Date: Fri, 24 Feb 95 01:28:31 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#176 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#176, 23 February 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 == == 500+ 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 .. Zygo Lightwriter questions 2 .. Article on approval/disapproval of vital drugs 3 .. BOOK: Health Online (seeking your input) 4 .. ALS info for the "layman" 5 .. Primary Lateral Sclerosis 6 .. ALS 7 .. Yahoo 8 .. Words+, Inc. 9 .. lead poisoning 10 . periodicals that are required reading 11 . Resources for ALS Healthcare Providers 12 . more from McGarry's L-HCAP List 13 . Physicians Online 14 . Muscular Dystrophy Ireland WWW 15 . ALS Association 1995 Volunteer Leadership Conference (1) ===== Zygo Lightwriter questions ========== Date : Wed, 22 Feb 95 21:01:51 PST >From : LeeAnne_McAfee@reynolds.k12.or.us (LeeAnne McAfee) Subject: Zygo Lightwriter questions My Mom has ALS. My Dad recently ordered a Zygo Lightwriter as her speech is becoming so affected, she will soon not be able to verbally communicate. The Lightwriter would enable her to type messages or with one keystroke, call upon a previously saved phrase. The message would than be displayed or spoken for her with a voice synthesizer. About 2 weeks after ordering, my Dad received some information that the FDA had banned production and repairs of the Lightwriter. The Lightwriter is therefore not available and even if the ban is lifted, the delay may be enough that the device is of no use to her by the time we can get. My quesitons are: Why did the FDA ban the Lightwriter? Why do they even have the power to ban such a product? It is not necessarily medical in nature, simply an aide to the disabled. There are even some toys that operate in a similar manner! Also, is there a product out there that is comparable in terms of cost, ease of use, function and where can we get it? Thanks for your help. LeeAnne (2) ===== Article on approval/disapproval of vital drugs ========== Date : Wed, 22 Feb 1995 08:01:50 -0400 (EDT) >From : CARROLL@wmich.edu Subject: Article on approval/disapproval of vital drugs There is a good article on the FDA's approval process for drugs in the current (March 1995) issue of the SCIENTIFIC AMERICAN. One of the co- authors is FDA Commissioner David Kessler. The citation for the article is: Kessler, David A. and Feiden, Karyn L. "Faster Evaluation of Vital Drugs." SCIENTIFIC AMERICAN, v.272, no.3 (March 1995), pp.48-54. Hardy Carroll Kalamazoo, MI (3) ===== BOOK: Health Online (seeking your input) ========== Date : Mon, 20 Feb 1995 19:01:55 -0500 >From : DrTomHI@aol.com Subject: BB Interview for *Online Health* Dear Fellow-Members of the ALS List, I'm writing to ask your help. My book-in-progress, *Health Online,* will be published later this year. I'd like to include a section about Bob Broedel and the ALS list (which I personally consider to be one of the best of its kind in all the self-help neighborhoods of cyberspace). I'd like to ask your help in writing this section: I'd like to get across -from your point of view as a list member- what kind of a guy this Bob Broedel is and exactly how his list has (1) helped to create and (2) has been of service to the worldwide ALS community. Personal experiences and anecdotes would be especially welcome. I'd be delighted to hear from people with ALS, their families and friends, health professionals who care for ALS patients, ALS researchers, and any other list members. Please e-mail me directly if you wish. Unless you request otherwise, I will be sending Bob copies of all messages I receive Thanks & warm wishes, Tom Ferguson =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= "Who then can so softly bind up the wound of another as he who has felt the same wound himself?" -Thomas Jefferson =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= "The time has come for a major conceptual shift... from viewing lay people as consumers of health care to seeing them as they really are: its primary providers." -Lowell Levin & Ellen Idler =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= Tom Ferguson, M.D. Research Fellow, Center for Clinical Computing, Harvard University School of Medicine Medical Editor, The Millennium Whole Earth Catalog President, Self-Care Productions =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= Current book-in-progress: HEALTH ONLINE How to Go Online to Find Health Information, Support Forums, and Self-Help Communities in Cyberspace (Addison-Wesley, 1995) =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= Consulting, Speaking, Conference-Organizing, Research, and Writing on Empowerment-Based Wellness, Online Self-Help, and Consumer Health Informatics =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= 3805 Stevenson Avenue * Austin, Texas 78703 USA voice: 512-472-1333 