Date: Sat, 29 Apr 95 00:34:11 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD189 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#189, 29 April 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 == == 670+ 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 .. questions for my grandfather 2 .. questions to experts 3 .. Rhone-Poulenc Rorer 4 .. T-cells igm and als 5 .. re: ALS-ALERT-ASK THE EXPERTS 6 .. ALS IRC 7 .. post doctoral fellowship in targeted gene delivery to muscle 8 .. METHODS OF COMMUNICATION 9 .. need donated computer 10 . Synthelabo/Eliprodil 11 . Example of prof/lay learning online? 12 . Dignity Net (1) ===== questions for my grandfather ========== Date : Mon, 24 Apr 1995 16:16:29 -0700 >From : Jacquie@teleport.com (Jacquie Heller) Subject: questions for my grandfather My grandfather, a 75 year old diabetic, was just diagnosed as having PMA - progressive muscular atrophy - a form of ALS that apparently only affects older adults. It took them a long time to diagnose him corectly because they thought that he just had advancing diabetic neuropathy. Currently he is under the care of the USC Neuromuscular Research Center, where the are doing some kind of experimental therapy on him. My mother couldn't tell me exactly what it is, but she thinks it has something to do with giving him IV infusions of some kind of immune globulin. I have several questions: 1)Does anyone know anything about this experimantal therapy? My grandfather was told today that his chances of surviving more than two months are slim without a portable ventilator and perhaps (in a few months) a feeding tube. He declared in response that he would rather die. I respect his right to want to die and not have to live supported by machines, but I think a lot of his response is based on the fear of having the quality of his life so greatly reduced that it wouldn't be worth living. They told him that he could live several more years if he uses the ventilator. 2)Could anyone who has experience being on a portable ventilator and/or a feeding tube offer some their experience? I would like to be able to share with my grandfather the feelings and experiences of others who have taken these maesures to prolong their lives. 3)I am also looking for support groups for ALS patients and their families/caregivers in Southern California - LA, Orange County, and San Bernadino County. 4)I would also like to know if there is an ALS FAQ anywhere? Thank you very much, Jacquie Heller _________________________________ Jacquie Heller, RH Consulting, jacquie@teleport.com (2) ===== questions to experts ========== >From : eddie@igc.apc.org Date : Fri, 28 Apr 1995 10:52:56 -0700 Subject: Re: ALS-ALERT-ASK THE EXPERTS Dear Debra, It is nice of you to offer to ask questions of the ALS experts on behalf of those of us who are searching for answers to ALS questions but will not have access to these experts. I am trying to find out about ALS & kyphosis which is a forward spinal bent or curvature. My friend John has both of these which seemed to occur together. Since ALS is a neuromuscular condition and kyphosis is with the bones the only reason that I can think of that they would be occuring together is that perhaps the muscles are too weak to support the spine correctly. It inhibits John's ability to breath as it compresses his chest cavity. I want to know anything that I can about the joint occurence of ALS and kyphkyphosis ... Is this common? What might be able to be done to counter the breathing impairment? A back brace of some sort or perhaps a light aluminum back pack which would help pull his shoulders back and help to keep his back erect? Any other information or suggestions as to how I might be able to help John? My other interest is whether there is any books or tapes on guided imagery which might help to counter the development of the ALS or help John to have mental control over his muscles enhanced? I am following this with the enquiry that I just submitted to the ALS digest. THANK YOU IN ADVANCE FOR YOUR OFFER AND FOR ANY POSSIBLE HELP! Sincerely, Eddie Oshins 4/28/95 <> SUBMISSION TO ALS DIGEST: Date : Mon, 24 Apr 1995 01:01:22 -0700 Subject: ALS & Kyphosis inquiry? My friend John has ALS. I am writing to inquire of ALS groups such as the "Digest" to try to obtain information for him. John is in his 70s. Not quite 2 years ago, he was diagnosed with ALS. He had been having tiredness, a sluring of speach, and other forms of weekness which I would associate with diminished breathing. He had also started to develop "kyphosis" (a forward spinal bent or curvature). Since his diagnosis, we have been spending time together relaxing and doind "abdominal breathing". I believe that this makes more oxygen available to him. It is also relaxing and I think that the imagery helps, eg. I have just started to suggest to him that when he breathes in his stomach he should think of it as stretching his spine, releasing any stress in the disk and muscular areas, and settling the disks back together in a comfortable alinement. He also has a physical therapist, does exercises and has a supportive and loving environment. My questions are: (1) Does anyone have experience with both ALS & kyphosis? I would appreciate any suggestions. The kyphosis crunches the chest down which makes it hard for John to breath. I thought that something like an aluminum framed backpack could help him to keep his shoulders back and open up the chest area which at the same time help to keep his back somewhat straighter. Does anyone have any experience or pertinent knowledge? (2) I think that the breathing in the abdomin is helpful to John. Perhaps there are others out there who might benefit. The idea is basicly to breath with the stomach instead of the chest as if the stomach was filling with a liquid like pouring