Hi All - old visitors to this forum and new - oh, and you, too, lurkers!
It has been a full day, and I should be heading for bed, but I have this driving force within me to open a discussion on my future - OUR future. That is what these forums really are for - to share our training and/or experiences here in hopes of changing OUR future.
I have been reading study results here and there that dopamine replacement may not be the best way to treat our disease
. I don't have "Stupid" written across my forehead, but I'm pretty sure that this has been known for a long time. Given the body of research, and more specifically the way Parkinson's has historically moved from initially treating newly diagnosed patients with dopamine replacement therapy to usually starting patients on an agonist is the preferred or best medical practice, the fact that we use dopamine replacement could be wrong - very wrong..
You see, science is . . . well, it's a science. Nothing is really proven by what research tells us because it is static - it keeps changing. And nothing is ever really unproven, like dopamine replacement therapy is the best way to treat PD. So what it appears that the medical profession as a body sort of follow each other around, sniffing out what each other is up to in treating various illnesses. They look for something that keeps us, the patients, quiet.
That's right; you read me correctly. The doctors treat us, and when we don't come back to their offices complaining about symptoms, it is assumed that however they have been treating us is working. And it's that way with ALL illnesses. So basically, we, the patients, have been quiet about our disease for 40+ years. Why? Because dopamine replacement works, and it still does.
I know of no drug that so vividly corrects or manages symptoms better or faster than dopamine replacement
(other than maybe ADHD or hyperactivity treatment). Let's call our drug L-dopa. I can go off, or have been without L-dopa for several hours (like when I wake up in the morning - if I have slept), and I am an invalid. My words are slurred, my ever-so-slight tremor increases, I cannot walk, hold a pencil, and I drool and hurt pretty much all over. Then I pop a Sinemet (L-dopa), and depending on what activity I have done (how much dopamine was depleted) or what is already in my digestive system to compete with the drug, I become a marvel right before your eyes! Suddenly, the pain subsides, I can write, draw, paint, and my speech is intelligible, however, over the years I tend to slur my words, but I am able to communicate.
SHA-ZAM! I am now able to live a fairly good life for many years, whereas 40 some years ago, after a diagnosis of Parkinson's, patients only survived 5-10 years, and many were institutionalized. So in one sense, dopamine replacement appears to be neuroprotective, since most PD patients live 15-20-30+ years when treated with L-dopa.
BUT - HOLD YER HORSES! Let's examine the history of Parkinson's therapy and compare the quality of life (QOL) of patients so treated. It's pretty much a helleva way to go! Go back and read the thread Paula wrote "My Way Out." Here's the link
My point in all of this rambling is this:
1. We are no closer to a better therapy (faster, better results) than dopamine replacement than we were at least 20-30 years ago.
2. Although we become asymptomatic (without symptoms) after administration of dopamine replacement, our overall quality of life (QOL) is far from even being considered "fair."
3. Have we been quiet about using dopamine replacement too long?
4. Are we in this Parkinson's thing for a quick fix, or for the long run?
5. Is it time to REALLY make some noise
about our preference - our demand for a better therapy!
PS - and although another therapy- deep brain stimulation (DBS) - is rapidly becoming the patient choice, I don't want brain surgery again (had it once in a clinical trial). We don't even have a test to show for certain that our problem is lack of dopamine.
G-nite - going to crawl to my bedroom for a night of insomnia.