=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#59, 06 October 1993) == == == == ----- amyotrophic lateral sclerosis (ALS) == == ----- motor neurone disease (MND) == == ----- Lou Gehrig'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. Currently there are == == 130+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == == == All interested people may "broadcast" messages to == == ALS Digest subscribers by sending to: == == als@huey.met.fsu.edu == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32310 USA == =============================================================== == Back issues are available via e-mail from: == == LISTSERV@mailer.fsu.edu == == send an e-mail message that says INDEX ALS == == Also available via anonymous FTP at mailer.fsu.edu == == directory ftp/pub/als == =============================================================== (1) ===== we are not alone (als-on-line) ========== There is an e-mail list about muscular dystrophy that includes info about ALS. For more info send to: rharwood@Data.Basix.COM Pridigy subscribers can jump to "Medical Support", choose "Neurological", then "ALS", to reach the ALS Support Group. The ALS Association is active with that on-line group. Ed Madara of the American Self-Help Clearinghouse has asked to be informed about self-help groups that are on-line. Ed can be reached at 70275.1003@compuserve.com Tom Ferguson MD is working on the medical section of the next edition of the Whole Earth Catalog. He asks to be kept informed about related on-line efforts also. Dr. Ferguson is at: DrTomHI@AOL.COM (2) ===== Editorial ========== One way to make this network useful is for people to introduce themselves so others know of their interests, background, needs, experiences, expectations of the net, etc. Future issues of ALS DIGEST will include an introduction section. All subscribers are asked (not required) to send a brief note about themselves that is to be published in future issues. Please send to: bro@huey.met.fsu.edu and mark the subject line with ALS-INTRO. (3) ===== building the ALS e-mail network ========== (a)----- >From : billb67399@aol.com Date : Tue, 21 Sep 93 23:16:28 EDT Subject: ALS Interest Group I am a member of the ALS Association in Mass. and am interested in accessing the ALS Interest Group on the Internet. I'm particularly interested in conversing to patients who are in clinical trials of CNTF and Riluzole. My father has ALS and unfortunately wasn't accepted into either study, and we are very interested to hear how people in these studies are doing. Debra Bulkeley (b)----- Return-Path: Date : Tue, 05 Oct 1993 06:03:54 +1000 >From : /R=ECC/R=AM/U=CSLIB_ASPIN/FFN=CSLIB_ASPIN/@mr.tased.edu.au Subject: Info request : ALS Interest Group May I have more information and/or subscribe to the ALS Interest Group. My father had ALS (or as it is known here - Motor Neuron Disease). Family members are part of the local support group for Motor Neuron Sufferers and would appreciate any news, discussions etc. Regards, Jan Aspinall, AUSTRALIA (c)----- Date : Fri, 17 Sep 93 10:55:38 ARG >From : ela@anmat.sld.ar (Lista de Redistribucion del ANMAT) Subject: Subscription Hi, Mr Broedel I would like to susbcribe to ALS, under this address ela@anmat.sld.ar This will act as a redistribution list for Argentina, ANMAT is the National Adminstration of Food & Drugs, something like the FDA we have 500 users of the system, between Hospital, Universities, etc My name is Marcela Giussani, and I will act as a postmaster here thanks a lot. Marcela Giussani MD giussani@anmat.sld.ar (4) ===== RE: CFC's & ALS ========== Date : Tue, 28 Sep 93 12:39:15 MDT >From : "G. Haverland" Subject: unsubscribe & freon I guess I need to unsubscribe. I am being layed off on October 15. ID is GHAVERLA@vm.ucs.ualberta.ca With respect to possible use of CFC's in treating ALS. I thought I would wait a while to see if someone else was going to respond, but since this doesn't seem to be happening, here is my 0.25$ worth. Chloro-fluoro-carbon compounds are very stable (read unreactive) under normal conditions. The reason they have an effect on the ozone content of the upper atmosphere is because of the much higher flux of ultraviolet light up there. A CFC molecule absorbs an ultraviolet photon (which has an energy higher than 2.7 eV) and it either becomes excited, or it ionises. Since the energy excess (UV photon energy minus bond energy) is not large, excitation is more likely. One of the paths for molecular de-exciataion is the formation of free radicals. In the case of CFC's, some of the free radicals are reacting with ozone, and causing it to decompose. From what I remember of the chemistry, the multi-stage decomposition process uses some CFC generated free radicals as catalytic agents. So, in my humble opinion, inhaling CFC's is not going to help much, unless the patient wants to bathe his lungs in "high" energy ultraviolet light at the same time. This may generate the appropriate changes to the CFC's, which may help them treat symptoms of ALS, but the resulting "sunburn" (erythema) of the lungs will probably cause lung function to fail. And now for a disclaimer. I am not an atmospheric chemist, nor an expert on CFC's, nor an expert on radiation chemistry. I have worked with radiation for 6 years, at a nuclear reactor. The radiation I am used to work with is much more energetic than ultraviolet, or even x-rays. Gordon Haverland formerly University of Alberta SLOWPOKE nuclear reactor facility (5) ===== news from England ========== RTw 10/04 1204 BRITISH AUTHOR CALLS FOR FUNDING FOR DISABLED LONDON, Oct 4 (Reuter) - Best-selling British author Professor Stephen Hawking unveiled the lastest communication technology for disabled people on Monday and urged the government to make it freely available. Hawking, a Cambridge University mathematician and the author of "A Brief History of Time" who suffers from motor neurone disease, said modern technology had helped thousands of people like himself to communicate. "The fact that you are listening to me now shows what technology can do," he said using a speech synthesizer at the opening of a technology