I spend a lot of time researching PD, to include reading all the PD forums and I find this thread very disheartening. I have no doubt that everyone on here is of good faith and have the other’s best interest at heart, but some have gone off the rails re how they treat those with whom they disagree.
The primary reason anyone reads health forums is to find out what other people are doing that works for them that is not evidence based, that the FDA has not approved, and is off label -- because the FDA has approved so precious little for PWP, we don’t need forums for that.
There is a small group who feel one should not do anything that isn’t evidence based and that one should only do what their doctor agrees with.
When I post comments on PD forums, I don’t use the word “should.” I don’t know what is best for others. I only post what I do and why.
By advocating for URDODIOL, MrFritz is not controlling anyone’s decisions, but if his detractors were to succeed in getting this thread blocked, they would be controlling other people’s decisions. When you control what one person writes, you control what another person reads and, therefore, what they think.
That all posts should be backed up by evidence, in my opinion, might needlessly allow one’s condition to worsen. Let me use as an example a drug that has not been discussed on this thread, why only evidenced bases therapies should be used is a disservice to PWP.
Isradipine is an old, not very good drug recognized by the FDA in 1990 as safe and effective for hypertension in. Isradipine is completing 3 years of phase III clinical trials in 57 locations in Canada and US to see if it slows the progression of PD. That means hundreds of PD neurologists, MDs, molecular biologists, and executives of universities, governments, and PD foundations have decided to spend tens of millions of dollars betting that Irasdipine will be recognized by the FDA as safe and effective in slowing Parkinson’s. Since the trial is not yet complete, it is not “evidence,” but its place in the process is good enough for me to take it now – because the FDA approval is many years away and the difference between slowing my progression now instead of 5 years from will change my life.
I learned about Isradipine on another PD forum. If some people were to succeed in locking or removing threads from forums, I would never have learned about this and therefore would have been deprived on making my own decisions as to what is best for me. I’m taking Isradipine, but I have hypertension. I would take even if I didn’t have hypertension. However, I don’t have an opinion as to whether others should take it or not take it. Others can do their own research, make and be responsible for their own decisions.
Another example of compounds that may be beneficial and may not ever be evidenced based to the degree drugs are, are supplements.
One of the other PD forums I monitor is an international forum where many of the leading participants are molecular biologists and other health care researchers and scientists, neurologists, and MDs, etc. They share research data, personal experiences and have in-depth discussions re meds and supplements.
Supplements are not subject to FDA approval and get a small fraction of the research as do manufactured drugs, but there is no question that some supplements benefit some people.
Some of the more common supplements discussed on PD forums are;
N-acetyl cysteine (NAC)
Grape Seed extract
Green Tea extract
B Vitamin Complex, C, D, and E
Milk Thistle extract
Probiotics Complex with Acidophilis
I’ve done research on these and I take some of them. I take all supplement content with a big helping of salt because a lot of the supplement content are websites selling supplements, there are no government regulations as to quality or purity and often few competent clinical trials. I do not have an opinion as to whether anyone else take or not take supplements.
To research these, Google, for example, “trans-resveratrol Parkinson’s forums.”
A Parkinson’s blogger I like is Frank Church. A medical school and undergraduate biology educator, biomedical science researcher and part-time golfer. “My diagnosis of Parkinson's disease, combined with my career in science and education, allows me the ultimate "teachable moment". Thus, the theme of this blog is my journey with Parkinson's.”
Contrary to my assertion that I don’t give advice, I have some, albeit non-medical.
If you have PD, and want to be less anxious, live longer, be healthier, and happier, quit watching so much TV, especially cable news, become a courteous driver, quit drinking, exercise a lot, especially vigorous bicycle pedaling, eat right (perhaps the Mediterranean diet) and volunteer to enrich the lives of those less fortunate.
My post here today is meant only as food for thought.
I wish you all the very best on your journey with Parkinson’s.