Date: Tue, 17 Jan 95 17:08:46 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#166 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#166, 17 January 1995) == == == == ------ 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 == == 450+ 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 .. Optimism 101 2 .. any advice? 3 .. re: letter to Dr. Hall 4 .. re: Ricky & ALS 5 .. Charlie Wedemeyer 6 .. bSOD & ALS 7 .. another WWW home page 8 .. Internet Guide for Communication Disorders and Sciences (1) ===== Optimism 101 ========== Date : Mon, 16 Jan 1995 18:41:35 -0500 >From : BWRAYNSTRM@aol.com Subject: Optimism 101 Crash course in The School of Hard Knocks Three years ago, I enrolled in The School of Hard Knocks when I received my diagnosis of sporadic, limb onset ALS at the age of forty-one. With great interest, I listened to and read any information about ALS causes and research. Every rumor would rekindle my smoldering hopes for a major breakthrough. I've since learned to be "cautiously optimistic". Five months ago, I subscribed to this digest. It's a fine resource and provides an important medium of exchange and interaction for most aspects of this disease. I thought that neurologists and researchers would contribute to the dialog. To my surprise, they participate very little. I have the impression that most avoid it. Now, when I find something new or exciting, I run it by ALS research neurologists at my clinic. Although they are extremely cautious and often hide their optimism, they are always available to answer any questions. When Neurontin created a flurry of excitement, they reminded me of how strong the placebo effect is on ALS sufferers. Patients have often shown or felt significant improvement but it never lasted (i.e., snake venom, TRH, branched chain amino acids). Researchers are testing many promising drugs. The highly specific experiments they perform in the lab uncover very minute but important information. Documentation, review, and approval processes are painfully slow, especially after the bureaucratic factors are added to the equation. Except for the discovery of the mutant gene in one form of familial ALS, no branch of western science has produced any clues to the cause of ALS or the mechanism for its progression. Around the world, research continues on many fronts. Several camps are working on different theories. Excitotoxicity, growth factors, the immune system, and mutant genes are major areas of interest and reveal valuable information. Speculation on our part is normal and to be expected. Believe me, I have a few theories of my own that I ran up the flagpole and no one saluted. Don't expect a "Big Bang" cure. Most likely, the solution will come from a series of breakthroughs each of which may provide only minor improvement. Over time, the average life expectancy will lengthen. For the best way to get the facts, I recommend that everyone establish a rapport with his/her ALS clinic. Don't be afraid to ask them about any hypothesis or theory you have. Discuss articles mentioned in this digest and any other publication. Be prepared to hear a skeptical response but, nevertheless, an educated response. Above all, learning patience, faith, and cautious optimism are crucial in The School of Hard Knocks. Respectfully submitted, David Wray Class of '92 P.S. I'd like to hear more from the ALS research community. The ALSA publication, Link, lists grant approvals for many experiments. Perhaps a neurologist could take the time to interpret abstracts for us or respond to theories posted by subscribers. Dr. Kenneth Fischbeck contributes the only expert response I've seen. (2) ===== any advice? ========== Date : Wed, 28 Dec 1994 11:42:44 -0500 (EST) >From: Neur0mancer I haven't written to this list in quite some time, but am now wondering if anyone can answer a few questions or give a little advice. At this point in my Mother's life she has had Amyotrophic Lateral Schlerosis for almost three years. This was a bulbar onset and her speech is completely gone at this point. Her right hand is still strong enough to write everything she needs to communicate, though this has become more frustrating as the disease has progressed. So, my first question is what computer programs that utilize a mouse or other pointing device and work with a sound card to generate speech are available? I'm not too worried about the actual set-up of the programs, as I build and service computers myself. What I need is a system that, once set up, is extremely easy to use. Any suggestions? Secondly, and more importantly, my Mother also recently had a trach operation so that her breathing would become easier. Previous to this she had hospice care at home, with three nurses, each in eight hour shifts. Suddenly, the people that run this program say they're understaffed and aren't sure that they can continue to take the case. The downside to this is that Medicaid pays all of my Mother's medical expenses and only two agencies take medicaid in my county, the other one won't take the case because of the trach, etc. In addition to being understaffed, the people my Mother was working with will not take cases in which a ventilator is involved, something that could happen in the future, but is not imminent at this time. Wow... long explanation... anyway, I was wondering if anyone else has run into all of this red tape with hospice