinks, it is unacceptable.
If Parkinson's had had a patient advocate community like breast cancer does 30 years ago, we would have had better treatments long ago. Dopamine agonists are a step in the right direction, but apparently they generally delay the need for l-dopa only about 5 years and once one is on l-dopa the DOOFs stats are the same as they would have been had one skipped the agonist and gone straight to l-dopa. Fortunately, work is continuing into GDNF and gene therapy, and it appears that there might be a way to administer l-dopa that doesn't cause dyskinesias (though we *still* haven't got a study that shows definitively that l-dopa, which is unquestionably toxic to neurons in vitro, is not toxic in vivo (by the way, isn't that something that is supposed to be determined *before* it hits the market?)) so perhaps i will be super lucky and manage to skirt the whole sinimet quagmire.
but that doesn't make it ok, in my book, that the mantra "it's the best we have, it's the gold standard" has shushed PWP into accepting an unacceptable side effects for 30-40 years.
MyFirstname Mylastname <[log in to unmask]> wrote:
Everyone of us is different, yet we all face the same problems. PD
taking control of our bodies and there is little we can do to overcome
it. I have been on Simemet for almost l4 years. I am on Stalevo now
which is Sinemet and Comptan. I don't like it but without it I can't
move at all. Take whatever you need to function. That's my motto.
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