I continue to perseverate about this topic, so my thoughts:
the discussion about dextromethorphan and its "unscientific" use by several members of this community reminds me of the story of amantadine and how it came to be used in PD. It was purely observational information from PD patients who were taking the drug for its flu-protection effects. these individuals reported the effects to their physician who reported the observation in one of the medical journals. Debate continues about amantadine's mechanism of action--is it a weak dopamine agonist , releasing dopamine from nerve endings thereby allowing more availability for dopamine receptor activity or is is an NMDA antagonist, counteracting increased excitatory glutamatergic activity, or does it affect the cholinergic system, or something else?


perhaps one of the members who is taking DM could persuade their physician to write an observational report for a journal and then it would appear to have the approval of the medical community, though in fact, would be an observational report from one physician.

I have found this community to be one in which there is sharing of information that is "scientific", "observational" and alternative. Some of us need the approval of physicians to undertake a therapy, others do not. I do agree that we are all responsible for researching a potential therapy prior to adopting it, but I for one welcome this kind of exchange. due to the overwhelming financial objectives for pharmaceutical research today, many potential therapies are lost.

One of the neurologists whom we consulted in 2005, related that many of her patients were reporting postivie effects from taking "Mobic", a non steroidal anti-inflammatory. Have not seen a research study utilizing this agent, and probably will not. She retired from practice before writing up the reported observations.....

taken to its extreme, any pharmaceutical therapy or surgical intervention for PD is "experimental" for any individual patient. acting upon shared observational information after researching the information oneself has obvious hazards, but witness the reports of problems with the dopamine agonists. you obviously hedge your bets when relying upon FDA approved drugs, but the risks remain.
I am in hopes others will not be discouraged from sharing their unscientific observations --perhaps one of us will stumble upon an "amantadine". In the meantime, whose signature includes the pronouncement--"go hard science"!! I agree, but I will attempt to help myself as much as possible as I rely upon hard "sanctioned" science.
madelyn

Hear! Hear!

As with so much of modern culture, things change faster in the research and medical communities than the individuals and institutions can adjust. Things are very different than they were just ten years ago but the Mainstream barely knows it and those who do don't know what to do other than tamp it down and keep the lid on. This is very unfortunate because many new opportunities have arisen and continue to do so.

It is human nature to work from the position of one's own self interest. Doctors and researchers are not saints and even the most well meaning has failings - in short, they are human. With the academic system structured to demand publication for personal security risk-taking is not rewarded. With medical practitioners held to superhuman legal standards the same is true.

Add in the defacto encouragement of a certain arrogance to complete the picture. The academic in his legendary "ivory tower" is an "authority" and subtly lets the rest of the world know it. The medical professional is trained to have a similar attitude. They both are defending yesterday's world where PWP were elderly, frail, isolated, and knew only what they were told. Journals and current research were almost impossible to obtain for most patients and even their doctors. It was "easy" for everyone to fall into their respective roles. But it was not to the benefit of the patient.

Two major changes occured while these groups slept. One was the advent of HIV and the resulting rise of the activist patient. The idea that the patient should have a voice in the direction of research and treatment was radical and still is. "Authority" does not like to be challenged.

The other change is, of course, the Internet and easy access to so much up-to-date information. Many of us literally stay more current than our doctors. And we are no longer isolated. New possibilities of collaborative research by patient groups are both promising for the future and a threat to the past way of doing things.

We are taking the first clumsy steps down a new path where patients and, some day, doctors and researchers talk as equals to their mutual benefit. We aren't there yet, but the day will come and everyone will wonder why it took so long.

I could not agree more with both of you.The biggest shock I had was when I found out how much more than my G.P (Primary Care Doc) I knew about P.D. I trained as an Educational Psychologist and the wisest thing I was told, which applies here, was said by my supervising Ed. Psych. This was:"If you come across a child with a rare condition ask the mother about it before you make a decision about help/placements etc as she will have made herself an expert on the condition."

EnglishCountryDancer, I could not agree more with you! Not just my GP either....

Just wanted to add though that over the counter cough medications have historically been the most abused of that type of medication, and that it concerns me that while we look for things that help (and I know that there are things out there that certainly assist my PD meds) that we don't overlook the downsides of some of them. I suppose I am saying be careful, and be aware!

Lindy x

Jeez, I've got a lot of catching up to do! I'm with Lindy here; I too have noticed the benefits of dextrometorphan in cough syrup and must admit that I seriously considered taking it at my own risk, but then I chickened out. Brain chemistry is too complicated. Michael J. Fox swears by his aspartame-loaded soft drinks, I do great on anything drenched in monosodium glutamate, and yet ... it's toxic, folks.