care and ALS patients. The only alternative they say is a nursing home type setting.... This seems ridiculous to my family, ... She wants to be at home and feels she deserves at least that much, since the disease has continued to progress, despite the efforts of drugs like IGF 1 , Neurontin and all sorts of Vitamins and Minerals. What might be most helpful is feedback from people in the New York area... My mother lives 50 miles norts of NYC right now... perhaps someone can suggest some sort of Hospice Care that we have overlooked. Also any sort of legal advice might help with this, as well. As it stands, my Mother will be in the hospital for perhaps another week at most. Then, the outcome of where she will go is uncertain. Any help would be appreciated... Sorry for the long post... ----d scott long----- dsl1@keene.edu (3) ===== re: letter to Dr. Hall ========== Date : Mon, 16 Jan 1995 01:43:15 -0500 >From : DanB5974@aol.com To : JACKN74940@aol.com Cc : bro@huey.met.fsu.edu Subject: Jack Norton ltr to NIH, Dr. Hall >From your letter in ALS Digest #163, to Dr. Hall: "Dr. Mitsumoto.. and Dr. Brooks are developing a safety study for combination drug trials...." My friend Robert, who is on assisted breathing and is no longer able to swallow and hardly talk, has strong feelings about the safety aspect. (I partially agree.) He feels that he isn't too concerned about the safety aspects, since as in his case he doesn't have a future of health anyway. In fact, it will definitely go downhill. In fact, he would love to be the subject of non-scientific experimentation. (You have to understand where he's coming from. He despirately wants more life, just for a while, to communicate specific things to his kids who are with his ex-wife, outside of easy visiting distance, and she tells them there isn't any purpose in visiting him anyway.). How concerned are we about safety with this disease, and is it worth while just to learn something? I don't know. I feel that Robert has generally been way to venturesome about chemicals for his own good. But now... I very strongly agree with Robert that political attention is needed to help encourage more research. Another idea we've talked about is the need of institutions that specialize in ALS patients. Seems the Seattle greater area has more than it's per-capita share. Although many are cared for in home by family, some cannot be. To some degree, each institution has to figger out the specialized things about ALS patient care separately. Robert does have another problem: he's on state aid, which limits how much is paid for care, and there has been a continual problem finding facilities that would decide that the amount of cost for accepting him is worth the pay they would receive. In fact, it's really been a problem for him for months; his gardian has been looking and looking; several places looked promising then turned him down. (4) ===== re: Ricky & ALS ========== Date : Fri, 13 Jan 1995 06:11:41 -0500 (EST) >From : RICKY998@delphi.com Subject: Re: your post to L-HCAP Hi Faye- I am 46 at this time (birthday Aug 9). I. like your Mother am on Elavil. I told my Doctor about crying often and I must be very depressed. When she told me that what I was experincing was a part of ALS. That is when she put me on Elavil and went off of Valium. I knew Valium was a downer and thought it would be best to stop taking it and was right. I am the first person in my family to come down with ALS. Thank the good man above I have never married so I have no children. So.. there is no way I can pass it on. I would not wish what I was going thru on anyone. Having never ever thought about becoming handicapped one really doesn't think about it. Actually one doesn't know which way to turn. If it hadn't been for my brother I would still be looking for a handicapped apartment. He and a friend fo his carried my power wheelchiar downstairs ( I live in a Second floor condo I bought I year and half ago) because my brother wanted me to be there with my power chair in order to see which style of apartment would be best for me. And I only have to move right across the street from where I am living now. I do not know what I am injecting myself with other than I am part of a drug trial. Before I started injecting I di not know evne of I could do such a thing. Give myself a needle every morning while knowing that I would not ever get a flu shot because I hated needles. But when push came to shove and the Nurse (Who is the head of the drug trial) counted down to 1 and screamed push there I sat there with a needle in my stomach, shocked that I did it... and further more it was no big deal... it did not hurt. I enjoy comparing notes on the subject of ALS and I do hope that we continue comparing notes. Ricky998 (5) ===== Charlie Wedemeyer ========== THE DALLAS MORNING NEWS Credit: Compiled by Marcus Stewart Column: WORD AND DEED Date : 12/17/94 Message of Determination Charlie Wedemeyer was given one to three years to live in 1978, when doctors diagnosed him with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. The terminal disease gradually destroys the nervous system; Mr. Wedemeyer, a star football player for the Michigan State Spartans in the 1960s, has lost his ability to walk, talk or breathe on his own. But Mr. Wedemeyer refuses to give up. In 1985, with his wife, Lucy, reading his lips, he coached a Los Gatos high school football team to the sectional championships in California, and he now travels as a motivational speaker. Named 1992 Disabled American of the year by President Bush, Charlie and Lucy share his message that "life is always worth living." The Wedemeyers will appear at 9:15 and 10:45 a.m. Sunday at Reinhardt Bible Church, 10123 Garland Road. (6) ===== bSOD & ALS ========== BUSINESS WIRE Monday January 16, 1995 OXIS ANNOUNCES FDA ORPHAN DRUG DESIGNATION FOR DRUG THAT COULD SLOW THE PROGRESS OF LOU GEHRIG'S DISEASE; PRELIMINARY TESTS IN MONKEYS AND AN ALS PORTLAND, Ore.