=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#86, 04 March 1994) == == == == ------ 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 == == 210+ 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 == == == == The ALS Digest is not a peer reviewed journal and it is == == not edited by an MD. It comes out (usually) weekly. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 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 /pub/als == == Hardcopy versions (with extensive indexing) available == == from Grant Nicholas (gnicholas@pcgate.lanl.gov) == == A Global Index of issues 1-75 (created by G. Nicholas) == == is available via FTP. The 150K file is named als.index == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Riluzole questions 2 .. how to get back issues of ALS Digest via e-mail 3 .. Help! Computer hardware/software for ALS handicap. 4 .. Re: Ritalin 5 .. 1st Asia-Pacific Colloquim in Neuroscience 6 .. IEEIR 7 .. recent interesting publications re ALS (1) ===== Riluzole questions ========== Date : Thu, 3 Mar 94 21:34:30 EST >From : vprice@welchlink.welch.jhu.edu (VALERY PRICE ) Subject: Riluzole questions An interest recently arose to Riluzole, and I have several questions in connection with it . The chemical structure of Riluzole suggests that it must not dissolve well in neutral cold water, but must easily dissolve in water with addition of acids, e.g. in stomach, and must not dissolve at all and consequently must sedimentate in alkaline media of intestine, which may cause ulceration. If for example a patient has gg-tube and thus Riluzole goes directly into intestine, sedimentation scenario doesn't look improbable. Is it possible that some of the side effects like nausea may be attributed to this kind of dissolution problem ? Other questions concern an early trial of Riluzole for schizophrenia patients . Does Riluzole have any sedative action , does it penetrate blood-brain barrier ? And finally, I haven't seen any proof that Riluzole actually slows release of Glutamate into intercellular space, as Dr. Jeffrey Rothstein reasonably but purely theoretically suggested . Does anybody know any experimental proof ? Sincerely, Victor Blok (Baltimore, MD) (2) ===== how to get back issues of ALS Digest via e-mail ========== > >Date : Fri, 4 Mar 94 11:47:10 EST >From : "Stevens, Michael" >Subject: Re: ALS Info > >Thank you for the info you sent me as a new subscriber to the >ALS Digest. I am interested in seeing a sampling of recent >back issues and requested "INDEX ALS," as stipulated in your >message. I received an index listing that I don't quite >understand and have no instructions about how to retrieve >individual items. >I would be very grateful for any further guidance you can give >me as to what I need to do. > Sorry ... have been too busy trying to ba a good care giver to my ALS-afflicted wife to be a proper list manager. Also, as the official (but as yet, not democratically elected) leader of the ALS Assn - Tallahassee Support Group, I have been distributing hardcopy messages re Riluzole, etc. to the local population. Not all back issues have been transferred to mailer.fsu.edu yet, but most of them have. Will get the most recent back issues transferred very soon ... maybe this weekend (?). Here is how to get back issues of the ALS Digest via e-mail. Send a message to LISTSERV@mailer.fsu.edu Ignore the SUBJECT line. In the first line of the message, type: INDEX ALS That will send you a list of back issues .... ALSD01, ALSD02, etc. To get one of the issues, say for instance ALS Digest #61, you would say GET ALS ALSD61 (in the first line of the message). To get information about LISTSERV commands, send the message HELP. Here is an example of what you could do: mail LISTSERV@mailer.fsu.edu HELP INDEX ALS GET ALS ALSD61 GET ALS ALSD62 This will send you the help file, will send you a listing of available back issues, and will send you copies of ALS Digests #61 and #62. Hope this helps. If you have any problems, please let me know. Many thanks to you and all of the over 210+ e-mail users who are making the ALS Interest Group a worthwhile effort. rgds,bro (Bob Broedel) (3) ===== Help! Computer hardware/software for ALS handicap. ========== --------------------------------------------------------- Date : Fri, 25 Feb 1994 10:18:37 EST Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3410 ___________________________________________________________________ Subject: Help! Computer hardware/software for ALS handicap. I am look for any companies (or individuals) that provide specialized computer hardware and software for people who have ALS (or similar handicaps). The first thing that comes to most peoples minds is the physicist Steven Hawkings and his speech synthisizer setup. I'm looking for basically the same thing. I've heard of a doctor in Tulsa Oklahoma that was working on a full system to do many tasks for such people. Any information on this subject would be extremely helpfull. Please send info to "scott.wilkins@ninth.ucc.okstate.edu" Thanks in advance! Scott Wilkins (4) ===== Re: Ritalin ========== Date : Wed, 23 Feb 1994 18:53:53 -0600 Sender : Hospital Computer Network Discussion Group and Data Base : >From : "Richard Z. Toptani" Subject: Re: Ritalin In article , rjreilly@delphi.com wrote: > Does anyone have any information on the long term effects of administering > Ritalin during elementary school years? Does anyone have any information on > effects on