exhibit at the Science Museum in London. "There are no funding provisions (for the equipment). I hope you will campaign for the funding to be provided on the NHS (National Health Service)," he added. His condition, also known as Lou Gehrig's disease after the American baseball player who suffered from it, is a rare wasting condition of the nervous system. "Modern technology can give a voice to people in my position who have a lot to say," he added. REUTER (6) ===== ALS-related, from another list ========== Date : Fri, 17 Sep 1993 21:45:50 EDT Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3323 --------------------------------------------------------------- To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send electronic mail to Bill McGarry at any of the following addresses: UUCP: uunet!bunker!wtm INTERNET: wtm@bunker.afd.olivetti.com BITNET: l-hcap@ndsuvm1.bitnet Fidonet: The Handicap News BBS (141/420) 1-203-926-6168 (300 - 14,400 baud, 24 hours) National VideoText Network (NVN): BillSysop Compuserve: 73170,1064 --------------------------------------------------------------- Subject : Re: Input Devices (handsoff) ? >From : jromich1@cc.swarthmore.edu (Jennie Romich) Organization: Swarthmore College In article <30649@handicap.news>, gibbon@bu.edu (Peter Kahn) wrote: > > Hello all. My father has als and is currently quadrapolegic. now > he will probably loose the ability to talk sooner or later and I > was wondering if anyone knew of any good input devices that did > not require the use of hands or voice to enter data into the > computer, and while I on that > 2. any good computer recommendations > 3. any voice software/hardware suggestions > Hello Peter, Stan T, and others interested in computer access systems, There is an powerful alternative to the $25,000 experimental eye movement system. The Prentke Romich Company (PRC), a leader in the augmentative and alternative communication field, produces interface devices for Apples (incl. Macs), IBMs, and compatables. A variety of switch possibilites--blow / suck, muscle twitch, etc--can enter data and function as a mouse. I believe the most common interface, Headmaster, retails for around $1,000. Full communications systems utilizing Minspeak tm, an icon-based method ofsemantic compaction, retail for under $5,000. These systems function primarily as synthesized speech communication devices, as well as offering computer access and environmental control options. PRC can be reached at 1-800-262-1984 in the US. For computer access questions, speak with Don Spaeth or Mary Bing. For communication aid information, one of PRC's 40 regional consultants can provide consultation. I hope this is helpful. Jennie jromich1@swarthmore.cc.edu (7) ===== European trials of Myotrophin ========== RTf 10/05 0826 Cephalonstarts European Myotrophin trials WEST CHESTER, Pa., company said the Phase II/III European protocol is consistent with an ongoing U.S. study and involves a three-month base line evaluation followed by a nine month dosing regimen. It said it plans to enroll about 150 patients in Britain, France, Italy, Belgium, Germany and the Netherlands. REUTER (8) ===== re: homeopathy and ALS ========== Date : Tue, 1 Jun 93 02:41:02 PDT >From : wrussell@peg.apc.org Subject: Re: amyotrophic lateral sclerosis As I am sure you are aware, ALS progresses to death in relatively quick time (2 - 6 years). This is to not to say that Homoeopathy is of no help to you with this problem: it can be. I have not treated a case of ALS so I am not able to make any statements of experience specifically relating to this disorder; however I would have every faith that Homoeopathic medicine would have a significant impact in its treatment. Constitutional Homoeopathic treatment would be the primary approach, as this will strengthen the patient and help them cope with the disease. This is not the only angle to approach treatment, but it must be the mainstay. Homoeopathic Organotherapy may be of considerable help here (without knowing the patient, the stage of development of the disease, etc. it is hard to give definitive advice). Along with any Homoeopathic treatment there must be nutritional advice and perhaps orthomolecular supplementation as the body will need the materials with which to rebuild. Having said all this, I must say that your chances of cure must be extremely slim - perhaps negligible - but the patient will move through the path of the disease with greater ease if Homoeopathy is used during the progression of the disease. I sincerely hope that you find what you seek, my friend; if I can be of any help to you, please do not hesitate to contact me. Regards, Les. (9) ===== new list ========== Date : Sat, 2 Oct 93 23:40:14 EDT >From : jnorris@porpoise.oise.on.ca (Judy Norris) Subject: New Nursing List You are invited to subscribe to: NURSENET on LISTSERV@VM.UTCC.UTORONTO.CA - A Global Forum for Nursing Issues NURSENET is an open, unmoderated, global electronic conference for discourse about diverse nursing issues in the areas of nursing administration, nursing education, nursing practice, and nursing research. While unmoderated, we hope that subscribers will volunteer to introduce and host topics in areas of their interest and expertise. We can use this space to make announcements, share ideas, papers, bibliographies, resources, to take polls, review books, ask for opinions, and to create community. When you subscribe, you will receive The NURSENET Guide which contains useful commands and information. To subscribe, send the following command in the BODY of a mail message to: LISTSERV@VM.UTCC.UTORONTO.CA SUB NURSENET yourfirstname yourlastname To correspond with the list manager, send mail to: Judy Norris (jnorris@oise.on.ca) (10) ===== searching the Internet ========== Date : Thu, 16 Sep 1993 21:39:39 +0200 Sender : Medical Libraries Discussion List : >From : clmgar01@UCTVAX.UCT.AC.ZA Organization: University of Cape Town Subject : ** Motor Neuron Disease ** I'm looking for info on MND (Motor Neuron Disease). Anyone got any ideas of where I can look on the INTERNET ? Please reply directly to me. Thanks. == end of als 59 ==