water into a ballon, ie. fills from bottom up and empties from top down.... One should also imagine the body expanding both from the stomach and from the back as would be the case if one filled a ballon. My question is: I have heard of imagery being used to fight other imunological conditions, say imagine a light fish swimming through the body and eating the cancer cells, or some such. Does anyone have knowledge of these kinds of hypnotic type exercises? Tapes? Books? Any suggestions how such might be most effectively adapted to ALS and muscle control through the mind and intention? I thank anyone in advance for their consideration and possible help. Sincerely, Eddie Oshins <> (3) ===== Rhone-Poulenc Rorer ========== Date : Thu, 27 Apr 1995 22:25:10 EDT >From : PDNS06A@prodigy.com ( D L BARBER) Subject: Re: ALS Digest; Pls forward to all I got through to Rhone-Poulenc Rorer, the mfg of Riluzole today and was very pleased with the dialogue. They answered all of my questions and I even got more input to the realm of Riluzole than I asked for. The most surprising thing is that there are still spots open for the 'Early Access' program, assuming the FDA approves that, let alone the drug itself for open marketing here in the U.S. They told me that the FDA appears to be speedily working its way towards a decision, as RPR has received several questions, the answers for which were submitted. The answers to my questions of the asthenia (fatigue) and the elevated liver enzymes were satisfactory, and I am proceeding to my Dr. for confirmation and further input. As these answers are rather technical, I will not attempt to interpret here, as that s/b for the one asking. Therefore, I encourage all to call RPR at two locations, post haste; 800-798-7425 to attempt to get on the 'Early Access' program and for general information questions about your progress whit ALS. They are gathering infromation about the general market, as any thorough effort should. 610-454-3890 for Bob Partridge who can answer in detail about side effects and RPR's approach to the issue nd its status with the FDA. Bob is the Mgr of Product Communication, so you get the glossy version, but clearly without promises or claims. Their interest is making money on the drug, as any drug company in the free world will. I am thankful that they are, as I am 41 years old, diagnosed almost 3 whole months ago and just started my 20th yearof working out to stay fit.. at least as much as I can now. Lest I be at risk for brandishing our Congresspersons, but it could certainly not hurt to write to them or your Senators, asking them to encourage the FDA to not delay in their review and approval of (Ril'-you-zoll). I did not quote Mr Partridge on that statement about RPR wanting to make money on the drug, but I am rather certain they are in business to make a profit. However I will quote him in his high opinion of this INTERNET ALS Digest and the following it has. Wish them and the FDA Godspeed. (4) ===== T-cells igm and als ========== Date : 28 Apr 95 16:31:56 EDT >From : "J.V. WALLACE" <74241.2320@compuserve.com> Subject: T-cells igm and als I was dx with als february 1994. I had some tests by my family dr. this month which showed a elevated serum IGM 318 , also abnormal t-cell lab with wbc at 3.4, lymphocyte percentage at 48, cd4 helper/inducer decrease at 330 per cmm and 20% and a helper supresso ratio of .053 also an equivocal helicobacter pylori result. Hiv tests are normal and i am not at risk for hiv. Is this typical with ALs? how concerned should i be? and has anyone else had similar lab results? also 12 months prior to als onset i had nightsweats and fever and low tempeature fluctuations and dizziness for 4 months and a slightly enlarged lymphnode hilar on chest xray Thanx J.V Wallace (5) ===== re: ALS-ALERT-ASK THE EXPERTS ========== Date : Fri, 28 Apr 1995 14:43:17 EDT >From : KRYX96A@prodigy.com (DR SCOTT L BERNARD) Subject: ALS-ALERT-ASK THE EXPERTS Debra, I recommend that you consider listing the questions for the ALS-Ask-The- Experts panel on paper... those that you don't get to may still stir something in the minds of the panel reader even if they read your questions after the conference. Scott (6) ===== ALS IRC ========== Date : Mon, 24 Apr 1995 02:25:12 -0700 >From : jwallis@Direct.CA (John Wallis) Subject: ALS IRC Just quick note to ask if there is a common IRC channel for ALS, if not maybe it would be a good idea to send out a message to all your subscribers that they could meet in IRC. I not greatly familiar with IRC and i'm not too sure if you need a bot to keep the channel up at all times. Anyways just an idea. If their is already such a place please let me know. Thanks ================================================================== ==================== CYA L8R JOHN WALLIS ==================== ================================================================== (7) ===== post doctoral fellowship in targeted gene delivery to muscle ========== Date : Fri, 28 Apr 1995 13:46:34 +0100 Sender : Human Molecular Genetics >From : Arthur Bergen Subject: ANNO: POST DOCTORAL FELLOWSHIP IN TARGETED GENE DELIVERY TO MUSCLE POST DOCTORAL FELLOWSHIP IN TARGETED GENE DELIVERY TO MUSCLE The Molecular Medicine Research Program of the Scott-Ritchey Research Center is accepting applications for a post doctoral fellow who will investigate methods of targeted gene delivery to accomplish therapy for myopathies. This position requires the candidate to have earned the Ph.D., M.D., or D.V.M. degree. Experience is required with techniques of molecular biology, gene expression, and/or gene transfer. The term of this fellowship will be two to three years, and the position is open immediately. The research project involves the use of murine and canine myopathy models and a variety of gene transfer