Date: Mon, 8 May 95 02:19:53 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD190 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#190, 07 May 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == 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 == == 680+ 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: Boston Clobe article ... 2 .. Talking Device 3 .. re: testosterone 4 .. questions 5 .. Ventilator and feeding tube 6 .. FWD: Ask the Experts 7 .. Re: Computer adaptations 8 .. 2 questions (from Italy) 9 .. use of WWW by handicapped 10 . EAP or Calcium Calamine Phosphate in Europe? 11 . ATKINSON ALS RECOVERY STUDY 12 . Spinal Muscular Atrophy 13 . Wanted - Intelligent Perspective on Trend 14 . query: on-line neurological support groups 15 . International numbers for Rhone-Poulenc Rorer (1) ===== re: Boston Globe article ... ========== Date : 4 May 1995 14:08:22 -0400 >From : Tracy Brown O/o Subject: re: Boston Globe article ... An article in today's Globe mentions: "In the current issue of the journal Nature, scientists from McGill Univ. in Montreal report that an abnormal accumulation of proteins inside brain cells seems to create a traffic jam, impeding the flow of energy-making molecules through the nerve cells so that brain cells starve and die. "The discovery of drugs that reduce the production of the obstructing proteins - called neurofilaments - might slow the devastating course of ALS, the researchers wrote." I'm sure the original article has much more depth to it. Regards, Tracy J. Brown (2) ===== Talking Device ========== Date : Sun, 7 May 1995 18:00:13 -0400 >From : OAKPSY@aol.com Subject: Talking Device Does anyone have a talking device for someone with ALS that cannot talk? My mother has ALS-Bulbar Pulsey that affects her speech. I would like to buy such a machine for her. Thank You, Duane Oaks, Oaksd@aol.com (3) ===== re: testosterone ========== Date : 30 Apr 95 21:46:20 EDT >From : "Wayne S. Phillips" <70303.173@compuserve.com> Subject: re: testosterone Joe Snyder mentioned testosterone testing at Ohio State. Does anyone have the email address of Dr. Mendell or others at Ohio State looking into ALS and steroid hormones? This is my pet area of interest. I "tried" testosterone: 300 mg. IM bolus injection every 3 weeks for 3 months. It didn't halt my illness, probably didn't slow it either. Objective muscle strength measurements continued to decline. Wayne S. Phillips ==== = Ohio State University This ALS trial FOR MEN ONLY employs the = Neuromuscular Disease Center manipulation of androgen hormones. For = 389 McCampbell Hall further information, please contact Karen = 1581 Dodd Drive Downing at 614-292-1234. = Columbus OH 43210-1205 = Jerry R. Mendell, M.D. = = For current information about clinical trials, please contact the ALS = Association; 21021 Ventura Boulevard, Suite 321; Woodland Hills CA 91364. = TEL 818-340-7500. For on-going information about ALS, read their newsletter = LINK. rgds,bro ==== (4) ===== questions ========== Date : Fri, 5 May 1995 16:40:25 -0400 >From : BooneGolf@aol.com Subject: ALS Your Email address was given to me by ALSA. My husband has been diagnosed with ALS, but an A-typical, slower progressing form specifically called Benign Focal Amyotrophy or Adult Spinal Muscular Atrophy. It began with a weakness in one hand, has progressed to the other hand, and now one leg has begun to show signs of weakness. We live in Southern California. We've seen Dr. Theodore Munsat at Tufts in Boston, and more recently we've seen Dr. Michael Graves at UCLA (about a year ago). I have recently read about something called Multifocal Motor Neuropathy, which sounds very much like my husband's condition. Do you know anything about this? Do you know of any ALS support groups in Southern California? Would appreciate any info. Thanks Patti, Email address is BooneGolf@aol.com (5) ===== Ventilator and feeding tube ========== Date : Mon, 1 May 1995 14:07:33 -0700 (PDT) >From : Leigh Redding Subject: Ventilator and feeding tube To : jacquie@teleport.com Jacquie, In response to your letter in the ALS Digest, my husband Leigh is using both the portable ventilator and the feeding tube. He has been on the ventilator for a little over a year now. We can still be mobile, going to the store on occasion, doctor offices, friends houses and even go out of down to visit his daughters. Of course it takes a little planning and packing up, but it is worth it. His daughter and I tease each other about who does more preparation for an outing, me or her with twin babies. Being on the vent