--(BUSINESS WIRE)--Jan. 16, 1995--OXIS International Inc. today announced that the United States Food and Drug Administration (FDA) has awarded Orphan Drug designation for the OXIS drug, orgotein (bovine superoxide dismutase or bSOD), for the treatment of familial (inherited) amyotrophic lateral sclerosis (ALS). Results from preliminary testing in one patient suggested possible slowing of neuromuscular deterioration caused by ALS, commonly known as "Lou Gehrig's Disease." < parts deleted > "Recent research has determined that a subgroup of familial ALS has a deficiency of superoxide dismutase activity," stated Dr. Ann Barker, president and CEO of OXIS International. "Now, with the FDA's Orphan Drug status, we can design clinical trials to further test the effectiveness of bSOD as an enzyme replacement therapy to counteract this deficiency." Presentations at a University of Chicago conference in September 1994 and a Motor Neuron Disease Association meeting in the Netherlands in November 1994 cited results of safety studies in monkeys, performed in collaboration with the National Cancer Institute, and a clinical study that showed minimal decline in muscle function in a familial ALS patient while he received daily doses of bSOD into his cerebrospinal fluid. The administration of bSOD was well tolerated by the monkeys and the patient in these studies. A report of these studies, which represent the world's first administration of orgotein into the ventricles of the brain, will appear in a forthcoming issue of the Journal of Neurological Sciences. < parts deleted > OXIS International (NASDAQ:OXIS) is a drug development and diagnostic company dedicated to the research and development of antioxidants and free radical scavengers to diagnose and treat diseases associated with reactive oxygen species. The company, headquartered in Portland, Ore., has research facilities in Mountain View, Calif., and near Paris. For additional information, contact the Investor Relations Department of OXIS International at 6040 N. Cutter Circle, Suite 317, Portland, Oregon; phone 503/283-3911; fax 503/283-4058. CONTACT: KVO Public Relations Will Anderson, 503/221-2351 (7) ===== another WWW home page ========== Date : Sun, 15 Jan 1995 15:42:36 GMT >From : Frank Norman Subject: Medical Research Council (UK) WWW Home Page A Medical Research Council WWW Home Page is now available: http://www.nimr.mrc.ac.uk/MRC The Medical Research Council (MRC) promotes the balanced development of medical and related biological research in the UK. The Council receives an annual Grant in aid from Parliament via the Office of Science and Technology. It also receives funds for or works with a number of government departments, industry and charities. It has close links with the Health Departments and the other Research Councils. The Home Page includes information about MRC Institutes and Units, Interdisciplinary Research Centres, and about other UK Research Councils. Hyperlinks are provided where available. Frank Norman Deputy Librarian National Institute for Medical Research The Ridgeway Mill Hill London NW7 1AA f.norman@nimr.mrc.ac.uk ------------------------------ (8) ===== Internet Guide for Communication Disorders and Sciences ========== Date : Fri, 13 Jan 1995 16:16:19 EST Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3707 ====================================================================== To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send electronic mail to Bill McGarry at: INTERNET: wtm@bunker.shel.isc-br.com Bill McGarry (Moderator) (203) 926-6187 ======================================================================= Subject: Internet Guide for Communication Disorders and Sciences >From : KUSTER@VAX1.Mankato.MSUS.EDU Version 3 of the Internet Guide, Net Connections for Communication Disorders and Sciences, is now available from the University of Michigan Clearinghouse. URL: gopher://una.hh.lib.umich.edu following the path /inetdirrsstacks/kuster. It contains many changes from version 2.2 - 24 listserv changes or additions, 5 new newsgroups, 4 new e-journals, 16 new gopher sites, 5 new telnet resources, and 53 new web sites. All together there are references to about 300 different resources on the Internet which may be of interest to professional and students in the fields of speech- language pathology, audiology, speech science, persons with communication disabilities or differences and their support persons. The fourth version, hopefully out in April, will concentrate on FTP. If anyone has additions, corrections or suggestions, I would appreciate hearing from you. Also, if anyone does not have access to gopher or is having trouble finding Net Connections, I would be happy to e-mail a copy to you directly. Judy Kuster@vax1.mankato.msus.edu === end of als 166 ===