vectors to test gene transfer methods in vitro and in vivo. The Molecular Medicine Research Program is actively engaged in research on gene therapy for inherited diseases and cancer, characterizing the genetic bases for a variety of inherited diseases, and defining the pathogenesis of inherited diseases. Auburn University is an affirmative action/equal opportunity employer. Women and minorities are encouraged to apply. Applications will be reviewed upon receipt, continuing until the position is filled. Interested candidates should send a letter/e-mail of interest, two references and a Curriculum Vitae to: Dr. Bruce F. Smith Scott-Ritchey Research Center Auburn University Auburn, Al 36849 334-844-5951 (N.B. If this area code does not work, try the old one, 205, which is good through May 13, 1995) smithbf@mail.auburn.edu (8) ===== METHODS OF COMMUNICATION ========== Date : 25 Apr 95 22:14:49 EDT >From : Peter Strugatz <73523.151@compuserve.com> To : ALS-TALK Subject: METHODS OF COMMUNICATION We are CINI; Communication Independence for the Neurologically Impaired. We are a nonprofit dedicated to Aug Com Solutions for the ALS Communty. We would very much like to hear from ALS impaired persons or their caretakers or their friends in regards to the methods of communication they are using. Please state any equipment, software or hardware that is being used if an electronic solution is being used. Please describe any other methods that is being used. Thanks for your cooperation. Peter Strugatz, President, CINI (9) ===== need donated computer ========== Date : Sun, 23 Apr 1995 11:38:27 -0400 >From : JTSLOM@aol.com Subject: Re: ALSD187 ALS-ON-LINE My cousin is an artist and designer. She now has trouble walking, talking and using her hands. She is on disability. Any ideas as to how I could contact anyone or any company that might donate a used (or new) computer to her that she could use to communicate with (AOL email) and continue designing a house that she was working on (needs to be able to support a graphics program)? Thanks for any suggestions, we don't know where to turn. (10) ===== Synthelabo/Eliprodil ========== Marketletter 04/17/95 Synthelabo Reports On New Products Synthelabo is making excellent progress in developing new products and is expected to file for registration for two drugs in Europe this year and from then on make one application for registration each year, according to Herve Guerin, chairman and chief executive at Synthelabo. < parts deleted > Eliprodil is a neuroprotectant which acts as an antagonist of the N-methyl-D-aspartate receptor. The drug has shown good neuroprotective effects in models of cerebral ischemia such as thrombosis and brain trauma. It does not show psychostimulant, amnesic, myorelaxant and neurotoxic effects. In addition, said Dr Langer, there is a complete absence of tachycardia and hypertension. Anticipated therapeutic indications include stroke, head injury and possibly amyotrophic ============ lateral sclerosis and neurodegenerative disease. The drug is in Phase ================= II/III in Europe and the USA, and Mr Guerin added that an Investigational New Drug application has been filed recently with the US Food and Drug Administration. < parts deleted > (11) ===== Example of prof/lay learning online? ========== Date : Sat, 15 Apr 1995 12:41:51 -0400 Sender : Discussion of research into Self-Help and Mutual Support : >From : EdMadara@AOL.COM Subject: Example of prof/lay learning online? Like for the traditional self-help groups, online self-help networks offer many opportunities for lay folks and professionals to communicate (actually such online communication is even easier than the traditional face to face!). For an upcoming presentation, I'm searching for any examples of how ONLINE COMMUNICATION, between patients and health professionals, may have resulted in any new understanding on the part of the professional, or collaborations between the two (actually this isn't a bad research question for the traditional in-person self-help groups). Does anyone have any example of a message or message thread that reflects an effort towards lay/professional joint discussions, understandings or learning online? If not now, possibly keep me in mind for any future sighting (I'll gladly provide a complimentary copy of the new 5th Edition of the Self-Help Sourcebook, which is at printer's, for any example that I or others may use). Thank you kindly for any leads. - Ed (reply to edmadara@aol) (12) ===== Dignity Net ========== Date : Mon, 24 Apr 1995 12:03:35 CDT Sender : NEW-LIST - New List Announcements >From : "Storm A. King" Subject: NEW: DNET - DIGNITY NET - facilitating on-line support & : counseling services dnet on majordomo@laplaza.taos.nm.us dnet (Dignity Net) is a discussion group or "gathering spot" for individuals and networks involved in facilitating on-line support & counseling services. This listserv provides a forum for the exchange of ideas, experience, and encouragement in setting up and maintaining services that dignify and empower people through networking. Dignity Net is unmoderated and anyone may join. After subscribing you will receive a short info paragraph about dnet and help about using the list server. It is suggested that shortly after joining you send some sort of introduction - to help folks get to know you. To subscribe send subscribe dnet in the body of an email message (no subject line) to majordomo@laplaza.taos.nm.us It's my hope that it will become a forum for creativity and encouragement. This is a new group, so jump out there and share your ideas, concerns, stories, and dreams. We are interested in a blend of professionalism with clinical expertise and humanism involving compassion. Owner: Stewart S. Warren treedog@laplaza.taos.nm.us Mercury Heart Link === end of als 189 ===