has enabled Leigh to see and enjoy our first three grandchildren, all of which were born after going on the vent. The feeding tube came towards the end of 1994. He chose to have it put in his neck. The care of it is very simple. He still eats when he feels up to it, and if he isn't, I simply feed him by the tube. I give him all of his medication via tube, also it helps to insure that he gets plenty of fluids. This is a horrible disease for everyone involved, but I am very thankful that Leigh made these decisions. He has given us so much that we would have missed. The decisions are not easy to make. I hope this will help in some way. I'm sure you still have a lot you want to share with your grandfather, and he no doubt has things to share with you and other loved ones. If you have any questions that I might be able to answer, please feel free to contact me. I am my husbands primary caregiver, so I have some in depth experience. Sincerely, Shawn Redding (6) ===== FWD: Ask the Experts ========== Date : Mon, 1 May 1995 15:42:11 -0700 >From : skygoetze@aol.com (Sandy Goetze) Subject: Fwd: ALS-ALERT-ASK THE EXPERTS Has there been any research or is there any information on how adrenalin affects ALS? The reason I ask is my husband, Rick has ALS and feels that when he is stimulating his adrenals he doesn't experience the weakness in his limbs as much. If anybody has info, please respond. Also, if any ALS drugs are released in Switzerland, Canada or elsewhere before the time-consuming process of the FDA in the U.S., will ALS patients be notified? I'm sure I am not alone in being prepared to travel outside of the U.S. if any such treatment is released. Thank You, Sandy (7) ===== Re: Computer adaptations ========== Date : Fri, 21 Apr 1995 13:25:54 -0400 >From : CAusten@aol.com Subject: Re: Computer adaptations. Does anyone have any information about computer hardware that can be adapted for ALS patients? I have read about a program that follows eye movement and would like additional information. Thanks so much, it would be a great help. Christine Austen. (8) ===== 2 questions (from Italy) ========== Date : Mon, 01 May 1995 19:02:17 -0400 (EDT) >From : FURSINI@delphi.com Subject: Re: ALSD189 ALS-ON-LINE My name is Vittorio Ursini. I have 2 questions: My father is effected by bulbar ALS. He has been under treatment for 3 months in Italy, now doctors want my father to join a new treatment that seems to give good results, the name of the drug is in Italian IPOSFERONE. I'd like to know if anybody knows something about it. I will be living the US in 2 weeks to go back to Italy. I would like to be in touch with the ALS Digest or at least be able to read it. I'd like to know if it is possible to recieve floppys with ALS digest downloaded, if it is please let me know. PLEASE SEND MY FUTURE MAIL TO "RTAGLIAV@ACS.BU.EDU." (9) ===== use of WWW by handicapped ========== >From : matthew williamson Date : Wed, 26 Apr 95 12:48:34 -700 Subject: request I am looking for information regarding use of the WWW by the handicapped, particularly those with ALS. My grandfather has the disease and I thought that there might be some way that he could continue to be "independent" and productive through access to the web and internet resources in general. Do you have any information regarding hardware and software that might be of assistance ( I have seen the page on "Bud's speech assistant"). My grandfather has only slight control of his hands but speaks relatively well. Thank you very much. Matt Williamson (10) ===== EAP or Calcium Calamine Phosphate in Europe? ========== Date : Wed, 3 May 95 14:02:32 -0500 >From : Jay Wellons Subject: new subscriber My father has ALS. I would like to become a member of the ALS group in hopes of answering some of our questions and to shake this feeling that we are the only people out there going through this kind of thing. Has anyone heard of a therapy called EAP or Calcium Calamine Phosphate offered in Europe? I would appreciate any or as much information that's out there. Send replies to wellons@fiona.umsmed.edu thanks (11) ===== ATKINSON ALS RECOVERY STUDY ========== Date : Sat, 22 Apr 1995 20:59:23 EDT >From : UKRY13A@prodigy.com (MR JOSEPH L SNYDER) Subject: ATKINSON ALS RECOVERY STUDY I had the pleasure to meet David Atkinson this week. He is the man who has been subject of several articles on his remarkable reversal of his ALS condition dx in May of 1991. He is currently gathering data on others who have recovered or reversed ALS. So far he has verified 5 including himself and is investigating several