Date: Wed, 21 Dec 94 23:38:55 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#160 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#160, 20 December 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot's Disease == == == == This e-mail list has been set up to serve the world-wide == == ALS community. That is, ALS patients, ALS researchers, == == ALS support/discussion groups, ALS clinics, etc. Others == == are welcome (and invited) to join. The ALS Digest is == == published (approximately) weekly. Currently there are == == 430+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == Sorry, but this is *not* a LISTSERV setup. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Re: ALS DIGEST BACK ISSUES 2 .. Television Alert 3 .. seeking information 4 .. BDNF trial openings? 5 .. Lou Gejrig's Disease 6 .. ALS newsgroup? 7 .. Looking for info on Riluzole 8 .. ALS & Chairman Mao 9 .. Neurologist Wanted 10 . from Chicago-Times 11 . Guide to Emotional Support Resources (1) ===== Re: ALS DIGEST BACK ISSUES ========== PART (A) ------------ Date : Mon, 19 Dec 1994 11:51:23 >From : Stuart.Neilson@brunel.ac.uk (hssrsdn) Subject: Re: ALS DIGEST BACK ISSUES Dear Bob, Many thanks for your message about the ALS Digest back issues. The provision of FTP access is in hand, although I have not yet been given a date when the files will be available, or even the instructions for accessing them. I expect that it should be ready before the Christmas break and will mail you as soon as I know that it all works. The Digests will then be available by WWW (the address stays the same) and FTP. Our Computer Centre say that they are unable to provide EMail access, but have assured me that anyone with access to EMail must also have access to FTP (if anyone can help on this, please let me know!). If it is of use to anyone, then I can ZIP digests in bundles of ten or so and either manually mail them or put the .zip files in the archive area. My Director has expressed interest in setting up a listserv list (although neither of us know what this entails), and we would appreciate any guidance you can offer on this. Best wishes, Stuart. PART (B) ------------ Date : Mon, 19 Dec 1994 14:09:05 >From : Stuart.Neilson@brunel.ac.uk (hssrsdn) Subject: Re: ALS DIGEST BACK ISSUES I have just spoken to our user support officer and can now report that all the ALS Digests are available by anonymous FTP from the Brunel FTP server (src.brunel.ac.uk), in the directory "cshsd/alsig/archive". I have checked that I can retrieve files at my end, but would appreciate confirmation that they are available globally. Stuart. (2) ===== Television Alert ========== The following information was provided by the ALS Association; 21021 Ventura Boulevard, #321; Woodland Hills CA 91364. TEL 818-340-7500. 21 December 1994 GOOD MORNING AMERICA (ABC-TV) Segment on ALS patient Daniel Flynn. Air date remains tentative, but it's the best information ABC can give at this time. Segment scheduled for just after 8:00 AM -- in the second hour of the program. Interviewer is Dr. Tim Johnson. 22 December 1994 "GERALDO" PROGRAM Chris Rahimian, Overland Park, Kansas, whose father died of ALS, is a guest on the December 22 "Geraldo" program. The segment will last about 8 minutes. Since "Geraldo" is a syndicated program, it is difficult to tell which outlet in each area carries the program. Check local listings. (3) ===== seeking information ========== Date : Tue, 20 Dec 1994 18:43:20 -0500 >From : SMOPRES@aol.com Subject: seeking information My name is Tom Powers. I was diagnosed with bulbar onset ALS in June of 1994. I am getting weak, and can no longer talk. I'm new to this group, and I realize that some of these questions have probably already been answered. If there is an archive somewhere that I can access, I will gladly try. My two biggest questions right now are about stair chair lifts, and software/hardware which might help me communicate more easily. (I saw the article in digest #156 about DecTalk. There was a short review of this product in the December 20 (Vol. 13, No. 22) issue of PC Magazine. The article didn't provide all that much information though.) If anyone out there has recommendations and/or personal experience with any assitive devices, I would very much appreciate your response. Feel free to contact me directly via private email if you prefer. Thank you very much in advance for your help. Tom Powers SmoPres@aol.com (4) ===== BDNF trial openings? ========== Date : Tue, 20 Dec 94 13:55:01 -0500 >From : "L. Staton Noel" Subject: BDNF trial openings? Does anyone know of a BDNF trial which is currently enrolling patients ? Staton (5) ===== Lou Gehrig's Disease ========== >From : PBurdett@ix.netcom.com (Patricia Burdette) Newsgroups: misc.health.alternative Subject : Lou Gehrig's Disease Date : 14 Dec 1994 23:04:59 GMT Does anyone know of any clinical trials or alternative medicine for Lou Gehrig's Disease (amyotrophic lateral sclerosis)? Thanks. (6) ===== ALS newsgroup? ========== >From : mccann@u.washington.edu (Barbara McCann) Newsgroups: alt.support.mult-sclerosis Subject : ALS newsgroup? Date : 14 Dec 1994 20:51:39 GMT My father-in-law was recently diagnosed with ALS (Lou Gehrig's disease). Does anyone who reads this group know of a newsgroup which deals specifically with ALS? Thank you, Barbara (7) ===== Looking for info on Riluzole ========== >From : pcrawfor@bud.peinet.pe.ca (Patrick Crawford) Newsgroups: sci.med.pharmacy Subject : Looking for info on Riluzole Date : Sun, 18 Dec 1994 