Please delete my name and address from the Parkinson's Information Exchange. Thank you. >---------- >From: Automatic digest processor[SMTP:[log in to unmask]] >Sent: Thursday, April 10, 1997 12:30 PM >To: Recipients of PARKINSN digests >Subject: PARKINSN Digest - 9 Apr 1997 to 10 Apr 1997 - Special issue > >There are 21 messages totalling 952 lines in this issue. > >Topics in this special issue: > > 1. Vitamin E > 2. Udall: We are H.R. 1260 (2) > 3. Udall: We are S.535 in the Senate > 4. New Drug May Reduce PD Symptoms > 5. Introduction of Udall Bill (2) > 6. Congressional record article on fetal research 3 pages long Dale > sevarance > 7. [Fwd: [Fwd: Helms in NC]] > 8. GPI-1046 > 9. What the heck? > 10. Questions questions questions > 11. Parkinsons Chat Channel(fwd) > 12. continuation of second message > 13. PD and Low Blood Pressure (2) > 14. conclusions and thoughts re the speech survey > 15. Intro another lost caregiver where do we start. > 16. Canadian Parkinson's Resources (Was another lost caregiver where do we > start) > 17. Sinemet Dosages > 18. UDALL BILL INTRODUCED press release > >---------------------------------------------------------------------- > >Date: Thu, 10 Apr 1997 00:06:28 -0400 >From: Forrests Mom <[log in to unmask]> >Subject: Re: Vitamin E > >If my hair analysis came back and said I had toxic levels of mercury in >my system, and my health was failing, I would find a dentist to take them >out, luckily detoxing mercury is not as slow or as hard as lead, but it >still is a slow process. > It is kind of the same thing with the women who had the breast implants, >the ones with the implants that were getting ill, had to have them removed >to improve their health, but this does not mean that it will make everyone >who has these implants sick. > I have not studied mercury poisioning very much, so I would make sure >whatever test indicated that it was toxic was correct, before I would go >thru the pain and to the expense of this removal. > Linda Forrest's Mom > >In-reply-to: Your message dated "Wed, 09 Apr 1997 18:14:18 -0400" > <[log in to unmask]> > >>Like, what are we supposed to do with the mercury fillings in our >>teeth, eh? > >------------------------------ > >Date: Thu, 10 Apr 1997 03:31:10 -0400 >From: Phil Tompkins <[log in to unmask]> >Subject: Udall: We are H.R. 1260 > >Here's what I found at Library of Congress web site >http://thomas.loc.gov/bss/d105query.html#keyword >this morning. The Udall bill has a number in the House. (The Senate >version wasn't posted yet): > >H.R.1260 > >SPONSOR: Rep Upton, (introduced 04/09/97) > >OFFICIAL TITLE AS INTRODUCED: > >A bill to amend the Public Health Service Act to provide for the >establishment of a program for research and training with respect to >Parkinson's disease. > >HOUSE ACTION(S): > >Apr 9, 97: Referred to the House Committee on Commerce. >[The Committee on Commerce has a sub-committee on Health and the >Environment. Rep. Upton is a member of both.] > >109 COSPONSORS: [Jim Cordy lists 111!] > > Rep Waxman - 04/09/97 > Rep Murtha - 04/09/97 > Rep Abercrombie - 04/09/97 > Rep Allen - 04/09/97 > Rep Ackerman - 04/09/97 > Rep Baldacci - 04/09/97 > Rep Barrett, T. - 04/09/97 > Rep Bereuter - 04/09/97 > Rep Berman - 04/09/97 > Rep Blagojevich - 04/09/97 > Rep Blumenauer - 04/09/97 > Rep Borski - 04/09/97 > Rep Boucher - 04/09/97 > Rep Brown, G. - 04/09/97 > Rep Campbell - 04/09/97 > Rep Capps - 04/09/97 > Rep Cardin - 04/09/97 > Rep Carson - 04/09/97 > Rep Chambliss - 04/09/97 > Rep Clayton - 04/09/97 > Rep Condit - 04/09/97 > Rep Coyne - 04/09/97 > Rep Davis, T. - 04/09/97 > Rep Deal - 04/09/97 > Rep DeFazio - 04/09/97 > Rep Dellums - 04/09/97 > Rep Dingell - 04/09/97 > Rep English - 04/09/97 > Rep Eshoo - 04/09/97 > Rep Evans - 04/09/97 > Rep Faleomavaega - 04/09/97 > Rep Fazio - 04/09/97 > Rep Filner - 04/09/97 > Rep Flake - 04/09/97 > Rep Foglietta - 04/09/97 > Rep Foley - 04/09/97 > Rep Forbes - 04/09/97 > Rep Frank - 04/09/97 > Rep Franks, B. - 04/09/97 > Rep Frelinghuysen - 04/09/97 > Rep Frost - 04/09/97 > Rep Fox - 04/09/97 > Rep Gallegly - 04/09/97 > Rep Gilman - 04/09/97 > Rep Gonzalez - 04/09/97 > Rep Gutierrez - 04/09/97 > Rep Hastings, A. - 04/09/97 > Rep Hefner - 04/09/97 > Rep Hilliard - 04/09/97 > Rep Hinchey - 04/09/97 > Rep Horn - 04/09/97 > Rep Jackson - 04/09/97 > Rep Johnson, E. - 04/09/97 > Rep Kennedy, P. - 04/09/97 > Rep Kennelly - 04/09/97 > Rep Klug - 04/09/97 > Rep Kolbe - 04/09/97 > Rep Lampson - 04/09/97 > Rep Lewis, John - 04/09/97 > Rep Lofgren - 04/09/97 > Rep Lowey - 04/09/97 > Rep Maloney, C. - 04/09/97 > Rep Martinez - 04/09/97 > Rep Mascara - 04/09/97 > Rep McCarthy, C. - 04/09/97 > Rep McDade - 04/09/97 > Rep McKinney - 04/09/97 > Rep Meek - 04/09/97 > Rep Menendez - 04/09/97 > Rep Miller, G. - 04/09/97 > Rep Mink - 04/09/97 > Rep Molinari - 04/09/97 > Rep Morella - 04/09/97 > Rep Neal - 04/09/97 > Rep Norton - 04/09/97 > Rep Oberstar - 04/09/97 > Rep Olver - 04/09/97 > Rep Owens - 04/09/97 > Rep Pallone - 04/09/97 > Rep Pascrell - 04/09/97 > Rep Pastor - 04/09/97 > Rep Payne, D. - 04/09/97 > Rep Pelosi - 04/09/97 > Rep Price - 04/09/97 > Rep Pryce - 04/09/97 > Rep Quinn - 04/09/97 > Rep Ramstad - 04/09/97 > Rep Rothman - 04/09/97 > Rep Sabo - 04/09/97 > Rep Sanchez - 04/09/97 > Rep Sanders - 04/09/97 > Rep Schiff - 04/09/97 > Rep Serrano - 04/09/97 > Rep Shadegg - 04/09/97 > Rep Shays - 04/09/97 > Rep Skaggs - 04/09/97 > Rep Skeen - 04/09/97 > Rep Tauscher - 04/09/97 > Rep Thompson - 04/09/97 > Rep Thurman - 04/09/97 > Rep Towns - 04/09/97 > Rep Traficant - 04/09/97 > Rep Underwood - 04/09/97 > Rep Vento - 04/09/97 > Rep Wise - 04/09/97 > Rep Yates - 04/09/97 > Rep Bonior - 04/09/97 > Rep Hefley - 04/09/97 > Rep Woolsey - 04/09/97 > > >Phil Tompkins > >------------------------------ > >Date: Thu, 10 Apr 1997 04:08:19 -0400 >From: Phil Tompkins <[log in to unmask]> >Subject: Udall: We are S.535 in the Senate > >>From the same web page from which I got the info on the House >version: > >S.535 > >SPONSOR: Sen McCain, (introduced 04/09/97) > >OFFICIAL TITLE AS INTRODUCED: > >A bill to amend the Public Health Service Act to provide for the >establishment of a program for research and training with respect to >Parkinson's disease. > >Senate Action(s): Apr 9, 97: > >Read twice and referred to the Committee on Labor and Human >Resources. > >36 COSPONSORS: [Jim Cordy lists 37] > > Sen Wellstone - 04/09/97 > Sen Glenn - 04/09/97 > Sen Cochran - 04/09/97 > Sen Burns - 04/09/97 > Sen Moynihan - 04/09/97 > Sen Harkin - 04/09/97 > Sen Dodd - 04/09/97 > Sen Leahy - 04/09/97 > Sen Bond - 04/09/97 > Sen Bingaman - 04/09/97 > Sen Campbell - 04/09/97 > Sen Mack - 04/09/97 > Sen Torricelli - 04/09/97 > Sen Grassley - 04/09/97 > Sen Inouye - 04/09/97 > Sen Hollings - 04/09/97 > Sen Robb - 04/09/97 > Sen Durbin - 04/09/97 > Sen Boxer - 04/09/97 > Sen Bryan - 04/09/97 > Sen Daschle - 04/09/97 > Sen Ford - 04/09/97 > Sen D'Amato - 04/09/97 > Sen Reid - 04/09/97 > Sen Lautenberg - 04/09/97 > Sen Mikulski - 04/09/97 > Sen Faircloth - 04/09/97 > Sen Levin - 04/09/97 > Sen Collins - 04/09/97 > Sen Kerry - 04/09/97 > Sen Murray - 04/09/97 > Sen Reed - 04/09/97 > Sen Kennedy - 04/09/97 > Sen Santorum - 04/09/97 > Sen Feinstein - 04/09/97 > Sen Rockefeller - 04/09/97 > >Phil Tompkins > >------------------------------ > >Date: Wed, 9 Apr 1997 23:19:49 -0400 >From: Martin K Bayne <[log in to unmask]> >Subject: New Drug May Reduce PD Symptoms > >http://www.cnn.com/HEALTH/9704/09/nfm/parkinsons/index.html > >------------------------------ > >Date: Thu, 10 Apr 1997 08:44:12 -0400 >From: "Susan D. Hamburger" <[log in to unmask]> >Subject: Introduction of Udall Bill > > The introduction of the Morris K. Udall Research and Education Bill >was held in the Dirksen Senate office building yesterday, with the press, >Udall family, representatives from PAN, APDA, NPF, PDF, a Parkinson's >researcher from the Univ of Virginia, and PWP from the Washington,, Arizona, >Pennsylvania, and New York/New Jersey area. It was a wonderful occasion. I >was so proud to be there with Stan and the other PWP and to finally meet >some of the wonderful people I have 'talked' on this List. > > Speeches were given by all the House and Senate sponsors (Wellstone, >McCain, Upton, and Waxman), Norma Udall(Mo's wife), Brad Udall(Mo's son), >Bob Dolezal, Peter Morabito(NPF chapter),and an MD from Univ of VA who gave >an update on the most exciting possibilities in increased PD research >funding. The most interesting one I heard from him was that of genetically >engineering one's own cells and replacing them in hopes of them being able >to produce dopamine. > > After lunch, we made the rounds of visiting our representative and >two senator's offices - all of whom are original co-sponsors because we've >been writing them letters, faxes, etc.