others. Each case utilized different alternative treatments, but the common thread appears to be mental imagery. He is searching for more cases so that he might publish an article or book. Unfortunately he has no computer yet, so if you have a lead on an ALS reversal or recovery from a confirmed dx please write to : DAVID ATKINSON, 221 MCCOY ROAD, SALISBURY N.C. 28144-2221 U.S.A. Hopefully when David publishes this data we can stop deadhead neuros from saying no one has ever recovered from ALS...AND GIVE SOME HOPE TO THOSE WHO NEED IT. JOE SNYDER (12) ===== Spinal Muscular Atrophy ========== Date : Sun, 7 May 1995 01:31:34 EDT Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3835 ===================================================================== To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send e-mail to Bill McGarry at the following address: INTERNET: wtm@bunker.shel.isc-br.com Bill McGarry (Moderator) (203) 926-6187 ===================================================================== Subject: Re: SPINAL MUSCULAR ATROPHY >From : suewilcox@aol.com (SueWilcox) You may receive a complimentary issue of =Living SMArt= (Living with Spinal Muscular Atrophy - Reaching Tomorrow) by emailing your postal address to me. This is a 6 issue/yr non-profit newsletter for adults with SMA, written by three persons disabled by SMA. This is a PRINT newsletter only, so I need your snail mail address. Sue Wilcox, SueWilcox@AOL.com or MVPX04A@Prodigy.com (13) ===== Wanted - Intelligent Perspective on Trend ========== >From : ajessup@electriciti.com (red irons) Newsgroups: sci.med.occupational Subject : Wanted - Intelligent Perspective on Trend Date : Sat, 06 May 1995 13:58:11 -0700 The following is a research request regarding a possible current trend in medical circles (clinical and research) intended as the basis for an article. If you have some substantive input which speaks to the issues described, I would appreciate it if you would forward a brief writeup to me describing your observations, opinions about the import of those observations, and any key contacts you feel should be consulted in researching this debvelopment. >In February 1995 a New York journalist, described a development in >medical practice as it comes face to face with the growing wave of >Internet and e-mail technology : computer-user patients who communicate >beyond their own circle of doctors, who share notes from practices in >other countries and other states, and who have access to databases, >medical texts on CDs and diagnostic programs which try to emulate the >expertise traditionally vested in the GP or medical specialist. > >Access to information on new drugs, trial drugs, and complemetary >practices related to their condition is available to anyone hooked into >the Internet or the major on-line services such as Compuserve, America >On-Line or Prodigy. > >His article focused on patients suffering from Lou Gehrigs Disease (ALS). >The illness, Amyotrophic lateral sclerosis, is a degenerative condition >in which CNS nerve cells which control movement gradually fail and muscles >atrophy, usually resulting in death. His article raises several compelling >issues concerning the consequences of e-mail connected support groups and >other forms of cybertalk among patients. > >1. A small group of ALS patients who were told by a specialist at Tufts- >New England that a few of them might try a new anti-glutamate drug called >Neurontin began a wave of demands for the drug across the country. The >clamor was fed by their discussion of the drug on Prodigy and other >on-line services. The escalation in demand resulted in an estimated 10,000 >patients taking Neurontin, as notes and optimistic but subjective reports >were shared between patients in support groups. > >2. An Internet information library called OncoLink, designed to provide >open information exchange to cancer patients, was restricted by the U. >Penn in Philadelphia in order to prevent the spread of inaccurate data; >the school turned it over to physicians in their medical school, >according to the WSJ. Some articles have been blocked from relay pending >peer review. > >3. The issues become particularly poignant in the cases of degenerative >diseases such as ALS where in some cases a patient is desparate to stop >the deterioration which is leading him to death's edge; in some cases >the patient feels he only has time for one trial. A patient in these >straits discovering through comparisons with other patients around >cyberspace that he or she is receiving a placebo in order to support