16:36:44 One of my patients is looking for information on the medication Riluzole. Apparently it inhibits the release of glutamic acid and is used to treat A.L.S. Does anyone have any information of this medication or places where I could look? Thanks for you help, Pat -------------------------------------------------------------------------- Patrick Crawford Snail Mail:13 Fountain Dr. pcrawfor@peinet.pe.ca Charlottetown, PEI phone:(902)894-8095(home) Canada C1A 6L9 (902)894-8552(work) (8) ===== ALS & Chairman Mao ========== Squalor behind Mao's palace walls. Byline: Bill Gertz Credit: THE WASHINGTON TIMES 12/18/94 Li Zhisui, the personal physician to China's supreme leader Mao Tse-tung, has written a remarkable book on the revolutionary insanity of China under Mao. He also exposes, in an up-close-and-personal account, intimate details of modern China's communist emperor - notably his paranoia, drug addiction, sexual promiscuity and venereal disease. Based on personal experiences as Mao's doctor and confidant between 1954 and 1976, when Mao died, Dr. Li presents an extraordinary picture of the internal political fighting that raged as Mao sought to transform China into a socialist state. By 1974, age caught up to the Great Helmsman. Mao by then was nearly blind from cataracts. Slurred speech led doctors to find he was suffering from a neural disorder, amyotrophic lateral sclerosis, or Lou Gehrig's disease. Bill Gertz is a reporter on the national desk of The Washington Times. THE PRIVATE LIFE OF CHAIRMAN MAO: THE MEMOIRS OF MAO'S PERSONAL PHYSICIAN By Dr. Li Zhisui Translated from the Chinese by Professor Tai Hung-chao With the editorial assistance of Anne F. Thurston. Random House, $30, 682 pages, illus. (9) ===== Neurologist Wanted ========== Date : Sun, 18 Dec 1994 12:15:40 -0500 Sender : Neuroscience Information Forum : >From : Steve Norris Subject: Neurologist Wanted Florida Coastal Practice Seeks Neurologist A multispecialty practice which consists of 2 neurologists, 2 physiatrists, a neurosurgeon, and a neuropsychologist seeks a BE/BC neurologist. A large community hosptial is nearby and there is a shared call schedule. State of the art neurodiagnostics are locally available. Send response via email or snail mail to: Steven Norris, M.D. Peninsula Medical Associates 4110 Manatee Ave. West Bradenton, Florida 34205 TEL : 813-750-0602 E-mail: Steve52N.aol.com (Steve Norris) (10) ===== from Chicago Sun-Times ========== Column: CHECKUP Credit: Chicago Sun-Times wires 12/18/94 Here's a weekly roundup of health news you should know. Caregivers' burden: Grieving after a loved one has died is normal, but if you had to care for the person during a chronic or terminal illness, the grief could last longer than usual. A study sponsored by the National Institute of Mental Health found that about 30 percent of caregivers suffer from clinical depression or anxiety while their loved one is alive, and 25 percent of them still suffer symptoms four years after the death. By comparison, only 10 percent of bereaved relatives who had not been caregivers were depressed four years after the death. Researchers say that's a sign that people who are no longer acting as caregivers need special support. Alzheimer's link: It's reasonable to assume that degenerative neurological diseases such as Alzheimer's run in the family. Researchers say that amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease, Parkinson's disease (PD) and Alzheimer's (AD) appear in different members of the same family for more reason than bad luck. "There may be a shared genetic susceptibility to these three disorders," says Ruth Ottman, Ph.D., genetic epidemiologist at Columbia University. (11) ===== Guide to Emotional Support Resources ========== Date : Tue, 20 Dec 1994 07:45:42 -0500 (EST) >From : "Joanne R. Juhnke" Subject: Guide to Emotional Support Resources ANNOUNCING a new Internet publication: the Emotional Support Guide to Internet Resources for Physical Loss, Chronic Illness, and Bereavement. The Emotional Support Guide covers emotional support resources for people who are facing situations of bereavement, illnesses from Alzheimer's disease to cancer to fibromyalgia (among many others), and physical loss such as blindness or amputation. Friends, family and caregivers will find these resources useful as well. The Emotional Support Guide includes access information and descriptions for electronic discussion groups, directories to various non-Internet support groups in the United States, and documents in which people share their advice and experiences. The Emotional Support Guide is available in both HTML and ASCII versions. The HTML version of the guide can be found at the following URL: http://asa.ugl.lib.umich.edu/chdocs/support/emotion.html The ASCII version of the guide can be accessed from the Clearinghouse of Subject-Oriented Research Guides as follows: anonymous FTP: host: una.hh.lib.umich.edu path: /inetdirsstacks file: emotsupport:junpow gopher: host: gopher.lib.umich.edu menu selections: General Reference Resources/ Internet Guides and Resources/ Subject-Oriented Internet Resource Guides (Umich)/ All Guides/ Emotional Support... WWW: gopher://una.hh.lib.umich.edu/00/inetdirsstacks/emotsupport%3ajunpow ================================================= | Joanne Juhnke and Chris Powell | | School of Information and Library Studies | | University of Michigan | | E-mail: support-guide@umich.edu | ================================================= === end of als 160 ===