It is ironic, isn't it? Two excitotoxins, MSG and aspartame, known to have the same effect on us as putting rocket fuel in the old family wagon and, because we trust the white coats, we lose a brain cell with each sip. Our national spokesperson is bad enough, but, lordy, could I get in to a half-dozen egg rolls about now!!!

I have been acting as an informal liaison between research doctors and the patient community for several years. I can also read, and I, too, have spent "hours" scanning the interet and the clippings delivered to my mailbox every day. I'm sorry to say that your constant unfounded slamming of medical competence has even me intimidated sometimes. I fear you are hurting people with your blanket statements. The doctors I know are nothing like you describe. I don't know what went wrong for you, but it's not everyone's experience. I strongly suggest you go to www.parkinsonaction.org and listen to the webcast of the recent PAN forum, especially any material by Dr. (PhD) Storey Landis of NIH and Dr. Langston of the Parkinson's Institute. After that, come back and tell me whether they're uninformed or uncaring! Really, let your information speak for itself without having to eviscerate those with whom you differ, and if your view has value it will stand up to reason.

Jaye

says it all. during my working days I could tell you a few horror stories that would leave you in total despair.

yet I too had some of the same experiences but allowing for the few where I have found support and understanding I have to be truthfull and say there are good ones out there as well.

But how many does it take to be good or bad or right or wrong.

Depends on who you run into and there is where the risk llies.

all in the cards

Some of this has been said before on the old BT.

Some questions and a rant (some of this has been posted before)

It seems apparent that the medical research profession has produced little in the way of real protection against the onset or progression of Parkinson’s Disease.

"The guidelines, released in Neurology and at the AAN meeting, were quite explicit about agents of neuroprotection -- drugs that can prevent or turn back Parkinson’s Disease: There are none, the guidelines said."

OK, so they can’t defeat it or slow it down. In spite of that, it’s apparent from reading this board that a number of you have "pet" theories on protecting your selves against further progress of the disease. What are they? Do they work? Does your Neurologist know about them? Does she/he approve? How do you measure your theories’ success? Do you proceed from observations/anecdotes to hypothesis to hypothesis testing to theory? Have these data been published?

I also have "pet" theories. They are very modest and certainly unpublishable. I believe in exercise, a positive outlook, humor (I would rather be treated to a good laugh then to some ideas on curing Parkinson’s Disease), a healthy diet and, contrary to a number of posters, I also believe in the medical profession. It has come very far in the post World War II years. I remember, eons ago, when I was a little boy, doctors used to make home visits. Before his arrival (it was always a male back then), we laid out the things he would need; a clean towel (to dry his hands) and a clean teaspoon (to depress the patient’s tongue). Anything else he might need was in his black bag, which seemed very small. Think of the tools that the medical profession has today.

It seems to me that some efforts of the PD community have been misdirected. Take a lesson from the HIV community. It has been more successful than we in attracting research dollars in spite of the fact that our community is larger (in the U.S. 1.3 million versus 950,000 for AIDS). They have done so by advocacy, sometimes stridently so. Further, rather than making an enemy of the research community, they have become collaborators. Isn’t it time to stop referring to members of the medical profession as idiots and begin to see them and us as collaborators?

Lloyd

I'm not at all sure that that rebuke is justified. "Constant unfounded slamming of medical competence?" Constant? No, I often address other subjects. Unfounded? I will get to that in a moment. As for hurting people, I no more intend to do that than you do but we both walk a fine line there.

Let me make myself clear. We are talking about several groups. First, the doctors. As many have pointed out here, some of them are arrogant and have little time for listening to their patients. Others are great. I, for example, consider Abe Lieberman to be a veritable saint.

Second are the academics who make up the bulk of the research community. They often never see a PWP and don't particularly want to. They are focused on tenure and we are "academic" to a great number of them.

Third are the business interests, Big Pharma. They make money by treating us. They lose money by curing us. They answer to their stockholders.

As for unfounded cynicism:

Aspartame, MSG?- DR. Russell Blaylock has been in the trenches on that one for years. A little further work will show the way it gained approval.
http://aspartametruth.com/blaylock/

Big Pharma? Anybody from Texas?
http://www.corpwatch.org/article.php?id=14401
It seems that Merck has been caught paying to get laws that force a suspect vaccine on our kids. Plus they paid the FDA to fast track itsw approval over a six month period. The approval committee had two members who had left Merck's employee just month's before. Etc.

Medicine?
http://www.sciencedaily.com/upi/inde...ospitals-1.xml
"...we have a healthcare system in which an estimated 100,000 Americans die each year -- not from the medical conditions they checked in with, but from preventable medical errors, according to a report by the National Academy of Sciences' Institute of Medicine."

Please don't misunderstand me. If I'm bleeding I want the nearest hospital.

If not, then I want information to make the best choice I can. If my approach distresses anyone, my apologies.