- to thank them and to give them some >literature on the Bill. It was a wonderful day and we are SOOO hopeful that >the Bill will pass both Houses this year. Senator Wellstone was VERY >positive and gave a very inspiring short speech. Minnesotan's - you have a >GREAT Senator!! BTW, both of his parents have PD. > > Please contact your Rep and Senators in any way you are able to. >With many of them, that's all it takes, is to hear from one of their >constituents. And you would be surprised to know that there are many who >don't even know about this Bill because it has not been brought to their >attention that it has been introduced again. > > Best wishes to all. > > Susan Hamburger, CG for Stan 62/16+ > > >It's a funny thing about life; if you refuse to accept anything but the >best, you very often get it. > W. Somerset Maughm > >------------------------------ > >Date: Thu, 10 Apr 1997 09:06:04 -0400 >From: Dale Severance join list <[log in to unmask]> >Subject: Congressional record article on fetal research 3 pages long Dale > sevarance > >>From the Chicago Tribune, April 30, 1995 > >[FROM THE CHICAGO TRIBUNE, APRIL 30,19951 > >An Ethical Dilemma--In Defense of Fetal Tissue Transplants to Treat >Neurological Disorders > >(BY JOAN BECK) > >He was 59 years old and he had had Parkinson's disease for eight years. His >body was becoming increasingly rigid andi obile. He had trouble moving and >talking clearly. He had tremors he couldn't stop and he had to give up his >job. The medication that had helped early in the onset of the illness could >no longer give him much relief, despite increasing doses. the disease >inexorably progressed, he decided to try a new, experimental treatment, >despite the intense political and medical controversy that has marked its >development. > >Surgeons inserted several grafts of fetal tissue into one side of his brain. > A month later, they repeated the procedure on the other side. The >transplants came from seven donors, aborted babies from 6 1/2 to 9 weeks old. > >Within a few weeks after the surge , the man's condition improved markedly, >according to a report in the current issue of the New England Journal of >Medicine. He could once again handle daily activities, even take part in an >active exercise program. He needed less medication, but now it was much more >effective. > >A year and a half after the first transplant, the patient had surge on his >ankle to repair damage from a fracture years earlier. he was recovering from >the operation, he suffered a massive pulmonary embolism and died. > >Studying his brain after death, doctors found conclusive evidence that the >transplants had worked as hoped. The fetal neurons had survived, grown and >were functioning, replacing the patient's damaged brain cells, just as the >improvement in his symptoms had indicated. > >estimated 200 transplants of fetal tissue into human brains have been done >over the past several years. Some have been performed in other countries, >some under scientifically questionable circumstances. Results have been >uneven and often discouraging. > >The case reported this week is important because it is the first to prove >that fetal tissue transplants can survive and function and that they can be >linked to a patient's improvement. > >The long-range implications are medical, political and ethical. The success >sto offers eventual hope for hundreds of thousands patients, not only with >Parkinson's disease but also with Huntington's disease, zheimer's disease and >other disorders caused by brain cell impairment and destruction for which no >good treatment or cure is now available. > >Much research is still necessary, however. More data are needed about >optimal size of the grafts, whether the tissue can be frozen in advance, >which patients are likely to benefit, how long improvement will last, whether >the underlying disease will eventually destroy the new brain cells. > >Fetal tissue is considered necessary for transplants because it can survive >and grow where grafts of more mature cells do not. It can take on new >biological functions, unlike other cells. d the recipient's body is not so >likely to reject it. > >But the research has been slowed in the past for political and ethical >reasons. > >The problem is that such transplants almost always must come from >abortions--and that has raised fierce and intractable opposition from >pro-life forces. They see the possibility that women will deliberately get >pregnant and have an abortion to provide a graft for a loved one--or even >worse, sell the tissue on some sort of medical black market. > >Even with tight controls, abortion opponents argue, using tissue from aborted >fetuses will make it easier for women to decide to have an abortion because >they can rationalize that some desperately ill person could benefit and that >might ease any guilt feelings they may have. > >Should fetal transplants eventually prove to be of great medical benefit and >become widely used, it will be even harder to rally the nation to oppose >abortion--the source of such grafts--pro-life leaders fear. > >In response to anti-abortion fervor, the Reagan administration prohibited the >use of federal funds for research using > >fetal tissue for humans, a major setback because most research grants are >based on federal approval. Some experiments did continue, however, using >private money, and in other countries. > >Under mounting pressure from Congress, President Bush attempted a compromise. > He authorized a grant of more than $2 million to study whether fetal tissue >obtained as a result of miscarriages and ectopic pregnancies--not deliberate >abortions--could be used for transplants. > >The answer turned out to be no. Out of 1,500 such fetuses tested, all but >seven were unsuitable because of chromosome errors (a major cause of >miscarriage) or problems with bacteria and virus contamination. > >In 1993, President Clinton finally lifted the ban on federal funding for >fetal tissue research. The use of such transplants is carefully governed by >state and federal laws and govenitnent and medical guidelines similar to >those that cover other transplants, including the Uniform atomical Gift Act >which has been adopted in all states. > >The starkf acts remain.Abortion is legal in the United States.About.5 million >abortions >occur ever year. Aborted tissue is now discarded, even though it holds the >potential for successfully treating several terrible, intractable diseases. > >Abortion is a tragedy, as is death from gunshot wounds and traffic accidents. > But the success of fetal tissue grafts isn't going to encourage abortion any >more than organ transplants increase car crashes and murders. > >Research is under way to find other means to treat neurological disorders, >some of it building on findings from fetal tissue studies. But until these >experiments are successful, surely it is more ethical and merciful to try to >use fetal tissue than simply destroy it. > >------------------------------ > >Date: Thu, 10 Apr 1997 12:02:08 -0400 >From: "Stephanie M. Dorsch" <[log in to unmask]> >Subject: [Fwd: [Fwd: Helms in NC]] > >X-Mozilla-Status: 0001 >Message-ID: <[log in to unmask]> >Date: Thu, 10 Apr 1997 08:38:29 -0700 >From: "Stephanie M. Dorsch" <[log in to unmask]> >Organization: myrtle online >X-Mailer: Mozilla 2.02E-KIT (Win16; U) >MIME-Version: 1.0 >To: [log in to unmask] >Subject: [Fwd: Helms in NC] >Content-Type: multipart/mixed; boundary="------------CBC5F785E6A" > >This is a multi-part message in MIME format. > >--------------CBC5F785E6A >Content-Type: text/plain; charset=us-ascii >Content-Transfer-Encoding: 7bit > >Barbara, >Wednesday, I spoke with Pat Thompson, responsible for proclamations for >the State of North Carolina. She expressed willingness to try to assist >me. Said," wished I had contacted her last month to give her more time." >Reminded me, that next year if we do this again to give her more time to >respond. >Sent her via fax: >copies from Parkinson's Information Exchange: >Please Call Your Governor/Awareness Month..... >the Proclamation used by the State of Maine.... > >Forwarded a copy of a letter I sent to all the NC Congressonal Reps. > >She was to send a copy of what was the decision to do; to the Exchange >Network. >Between this project and planning a year of activities for my Mom's 80 >Birthday, March 12,1997 "Things are happening each week" and she doesnot >have a clue! >my mind is truely in the clouds. I refer to my "friend" of 8 years as >only an acquaintance. I am constantly thinking of fun things to do so I >don't think. >L&K S > >--------------CBC5F785E6A >Content-Type: message/rfc822 >Content-Transfer-Encoding: 7bit >Content-Disposition: inline > >Return-Path: [log in to unmask] >Received: from emout03.mail.aol.com (emout03.mx.aol.com [198.81.11.94]) by >mail.interpath.net (8.8.5/v1.0-cgb) with ESMTP id VAA03038 for ><[log in to unmask]>; Tue, 1 Apr 1997 21:17:23 -0500 (EST) >From: [log in to unmask] >Received: (from root@localhost) > by emout03.mail.aol.com (8.7.6/8.7.3/AOL-2.0.0) > id VAA03071 for [log in to unmask]; > Tue, 1 Apr 1997 21:19:19 -0500 (EST) >Date: Tue, 1 Apr 1997 21:19:19 -0500 (EST) >Message-ID: <[log in to unmask]> >To: [log in to unmask] >Subject: Helms in NC >Content-Length: 455 >Status: >X-Mozilla-Status: 0001 > >Hi Stephanie- > I am trying to contact as many people in NC as I can asking them to please >call or write to Senator Jesse Helms and ask him to co-sponsor the Udall bill >for Parkinson's research. > >If you know of anyone else in NC please ask them to call also. I live in NJ >and I will send a letter but it's better if it's from the same state. > >Ask for the Legislative Aid named Karen Koles. >phone 800-962-3524 >fax 202-228-1339 > >thanks for helping, >Barbara > >--------------CBC5F785E6A-- > >------------------------------ > >Date: Thu, 10 Apr 1997 09:23:13 -0400 >From: Jerry <[log in to unmask]> >Subject: GPI-1046 > >This report has been on CBS news last night and again this morning. It >is being called a potential "CURE" for Parkinson's. > > Guilford Receives Patent for > Compounds that Promote Nerve > Growth > > BALTIMORE, March 27 /PRNewswire/ via Individual Inc. -- > Guilford Pharmaceuticals Inc. (Nasdaq: GLFD) today announced > that the company has been issued U.S. Patent No. 5,614,547 from > the U.S. Patent and Trademark Office relating to the compositions > and uses of a series of compounds that promote nerve growth > and repair for the treatment of neurodegenerative disorders. > > These compounds are neuroimmunophilin ligands, which are > orally-active and cross the blood-brain-barrier in animal models. > The results of some of Guilford's work in this field with >GPI-1046, > which is covered by the patent, were published earlier this month > in the Proceedings of the National Academy of Sciences (U.S.A.), > Volume 94, Number 5, pp. 2019-2024, 1997. > > "We are very pleased to announce the issuance of our first U.S. > patent in our neuroimmunophilin program. To date, we have filed > numerous U.S. and foreign patent applications relating to > neuroimmunophilin compounds and their uses. Guilford > scientists, utilizing structure-based drug design and >combinatorial > chemistry techniques, have synthesized hundreds of small > molecule neuroimmunophilin ligands in several distinct chemical > series, which possess the ability to cause nerves to grow or > regenerate in animals. We are actively investigating our > neuroimmunophilin ligands in animal models of a variety of > chronic and acute neurodegenerative disorders, such as > Parkinson's Disease, Alzheimer's Disease, multiple sclerosis, > traumatic spinal cord injuries, peripheral neuropathies, and > stroke," commented Dr. Craig R. Smith, President and C.E.0. of > Guilford. > > Guilford Pharmaceuticals Inc. is a biopharmaceutical company > engaged in the development of polymer-based therapeutics for > cancer, and novel products for the diagnosis and treatment of > neurological diseases, including Parkinson's disease, Alzheimer's > disease, stroke, severe head trauma, spinal cord injuries, >multiple > sclerosis, peripheral neuropathies, and cocaine addiction. > > This press release contains forward-looking statements that > involve risk and uncertainties, including those described in the > Company's Form S-3 (SEC Registration No. 333-23001), that could > cause the Company's actual results and experience to differ > materially from anticipated results and expectations expressed in > these forward-looking statements. In particular, pre-clinical >results > are based on a limited number of animal models, and there can be > no assurance that the Company will be able to successfully > develop one or more of its compounds into safe and effective > FDA-cleared drugs. While the Company has filed numerous > patent applications claiming neuroimmunophilin ligands for > neurotrophic applications in the U.S. and abroad, the > patentability, validity, priority, enforceability, and > non-infringement of claims made in such applications cannot be > assured. SOURCE Guilford Pharmaceuticals Inc. > > /CONTACT: Angela Webber of Guilford Pharmaceuticals, > 410-631-6449; for media, Brad Miles of B.M.C. or for investors, > Jonathan Fassberg of The Trout Group, 212-477-9007/ /Guilford > Pharmaceuticals press releases available through Company News > On-Call by fax, 800-758-5804, ext. 112882, or at > http://www.prnewswire.com/ (GLFD) > > [Copyright 1997, PR Newswire] >-- >Visit my WebSite! http://www.phoenix.net/~jfinch >Where the Cowboy Rides Away.... >Stories and music of the country life. > >------------------------------ > >Date: Thu, 10 Apr 1997 09:31:46 -0400 >From: seese <[log in to unmask]> >Subject: Re: What the heck? > >A You go right ahead and be "paranoid". I give you our >pharmacist's reply. Yes, he has heard of it. Yes, he has had info. Yes, it >will be released soon. he also thinks these pre-release messages are to >build up demand!! >Create a need and fill it.. > We have good pharmacists and they saw us through Sinemet CR running >all over the countryside to find some,etc. They located the samples for us, >etc. >For Gordon, it was a total waste of time and energy, as he could not >tolerate it. Back to the regular stuff. Since then I'm afraid I belong in >your group, too. > >Thea Seese CG for Gordon 69/21 > >------------------------------ > >Date: Thu, 10 Apr 1997 09:38:08 -0400 >From: Pdf Cpmc <[log in to unmask]> >Subject: Re: Udall: We are H.R. 1260 > >For those who haven't yet heard, the Senate number is 535.