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Paul, Some really good points! If we don't go on and on, we'll never get any where with this new life style that we've been "blessed" with. I'm a bit tired on jumping the hurdles, but when I find something that helps, Wow, what satisfaction! Giving in would be too easy ........ but we have always been stubborn enough not to take the easy way out ..... so.... don't unwind...... keep the fire lit and we might just help turn the light on for another friend who is having trouble with a candle. Hope the Holidays were good to all and we wish you the very best in the New Year! Rob, Deb, and all of our furry kids ----- Original Message ----- From: "Paul Lauer" <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, December 27, 2001 5:47 AM Subject: Miscellaneous answers for new members > I have been asked by Emily and Michelle to expand upon a previous post. I > believe there are enough new members to do so on-list even though the > information is duplicative of that furnished previously. > So at the risk of boring some but with a view toward informing others, here > is the information which I have previously furnished to the list, culled from > the PIENET archives, an historical resource which all newcomers should learn > to use: > 1. Re: GM1 Ganglioside > <A HREF="http://parkinsn.coles.org.uk/Parkinsons/PARKINSNLog.nsf/c195194997949d 2880256733002fd35a/75661b20fd8d65a4802569bd0002a819?OpenDocument">Re: GM1 ganglioside study from Parkinson's Information Exchange Network < > [log in to unmask]></A> > > <A HREF="http://parkinsn.coles.org.uk/Parkinsons/PARKINSNLog.nsf/c195194997949d 2880256733002fd35a/7a8cff11bbbfb6f280256a8a00140b6a?OpenDocument">Re: GM1 Ganglioside study from Parkinson's Information Exchange Network < > [log in to unmask]> > </A> > Update since these posts: The edema mentioned in one of the posts persists > and I foolishly dropped out of the study 3 months ago thinking that the trial > medicine was causing the edema. It wasn't the cause (as it happens) and I'm > now reexamining my Requip as the culprit. That aside, I was told by the study > people that if I had applied now, I probably would not have been accepted > since my current disease status (aside from tremor) is not severe enough to > meet the acceptance criteria whereas it was at the time of my original > application leading to one of a few possibilities: > a. The drug was working > b. My regimen of vitamins and supplements, a combination of recommendations > by > my MDS (Dr. Stanley Fahn, Columbia Presbyterian, NYC), my Neuro (Dr. > Evangelos Xistris, Stamford, CT), and my own initiative, double checked with > one or the other above, is making a difference. This regimen includes 3000 > i.u. vitamin E, 3200 mg Vitamin C, Beta Carotene, Stresstab, Selenium 200 mg, > Coenzyme Q10, 900 mg, and a cocktail of other stuff aimed at stiff joints, > flagging memory and getting old and (other than PD) decrepit. > c. The real possibility of the subjectiveness of the examinations giving > inaccurate results. I was told that evidence of cogwheeling, strong when I > entered the study was practically non existent and that my gait was better. > Hard things to judge since I was only Stage one when I began. I do know that > the micrographia has abated somewhat although the tremor has increased. > > In any event, I'm sorry I left the study and attempted to rejoin but I had > burned a bridge too far by not taking the medication for three months. > > My opinion hasn't changed. If you can afford and tolerate the travel; if you > can stick yourself with a needle twice a day religiously (this actually gets > easier over time) then apply for the study and if accepted, join it. > > 2. PDrecoverers > This is an alternative theory group who are trying a form of acupuncture > combined with massage (I hope I'm not oversimplifying) to effect a cure. > There is a belief that severe injuries to the foot in the past are at the > root of the PD but I''m a little fuzzy on this. There is a main proponent of > the theory named Janice who has written about the theory. If you join, ask > the list for someone to give you background information better than what I > have given here because if you only read the posts, you'll feel as if you've > arrived in the middle of the story. None of the foregoing is intended to be > light hearted or pejorative. This is a serious group of people with PD who > are trying an alternative method of coping and in the best case, curing. > The group can be joined by sending an Email to: > [log in to unmask] > > 3. Bookmark the following site for a wealth of information including access > to the Archives: > <A HREF="http://www.pdindex.org/">PD INDEX: A directory of Parkinson's disease information on the Internet</A> > > I do tend to go on and on once wound up. > > Paul H. Lauer > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn