=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#69, 22 November 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 == == 170+ 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) ===== ALS-INTRO - Tom Maloney ========== Date : 18 Nov 93 15:43:33 EST >From : BRUCE BECKERT <71605.155@CompuServe.COM> Subject: ALS 65 ALS-ON-LINE I am 39. I was diagnosed in February, 1991. I have a lovely wife and a 10 year old son. I have almost no use of my hands. I use a wheelchair all the time and my speech is very slurred. I am very active on the Prodigy ALS board (part of the Medical Support BB). I am in a hospice program. My typing is done by my wife and 2 wonderful volunteers, one of whose Compuserve numbers I am now using. After I was diagnosed, I returned to the Catholic Church after a long absence. God has helped me deal with this disease and has allowed my life to remain interesting and meaningful. I have met many wonderful people since I got sick. (2) ===== re: ALS Drug Studies ========== X-Mailer: America Online Mailer Sender : "jackn74940" Date : Sat, 20 Nov 93 00:02:02 EST Subject : ALS drug studies Can I get an update from anyone on drug trials - CNTF,BDNF,IGF-1 or Riluzole? How are things going and how long have you been on it? I am currently on 2nd week of Synergen trial. No side effects, possibly placebo.. Jack Norton (3) ===== re: Letter urging Prodding for new drugs ========== Date : Fri, 19 Nov 1993 08:02:35 -0500 (EST) >From : Jim Davis Subject: Re: ALS 68 ALS-ON-LINE Letter urging Prodding for new drugs As a clinical researcher and physician, I must urge caution in demanding new drugs for ALS patients. There is an excellent rationale for the FDA program of clincial research before a new drug is released. Most of the new drugs now in testing for ALS are examples of the problems facing victims of life-threatening diseases. When such a patient takes a new EXPERIMENTAL medicine they are courageously volunteering to be "guinea pgs", experimental subjects. No one knows whether these drugs will be good or BAD for the patients who first volunteer to take them. There are many examples of terrible, even fatal, complications that were unsuspected when experimental drugs are first used in humans. Taking an experimental drug is a risk. It could shorten life, it could cause damage to organs such as liver, lungs, or brain. Just because experimental drugs may be of benefit does not mean that they are of benefit. The purpose of clinical trials is to define the toxicity and benefit of new agents. These trials must be done in well-defined groups of patients so that comparisons between drugs and placebos are valid. There are other considerations that enter into designing and testing new drugs including proper monitoring of patients so that toxic side-effects can be detected. Please use moderation in fighting a difficult disease like ALS. Don't pressure congressmen for drugs that have not been tested. It will only expose faimlies already struggling with disease with the possibility of even more grief. Remember that it takes courage to volunteer as an experimental subject in a new trial. Furthermore, when a drug is released, we should all have a good idea of its side-effects and complications. the kind of idea that only comes from careful clinical trials. James N. Davis Neurology S.U.N.Y. at Stony Brook HSC T12 020 Stony Brook, N.Y. 11794-8121 (516) 444-7878 FAX 444-1474 (4) ===== eating disorders ========== Date : Thu, 18 Nov 1993 16:09:19 GMT Sender : Hospital Computer Network Discussion Group and Data Base : >From : Elizabeth Curry Subject: EATING DISORDER I am barging in for a second. I was wondering if any of you would be interested in an eating disorder support group, if it applies. I thought that it might interest those in the medical field to hear some personal stories and experiences around eating disorders, so one can learn more about the psychology of it. Also, I know that those with the eating disorders would really appreciate any information that you could spare. How do I know? Cause I would and I have/had an eating disorder for five years. So please tell me if this is a good idea or not. All input is greatly appreciated. Thanx Beth ecurry@sun.cis.smu.edu (5) ===== PaparChase information ========== Date : Tue, 26 Oct 1993 08:58:24 EDT Sender : Medical Libraries Discussion List : >From : Ruth Riley Subject: PaperChase Internet Info If you want to contact the PaperChase folks over the Internet, send e-mail to their dynamite Director of User Services, Rick Lawson. His e-mail address is lawson@ccc.bih.harvard.edu Or call 1-800-722-2075 and speak with him in person! Ruth Riley, Taubman Medical Library, Univ of Michigan rriley@umich.edu (6) ===== a new nursing gopher ========== Date : Sat, 6 Nov 1993 15:23:19 GMT Sender : Medical Libraries Discussion List >From : Peter Scott Subject: Nursing gopher at University of Tennessee There is a new nursing gopher at the University of Tennessee. Here is the bookmark and opening menu: Name=NIGHTINGALE Type=1 Port=70 Path= Host=nightingale.con.utk.edu 1. About NIGHTINGALE (Univ. of Tenn. nursing gopher). 2. Research/ 3. Practice/ 4. Education/ 5. Professional nursing communications/ 6. Publications/ 7. Other nursing resources/ 8. Other gophers and information servers/ 9. Sigma Theta Tau 10. Search all menus on NIGHTINGALE == end of als 69 ==