a >double-blind procedure will understandably feel angry, betrayed or >victimized by the process regardless of its scientific merits, and may >drop the experiment or resort to other drugs which compromise the trial >procedure. This does not necessarily argue against open communication, >but it certainly puts the testiing modality into a harsh light. It also >raises issues about alternatives including but not limited to the >restriction of communication. > >4. Communication between patients involves emotional support, understand- >ing, insight and realistic compassion which they might otherwise suffer >with out. It is possibly in itself a therapeutic agent if only because it >provides a sense of reaching out and taking some sort of action. This >element does not figure in clinical trials, of the traditional double- >blind allopathic variety. > >5. One research physician at Harvard Medical School is quoted comparing >this development with the conditions that brought about the downfall of >communism: once people begin communicating openly, it becomes more >difficult to control them by restricting their communication lines. The >analogy is certainly strained given the differences between medical >research and the Central Committee, but there may be some abstract truth >to the observation. > >6. Traditionally, patients undergoing clinical control or drug-trial had >much less opportunity to compare notes as they rarely encountered each >other. With e-mail connections they can reach out and find each other >and begin support and discussion groups with very little effort, covering >very wide efforts. > > QUESTIONS: > >Have you experienced situations where this new ability to communicate >widely with other patients has impacted the ability of a practitioner >to control the patient? > >Do you know of cases where clinical trials of a drug or other remedy was >interfered with by discussion amongst patients? > >Do you see evidence in your professional experience that the electronic >revolution of wide-area communication and access to databases is changing >the relationship between practitioners and clients, or doctors and >patients? If so, what examples can you recall? What conclusions do you >draw from these observations? > >Do you believe this is a trend? Part of a larger trend or set of trends? >How would you describe them, if so? > >If you have observed cases of this phenomena changing the dynamics of >practice or clinical trials, would you be willing to have a short phone >interview about it? > >Thanks for your cooperation. Responses are requested by e-mail to >ajessup@electriciti.com > >Amos H. Jessup > (14) ===== query: on-line neurological support groups ========== Date : Tue, 2 May 1995 10:34:24 -0700 Sender : CNET - Speech Language Diagnostics Dilemmas : >From : Sonia Taksali Subject: hello My nams is Sonia And I am a graduate student at the University of Redlands. I am currently doing a research project in my Neurology class. I am studying support groups and information available on the internet for people with neurological disorders. It would be very helpful if you could answer a few questions or perhaps share some personal expereinces or articles. I would love to know what the benefits as well as the drawbacks to being on the internet. Your help will be greatly appreciated. Sonia Taksali, University of Redlands (15) ===== International numbers for Rhone-Poulenc Rorer ========== COUNTRY MAIN TELEPHONE MAIN TELEFAX =================================================== Australia 61 3 854 8000 61 3 854 8001 Austria 43 1 45 35 05 41 1 45 77 73 Belgium 32 2 529 46 11 32 2 529 46 98 Canada 1 514 384 8220 1 514 385 7480 Denmark ....... 54 42 81 28 88 .... 45 45 82 12 50 Finland 358 0 757 26 22 358 0 757 32 80 France 33 1 40 91 61 23 33 1 47 02 50 14 Germany 49 221 509 01 49 221 509 27 11 Greece 30 1 65 44 962 30 1 65 44 964 Holland ....... 31 20 547 3922 .... 31 20 645 3816 Ireland 353 1 289 6586 353 1 289 4984 Israel 972 9 851 222 972 9 851 444 Italy 39 2 9610 1 39 2 967 30535 Japan 81 3 3532 6111 81 3 3532 9605 South Korea ... 82 2 362 2388 ..... 82 2 393 1400 Mexico 52 5 559 4988 52 5 575 1785 New Zealand 64 4 567 86 21 64 4 567 55 38 Norway 47 67 14 99 92 47 67 14 85 66 Poland 48 2 614 57 15 48 2 614 58 11 Portugal ...... 351 1 886 61 34/9 . 351 1 87 88 37 South Africa 27 41 33 4450 27 41 33 1598 Spain 34 1 641 60 13 34 1 641 67 61 Sweden 46 42 25 34 00 46 42 15 73 00 Switzerland 41 1 723 53 11 41 1 723 53 10 United Kingdom 44 1323 534 000 ... 44 1323 534 080 USA 610 454 8000 610 454 3813 === end of als 190 ===