fax: 512-472-1345 e-mail: DrTomHI@aol.com =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= Send e-mail for a listing of current professional meetings on consumer health informatics and online self-help. =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= (4) ===== ALS info for the "layman" ========== Date: Thu, 23 Feb 1995 16:06:58 -0700 >From: plato2@PrimeNet.Com (Andrew White) Subject: ALS I am just curious as to whether or not you have access to some "layman" information on ALS. I am ignorant on the subject, and as an aquaintance has been diagnosed, I feel I should at least be better educated. I would appreciate any information at all. Thank you. ===== = There will be other suggestions ... here is mine. bro = AMYOTROPHIC LATERAL SCLEROSIS: A Comprehensive Guide to Management = By H. Mitsumoto, MD and F.H. Norris Jr., MD = $44.00 (postpaid), paperback, 1994, 342 pages = Demos Publications; 386 Park Avenue South, Suite 201; New York NY 10016 = TEL 212-683-0072 ===== (5) ===== Primary Lateral Sclerosis ========== Date : Fri, 17 Feb 1995 21:44:46 -0500 >From : PWHITEMURP@aol.com Subject: PLS I have been a recipient of the ALS newsletter since my cousin was diagnosed with ALS. She went today for a second opinion to a noted neurologist on the East Coast and was told he was uncertain that she had ALS and that she might have Primary Lateral Sclerosis. She will be having more tests, but in the meantime if anyone out there has any information on PLS, we would be most grateful to hear it. We think it is good news, but still would like to know more. Sincerely, Pat Murphy pwhitemurp@aol.com (6) ===== ALS ========== Listname: "Muscular Dystrophy - Patients, Family, & Friends" Date : Sun, 19 Feb 1995 01:01:16 -0500 >From : Mybean@aol.com To : md-list@data.basix.com Subject : ALS I would like to correspond with any family member of, or any individual with ALS. My brother has this disease and he also is online. We both live in Las Vegas. (7) ===== Yahoo ========== Date : Fri, 17 Feb 1995 19:44:02 -0500 To : CANCER-L@WVNVM.WVNET.EDU, bro@huey.met.fsu.edu >From : atsea@shore.net (David Feingold) Subject: Yahoo No longer just a statement of enthusiasm, "Yahoo" is a powerful home page at Stanford that provides easy access to a number of medical subjects as well as a bunch of other interesting topics. Under "Cancer" , for instance, it lists 16 institutes where one might continue searching. Neurology is set up in the same way. ====================================== The URL is "http://akebono.stanford.edu/yahoo" and then just go down the list or add "/Medicine/Cancer/Institutes" if you want to go directly to the list of institutions. Best Wishes, David (8) ===== Words+ Inc. ========== Here is more current information about Words+, Inc. ===== = Words+, Inc. = 40015 Sierra Highway, Building B-145 = Palmdale CA 93550 = TEL 800-869-8521/805-266-8500 = FAX 805-266-8969 ===== (9) ===== lead poisoning ========== >From : Loraine.Hodges@um.cc.umich.edu Date : Thu, 26 Jan 95 11:44:48 EST Subject: dropping out for now I have subscribed to you via the e-mail at the University of Michigan. I graduated with a Master's in Nursing in December and I will not be able to get messages for a while. I plan to get a modem & internet for my home computer soon, at which time I will re-join. By the way..my cousin (my reason for joining this network) was dx'd with ALS in the fall .. his followup EMG's have not progressed at all since September .. which leads his MD to want to test him for lead poisoning!! I assumed that would have been ruled out before giving a definite dx, but it wasn't!! Perhaps readers should know that ALS and lead poisoning produce similar abnormalities in the EMG, if they didn't know already. Thanks Lori Hodges (313)561-6957 26411 Baldwin, Dearborn Heights,MI 48127 (10) ===== periodicals that are required reading ========== ===== QUEST is published 3 times a year by the Muscular Dystrophu Association, Inc. (3300 East Sunrise Drive; Tucson AZ 85718-3208; TEL 602-529-2000). It is available on CompuServe by using GO MDA. The current issue includes an article about the MDA Forum on Compuserve. And that article has a photo of one of their SysOps, Barry Goldberg, who is a frequent (and we *all* thank you Barry) contributor to the ALS Digest. ===== LINK is the official publication of the ALS Association (21021 Ventura Boulevard, Suite 321; Woodland Hills CA 91364; TEL 818-340-7500; FAX 818-340-2060). It is published bi-monthly. The current issue includes information about ALS research, an update on ALS clinical trials, an article about US government funding, calls for patient participation, letters to the editor, resource listings, etc. (11) ===== Resources for ALS Healthcare Providers ========== The book RESOURCES FOR HEALTHCARE PROVIDERS was compiled by the ALS Society of Canada. Though intended for