- R. Elliott > >------------------------------ > >Date: Thu, 10 Apr 1997 10:20:19 -0400 >From: Pdf Cpmc <[log in to unmask]> >Subject: Re: Introduction of Udall Bill > >In a message dated 97-04-10 09:40:43 EDT, you write: > >> >> > >Great report on the Udall bill kick-off! It was good of you to do this for >everyone who was not present. > >I enjoyed meeting you and look forward to continuing our conversation about >Washington. I'll send you materials, as promised. > >Best. - Robin Elliott > >------------------------------ > >Date: Thu, 10 Apr 1997 12:12:38 -0400 >From: Jenny Slater <[log in to unmask]> >Subject: Questions questions questions > >I've been lurking here on behalf of a non-internet friend of mine (aged >late 50s) who was diagnosed PD (99% certain) a year ago. She is a >freelance journalist who is obviously worried about how much longer she >will be able to work, support and care for herself. She lives alone, and >has no immediate family. > >MADOPAR >She's been on the lowest dosage of Madopar for the last year. Will she >know when to increase the dosage - are there signs? Does Madopar ever >stop being effective? Is there a timescale for symptoms/deterioration? > >MUSCLE PAIN >At the moment the muscles in her right arm are very painful. She did tear >her ligaments carrying a heavy camera case some time ago, but is worried >that the pain may be related to PD. If so, will her left side eventually >be affected as well? > >PALLIDOTOMY >Is there any evidence that pallidotomy should be done in the earlier >stages of PD? Is it worth her having a PET scan? Does this show up any >more than a MRI scan, e.g the scale of depletion of dopamine? > >Thanks in advance for all your help. It's been so educational over the >last few weeks, and it must be such a lifeline to PWPs and carers - I am >touched by the care and support given to everyone by everyone. > >JLT Slater >[log in to unmask] >London UK > >------------------------------ > >Date: Thu, 10 Apr 1997 11:12:02 -0400 >From: John Cottingham <[log in to unmask]> >Subject: Re: Parkinsons Chat Channel(fwd) > >At 05:48 PM 4/9/97 -0400, you wrote: >>Me too. I have a MAC Performa 631CD operating on AOL 2.7. So. Does this mean >>I can/cannot get on the IRC Parkinsons Chat Channel? And if yes, how? >> >>Whichever the case, thanks in advance for the reply. >> >>Duane and Patricia >> >> > >Pat, I don't know if you will be able to make the trip to the #parkinsons >channel on the undernet with the Mac...but I need a determined beta tester to >see how it can be done. > >The version of your AOL software needs to be updated to 3.0...the keyword is >UPGRADE. > >Chat clients are available for download by typing the keyword IRC. The >program used by most Mac users who are not on AOL is iRCLE. > >Keep me abreast of your encounters. > >Thanks > > > >[log in to unmask] That man may last, but never lives, > Who much receives, but nothing gives; >HomeBoy #Parkinsons Whom none can love, whom none can thank,-- > Creation's blot, creation's blank. >John Cottingham Thomas Gibbons (1720-1785): When Jesus dwelt. > >------------------------------ > >Date: Thu, 10 Apr 1997 07:20:39 -0400 >From: Allan Goldman <[log in to unmask]> >Subject: continuation of second message > >This should complete the truncated messages sent earlier. To contune >the second message, Ontogeny in Cambridge Mass. is working with >growth factors that can, in a Petri dish, transform stem cells into >mature dopamine producers. >Amgen has begun clinical trials of GDNF, glial derived neurotrophic >factor, injected into the brain, as presumably will Ontogeny's . >I just today found a third report- this one is in the 4 April '97 >issue of Science.It is on the web at http://www.sciencemag.org. >To summarize, it reports that multipotential cells in the central >nervous system have been identified and defined mitogens have caused >proliferation of these cells in vitro{ in a Petri dish}. Factors that >control the differentiation of fetal stem cells into neurons and glia >have been defined in vitro and multipotential cells wiyh similar >signaling logic can be cultured from the adult central nervous >system. Thus neuroepithelial cells have the potential to integrate >into many brain regions. >It looks as if some real medical breakthroughs are occuring on the >non-invasive front! I don't