RLS, Godfather, and others-

I have a plan in its early stages. I intend to build a website with the intention of drawing together PD researchers within the following guidelines;
1- It would be organized as a collection of forums much like this one (NeuroTalk).
2- Membership would be limited to those who met criteria established by the administration. While the public could read the threads, only members could post.
3- Members would be either degreed researchers or lay researchers vetted by admin, with a special effort to attract PWP within those groups.
4- The effort would be cross-disciplinary- a pathologist with PD might well be more valuable than a neurologist, for example.
5- Members would be anonymous in the interest of free and open discussion.
6- The emphasis would be on breaking into new territories that traditional researchers avoid for various reasons.
7- The Net and its access to the great database of knowledge will provide the feedstock for the research. We are the first generation to have such a tool.
8- An emphasis upon the practical will be the order of the day. Things that a patient can benefit from immediately will always be preferred over things that "warrant further research."
9- Recognizing both the risks involved and the limited time frame we work under, a deviation from the usual lengthy process of research trials will be devised built upon minimizing risk while maximizing benefit. Extensive bibliographic work to identify likely avenues, careful self-trials, a call for volunteers, and publication for further consideration is one model.

I would like comment on this.

reverett--could we begin with a national--or better yet--an international registry for PD individuals????madelyn

There have been posts here on the search for drugs that could be neuroprotective for people with Parkinson's. It's possible that there maybe some drugs available now that can be used off-label to slow or stop the progression of PD. The drugs that I've come across are in the opioid receptor antagonist class and one of them is cough syrrup, Dextromethorphan, sold over the counter. Another is Naltrexone or low dose naltrexone which I have been taking for 28 months. My PD does not seem to be worse over that time but maybe that's because of the sinemet and not enough time has passed.
On the old forum, before it crashed and burned, there was a member, RLSmi, who said he was taking Simply Cough which has Dextromethorphan as it's active ingredient. I noticed that RLS has joined this forum. I saved his old post on the other site and re-posted below. Hope you don't mind RLS. I found it interesing and hopeful, if I lose my LDN source, I will probably be taking DM. If you see this post RLS, would like to know how you are doing and if you still see DM as a drug to stop PD progression.
I have also posted research by Dr. Hong of the NIH on DM. I also emailed him about LDN and he said it's worth taking.
http://www.fasebj.org/cgi/content/short/18/3/589
http://www.sciencedirect.com/science...d18222d98d329f
Regards, Ashley

RLSmi
Braintalk 04/12/06
Join Date: Sep 2004
Posts: 93
Default *Attempting neuroprotection with DM*
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The third link Ashleyk listed in her post describes research on neuroprotection in a mouse model of PD using the drug Dextromethorphan (DM). DM is in the same class of drugs as naltrexone, which also has neuroprotective effects in the same system. Because DM is availablae over the counter, I have been taking it instead of naltrexone daily for more than a year at a dose of 5 mg, along with sinemet, amantadine and high-dose CoQ10. I am four years into my PD Dx, and I may still be in the sinimet honeymoon period, but my wife and I both think that something is keeping my symptoms from progressing.

At WPC I spoke with Dr. Jau-Shyong Hong, the senior author of the article mentioned above, after a presentation he made there on the role of glial cell inflammation in PD. His research group in North Carolina has been working on the mechanism of action of these drugs and the natural hormone dynorphin in neuroprotection. He was very interested in my story and we have been in communication about this several times since then. He hinted that there may be trials using DM for PD neuroprotection either planned or going on in other countries.

DM is most commonly used in cough medicines that also contain other active ingredients, and Dr. Hong was emphatic in specifying that any attempts at using it for neuroprotection should be with a preparation in which DM alone was the active ingredient. The preparation I am currently using is called Simply Cough. It is manufactured by McNeil Laboratories, who also make Children's Tylenol. When I described this process on this thread several months ago, someone added the precaution that DM should not be taken by someone also taking a MAO inhibitor.

Although I do not recommend that others start using DM, it seemed appropriate to post this information on this neuroprotection thread.
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/ Last edited by RLSmi : 04-13-2006 at 01:28 AM.

Sorry, I meant to start this DM as a new thread.
Ashley

just wanted to say that i have comments, just don't have time right now - will comment tomorrow - burning question though is will non-scientist pwp, like me, for example, be allowed to post - i would love to see a forum in which pwp could engage with researchers.

what sort of dialog do you hope will flourish on this forum and to what end?

more tomorrow - very excited about the idea so far.

boann

Most researchers work for someone who pays them money to do their job and sign legal papers that they will not divulge to the public any proprietary knowledge of their research, or risk firing. A lot of published tidbits about drug questions can be found in.

http://www.biopsychiatry.com/index.html

Too many rules !

It restricts who can add, what they can add, and which sources they can use. I have had discussions with senior people in the medical establishment only to realise how little they knew. Yet, I have seen some really profound points made by patients or non-medicals.

Retaining anonymity ! I have used names such as Attila the Hun, Daffy Duck, and God Almighty, yet people knew who I was.

There is far more information available beyond the Internet. Using only the Internet eliminates most books, full details of most research, and all older abstracts.

In practice you can not emphasise certain approaches, and the practical over things that "warrant further research." Everything warrants further research.

Good idea, but bad rules. Here are my proposed rules :

Gosh, Keith, I wonder how anyone knew who you were??!!

I don't think that there are too many rules, actually. Most of Rick's "rules" are just points about the goals. I think the rules have pretty much been pared down to the minimum needed to be functional.

I disagree with opening up the threads to everyone - soon there would be a chaotic situation with all of the serious researchers being crowded off the forum. There does need to be a place for knowledgeable amateurs, though; perhaps separate threads that were linked at the base to the main thread. Perhaps even with the capabiity of crossing between the two at higher levels,or linked off to the side of a post.

Though I was tempted to chivvy GF a little myself regarding his problem with usernames ( I mean, really, who else is going to choose Attila the Hun? ), I restrained myself.

The ideal group members to my mind would be professionals who also had PD. There have to be a lot of us meeting that description. The others would be academics and PWP who had shown a determination to self-educate on the subject. Part of the reason for anonymnity is so that one would not necessarily know anything about the others and so would not dismiss the "patient". In fact, unless a member chose to reveal more, all you would know was that he had passed the same vetting you had and was, by definition, a "peer". It would be the role of the administration to maintain the quality of the intellectual environment by careful selection of members.

One could become a member several ways. By public invitation through advertising. By private invitation after recomendation by an existing member. By application to the admin. In each case one would have to convince admin that one could contribute to the effort. This would not be a "provide your email address and you are a member" type of affair. You really would have to convince the admin that you were worth the space on the hard drive. A PWP who never made it to college but who had spent the last three or four years studying the subject and had left a trail of postings to prove it would be a shoe-in. A "Phudd" who got his paper twenty years ago but who hasn't thought about the matter since would have a harder time.

There would be an intentional "snob" factor in it. Not everyone could get in but those that did would be the "best". For the academic, there would be a very real career advantage as well. What ideas might, for example, a neuroendocrinologist pick up from, say, an immunologist? Perhaps one that solved a problem that had been deviling him back at his lab for weeks? Or suppose you are about to commit two years and most of your department's budget on doing something naughty to Siberian chipmunks. Then you find that "Microbe3112" did the very same thing last year and half a world away and found it to be a complete waste of time?

So, yes, there are rules but with a purpose. Sort of a three dimensional Roberts' Rules of Order. It limits freedom in favor of effectiveness.

So, what do you think Daffy?

As long as cartoon ducks can be members, I'm all in favour of it