healthcare professionals, it is easily understood by anyone. The price is $25.00. It is available from: ==== = ALS Society of Canada = 6 Adelaide Street, E., Suite 220 = Toronto, Ontario M5C 1H6 CANADA = TEL 416-362-0269 FAX 416-362-0414 ==== (12) ===== more from McGarry's L-HCAP List ========== Date : Fri, 17 Feb 1995 16:01:52 EST Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3739 ======================================================================= To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send electronic mail to Bill McGarry at the following address: INTERNET: wtm@bunker.shel.isc-br.com Bill McGarry (Moderator) (203) 926-6187 < many parts deleted > PART (A) ---------- Subject : Re: Consumer guide to assistive devices >From : seiler@sun5.iaee.tuwien.ac.at (Franz Peter Seiler) Organization: Vienna University of Technology, Austria ACKSTOL@ac.dal.ca wrote: > Does anyone know of a guide or book about assistive devices from the > perspective of the consumer (not the provider or the prescriber)? I > would appreciate any suggestions. Thanks! You could try the Trace Resource Center at http://trace.wisc.edu/ Greetings, Franz P. Seiler PART (B) ---------- Subject: Latest Do-It Internet Resource guide Available >From : deamar@u.washington.edu (Dean Martineau) the most recent version of the Do-It Internet Resource guide is now available on our gopher server at hawking.u.washington.edu. It contains over 40 additions and corrections to the previous version. Maintenance of this guide is funded in large part by the National Science Foundation. For those not familiar with it, the guide is a concise but quite complete list of disability-related resources available on the Internet. If you would like a copy emailed to you, feel free to write to me at the address below. Dean Martineau deamar@u.washington.edu (13) ===== Physicians Online ========== Date : Wed, 22 Feb 1995 16:03:33 EST Sender : "Clinical WANS: Design & Usage" : >From : "Patrick A. Tiffany" Subject: Re: Help finding Physicians Online Neil wrote: > > I wonder if anyone who uses Physicians Online can tell me about how to > reach them. They were written up in the latest Wired magazine and I have > a number (1-800-332-0009), but only get a busy signal. > Is it the right number, and do they have an Internet or WWW address? > What services do they offer? > Neil Levitsky Toronto, Canada > Sure. The number you have is correct. Their snail address and email address are as follows: ==== = Physicians' Online = 560 White Plains Road = Tarrytown, NY 10591 = E-mail: members@po.com ==== Services include online access to MEDLINE, AIDSLINE, AIDSDRUGS/AIDSTRIALS, QMR, Physicians GenRx, Drug Interactions, Prescribing Decision Support Module, and more. Their informational flyer accompanying the materials I received says that they will be expanding their services in the coming months to include full-text journals and textbooks, a personalized clipping service, electronic mail and interactive CME programs. POL offers its basic services free of charge to all physicians. They will be happy to send you a member packet, which includes the software necessary to access the service. (14) ===== Muscular Dystrophy Ireland WWW ========== Listname: "Muscular Dystrophy - Patients, Family, & Friends" Date : Tue, 21 Feb 1995 20:43:44 GMT To : md-list@data.basix.com >From : coreilly@iol.ie (Conor O'Reilly) Subject : Muscular Dystrophy Ireland WWW Just to make an announce that Muscular Dystrophy Ireland now has a WWW Home Page. At the moment there isn't much information there (but there is a reference to MD-List!), but more will be there when I get it. Here's the URL: http://www.iol.ie/~coreilly/ It's a short one! Seeya, Conor Conor O'Reilly WWW:- http://iol.ie/~coreilly/ email: coreilly@iol.ie 93907761@dcu.ie 'I lost an idol and a friend.' l2coreil@compapp.dcu.ie - Rubens Barrichello (15) ===== ALS Association 1995 Volunteer Leadership Conference ========== "At The Gateway: Many Paths, One Journey" This is the slogan for the 1995 meeting of ALS Association's chapter board members, committee chairpersons, administrative staff, patient service coordinators, support group leaders, the ALSA Center team and other volunteers. The meeting will be held at the Regal Riverfront Hotel in St. Louis. The date will be April 20-23, 1995. Some of the sessions will be "Drug companies report on ALS clinical trials", "ALS -- An updated profile of ALS; research status; the generic clinical trial", and more. For more information contact the ALS Association (see above sections). ===== = If all goes well, I will be at this conference. I will be taking my = IBM PC XT (its not big enough to join Prodigy) and a modem so I can = remain on-line. If anyone knows where I can tap into an Internet node = there in St Louis ... please let me know how it is done. rgds,bro ===== === end of als 176 ===