relish the idea of catheters and >surgery! >Allan Goldman [log in to unmask] > >------------------------------ > >Date: Thu, 10 Apr 1997 11:30:55 -0400 >From: Allan Rosenberg <[log in to unmask]> >Subject: Re: PD and Low Blood Pressure > >The parkinson's medication contribute to the low blood pressure and it is >quite common, leading to fainting etc. Add salt to the diet it might help. > >Allan > >------------------------------ > >Date: Thu, 10 Apr 1997 03:19:54 -0400 >From: Brian Collins <[log in to unmask]> >Subject: Re: conclusions and thoughts re the speech survey > >To: Tom Riess, Thanks for an excellent analysis of speech problems, and >a useful set of recommendations. I am fortunate in not having a speech >problem >(so far), but I was reminded of a technique which I used to use when I was >still employed, and had to conduct really serious high-pressure >trans-Atlantic >telephone conversations. Very simple really- I closed my eyes. I was making >use of the same point which you make, regarding speech in the absence of >thought formulation: By reducing the number of parallel inputs all fighting >for the brain's attention, it frees more channels to devote to the task of >talking. >Regards, >-- >Brian Collins <[log in to unmask]> > >------------------------------ > >Date: Thu, 10 Apr 1997 07:35:13 -0400 >From: Brian Collins <[log in to unmask]> >Subject: Re: Intro another lost caregiver where do we start. > >On Tue 08 Apr, Peter Street wrote: >> My father has PD. He is 75 years old and was told he had PD about 6 six >> years ago. Since then it has progressed at an incredible speed. In the last >> year he has had an increasing problem with confusion, and lately sever >> hallucinations. So bad in fact that last week it force us to move him to a >> hospital setting. He has been very mobile up to and at the present although >> he has jaw, hand and leg tremors and walks in a slow shuffle. We are trying >> to vary his mediation to stop the mental problems and are hoping for the >> best. The doctors we are dealing with are really bad at giving out >> information and we also have probably made every possible mistake and the >> way to this point. It was a real relief to find this site. >> Can anyone give us some information or point us in the direction in >> regards to drug problems related to confusion and hallucinations in PD. We >> are hearing the words care centre alot and would rather hear the phase road >> to recovery. >> >> Any and all information greatly needed. >> >> Thank you all >> >> Peter Street >> >> [log in to unmask] >> >> >Hello Peter, the first step which we need is for you to list the drugs which >your father is taking. Can you list the Drug name, the quantity, and the time >at which he takes it. >Regards, >-- >Brian Collins <[log in to unmask]> > >------------------------------ > >Date: Thu, 10 Apr 1997 11:46:35 -0400 >From: YoungPD I&R <[log in to unmask]> >Subject: Canadian Parkinson's Resources (Was another lost caregiver where do > we start) > >Dear Listfriends: > >Although the North American traffic on this list is skewed a bit more toward >American groups and resources, there are a number of Canadian associations >which can also provide Movement Disorder Clinic/Specialist referrals and >information on local support groups. > >According to information provided by the PFC (Parkinson Foundation of >Canada), there are approximately ten Movement Disorder Clinics in Canada >alone. To contact the PFC, you may either write or call (in Canada only) > >Parkinson Foundation of Canada >310 Bay St. #710 >Toronto Ontario >Canada >M5H 272 >1-800-565-3000 (English) >1-800-720-1307 (French) > > >There are other groups in Canada which may also be worth a try. > >Parkinson's Society of Ottawa-Carleton >Ottawa Civic Hospital >1053 Carling Avenue >Ottawa, Ontario >KIY 4E9 > >The Parkinson's Society of Southern Alberta >600 Sloane Square >5920 - IA STreet, SW >Calgary, Alberta T2H 0G3 >416- 258-2595 > >Victoria Parkinson's Association >Vancouver, 1-800-668-3330 > > >We hope this information helps - and if there are more centers and >associations, we'd love to hear about them. > >Sincerely, > >Sherline >Secretary >APDA Young Parkinson's I&R Center >[log in to unmask] >http://members.aol.com/apdaypd > >------------------------------ > >Date: Thu, 10 Apr 1997 12:13:01 -0400 >From: Allan Rosenberg <[log in to unmask]> >Subject: Sinemet Dosages > >I am curious as to what constitutes a low, average or high dose of >Sinemet/Sinemet CR. > >Barbara has just been increased to the following regimen, would it be >considered "abnormally" high or is there "room to grow" ? > >Sinemet 25/100 3 tablets daily >Sinemet CR 50/200 7 tablets daily >Permax .25mg 11 tablets daily > >Thanks. > >Allan > >------------------------------ > >Date: Thu, 10 Apr 1997 12:26:02 -0400 >From: "Hilton, Carole" <[log in to unmask]> >Subject: Re: PD and Low Blood Pressure > >Jackie, You write.... > >>I'm writing on behalf of my 80-year-old >>father-in-law, who's had Parksinson's for a few years. During the last 2 >>years or so, he's had a problem with orthostatic hypotension. In other >>words, sometimes, when he stands up, his blood pressure drops extremely >>low. He's passed out a few times, and had to be taken to the emergency >>room a few times. > > >>Also, we live in the L.A. area. I don't know if this question is >>appropriate, but if it is--does anyone know a good PD specialist here? >> >Dr. Abraham Lieberman, clinical director of the National Parkinson >Foundation, comes to Los Angeles twice a month to see patients in >consultation. He sees patients at the Good Samaritan Hospital. If you >are interested in possibly having your father-in-law see Dr. Lieberman, >I can help to arrange it. Carole > >>Carole Hilton, LCSW >>Parkinson's Coordinator >>NPF Patient Services and Outreach Program >>The Neurosciences Institute, Good Samaritan Hospital >>637 S. Lucas, #501 >>Los Angeles, CA 90017 >>800-841-8765 [log in to unmask] > >------------------------------ > >Date: Thu, 10 Apr 1997 12:30:32 -0400 >From: [log in to unmask] >Subject: UDALL BILL INTRODUCED press release > >PRESS RELEASE contact :Nancy Ives 202-224-7130 April 10, 1997 >from U.S. Senator John McCain Arizona > >McCain Fights To Increase funding For Parkinson's Disease Research. >-Authorizes $100M for Research, Establishes 10 Research Centers & >Clearinghouse- > > WASHINGTON D.C. -- In an effort to significantly increase the funding >for Parkinson's disease research, Senator John McCain (R-AZ) introduced the >Morris K. Udall Parkinson's Research and Education Act of 1997 that would >authorize $100 million for disease research, establish ten research centers >across the country, and create a national Parkinson's Disease Information >Clearinghouse. The bill honors Arizona Congressman Mo. Udall, currently >afflicted with Parkinson's who retired in 1991 after serving 30 years in the >House. > > "It is imperative that we give our scientific researchers the necessary >funding and support to combat this debilitating, degenerative disease that >afflicts millions of Americans," said McCain. "This bill will help us make >significant scientific progress in finding a cure for a disease that knows no >boundries, does not discriminate and strikes without warning." > > With approximately 50,000 people diagnosed with Parkinson's disease each >year, the bill increases the authorization for Parkinson's disease direct >research from $32 million in FY96 to $100 million in FY97. It also >establishes up to ten Morris K. Udall Centers for Research on Parkinson's >Disease throughout the nation. Set-up in a manner which would allow them to >become a source for developing teaching programs for health care >professionals and disseminating programs for public use, these centers would >conduct basic and clinical research in addition to delivering care to >Parkinson's patients. > > In addition, the bill creates a national Parkinson's Disease Information >Clearinghouse which would gather and store pertinent data on Parkinson's >patients and their families and facilitate and enhance the knowledge and >understanding of Parkinson's disease. In order to recognize investigators >whose work has demonstrated significant potential for the diagnosis or >treatment of the disease, the bill would establish a Morris K. Udall >Excellence Award. > > In the 104th congress, a similar bill (S.684) unanimously cleared the >Labor Committee and passed the Senate as part of the National Institute of >Health (NIH) reauthorization bill (S.1897). However, despite the bill's >broad bipartisan support -- 62 co-sponsors in the Senate and 235 co-sponsors >in the House -- it failed to reach the House floor for a vote. The bill, as >introduced today, ccurrently has 36 co-sponsors. > > "We must support and enact the Morris K. Udall Parkinson's Research and >Education Act of 1997," said McCain. "We can not allow this opportunity to >make significant progress in the area of Parkinson's research slip away >because of a lack of support for our nation's scientific researcher." > >------------------------------ > >End of PARKINSN Digest - 9 Apr 1997 to 10 Apr 1997 - Special issue >****************************************************************** >