creativity in later years, i.e. young adulthood? Is Ritalin on > any watch list or suspect drug list as a cause of neurological disorders > such as MS, ALS or Muscular Dystrophy? > ~~~~~ As an adult with Narcolepsy, and who will most likely be taking Ritaln for the rest of my life, I have also had some concerns about long term use. And being a medical student, I am very careful about what I put in my body, so a couple years back, I read up on everyting I could find on Ritalin, and I think that the only significant problem with long-term use I could finde was that it could possibly supress growth in some children. I found no evidence that it could cause any of the neurological disorders you mentioned. It seemes to be relatively safe when not taken in excess, and seems to have fewer and less severe side effects than most medications. (ALL medications have side effects!). Anyway, I'll check around to see if there have been any recent developments, and if I come across anything significant, I'll let you know. =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= = Richard Z. Toptani 6700 S Brainard Ave #402 = = rtoptani@interaccess.com Countryside IL 60525-4661 = = For PGP public key: finger 0x543335@wasabi.io.com = =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= (5) ===== 1st Asia-Pacific Colloquium in Neuroscience ========== Date : Wed, 2 Mar 1994 15:17:54 SST Sender: Neuroscience Information Forum : >From : CK Tan CONFERENCE ANNOUNCEMENT 1st Asia-Pacific Colloquium in Neuroscience 15 - 17 December 1994 Location: Republic of Singapore Organised by: Singapore Neuroscience Association Sponsored by: National University of Singapore Ministry of Health, Singapore Summary of Colloquium Information Papers will be both Oral (15 min) and Poster rounds (5 min). Symposia: 1) Autonomic Nervous System 11) Neurodegenerative Disorders 2) Cerebral Physiology 12) Neuroendocrinology 3) Drugs of Abuse 13) Neuropeptides 4) Expt. Chagas' Disease 14) Neuropathology 5) Learning, Memory, Ageing 15) Neuropharmacology 6) Methods in Neuroscience 16) Neurosurgery 7) Microglia / Neuroglia 17) Neurotoxins 8) Neural Development / Plasticity 18) Pain 9) Neural Transplantation 19) Schizophrenia 10) Neurochemistry 20) Special Senses For more information and a copy of the Final Announcement, please e-mail: 1) med10001@leonis.nus.sg or 2) anttanck@nusvm.bitnet Or Write to: Singapore Neuroscience Association c/o Department of Anatomy National University of Singapore Kent Ridge Singapore 0511 (6) ===== IEEIR ========== Date : Thu, 24 Feb 1994 11:51:34 -0500 (EST) >From : Diane E Woods Subject: IEEIR Would you please forward the following to your ALS list? Thank you. -------------------------- snip! --------------------------------------- The International Exchange of Experts and Information in Rehabilitation (IEEIR) is a project of the National Institute for Disability and Rehabilitation Research (NIDRR) with limited funds to award short term overseas fellowships and to publish relevant materials regarding disability issues in other countries and cultures for distribution in the U.S. In the past 15 years we have funded 175 fellowships and are currently distributing 55 reports on a variety of topics. Fees for obtaining our materials are reasonable. Please call, write, or send e-mail (include your shipping address) for a brochure. - Diane E. Woods, Project Director <-------------------------------------------------------------------------> | Diane E. Woods, Project Director | IEEIR c/o Institute on Disability | | | University of New Hampshire | | Tel: 603-862-0551 | 125 Technology Drive | | FAX: 603-862-0555 | Durham, NH 03824 | | E-MAIL: IEEIR@unh.edu | U.S.A. | | | | |____________________________________|____________________________________| (7) ===== recent interesting publications re ALS ========== Date : Wed, 2 Mar 94 22:51:19 EST >From : vprice@welchlink.welch.jhu.edu (VALERY PRICE ) Subject: Recent interesting publications I think the following three recent publications may be of interest to our fellow-networkers. Sincerely, Victor Blok (Baltimore, MD) ---------- AU - Bach JR TI - AMYOTROPHIC LATERAL SCLEROSIS - COMMUNICATION STATUS AND SURVIVAL WITH VENTILATORY SUPPORT SO - American Journal of Physical Medicine & Rehabilitation 1993 Dec;72(6):343-349 AB - The use of ventilatory support via an indwelling tracheostomy tube in the management of advanced amyotrophic lateral sclerosis patients demands the committment of enormous resources. The use of noninvasive respiratory aids can facilitate and simplify home management, decrease expense and prepare patients and families for decision making regarding tracheostomy if and when this becomes necessary. The purposes of this study were to: describe the utility of noninvasive respiratory aids, determine to what extent survival might be expected to increase by the use of mechanical ventilation, and explore the consequences of patient disposition and communication status on survival. Eighty-nine patients survived a mean of 4.4 +/- 3.9 yr (range = 1 month to 26.5 yr) using respiratory support. This included 37 patients who were still alive. The up to 24 h use of noninvasive intermittent positive pressure ventilation (IPPV) methods delayed or eliminated tracheostomy for 25 patients. Survival was comparable for patients maintained at home or in chronic care facilities. The maintenance of effective communication appeared to favor patients remaining in the community. It could not be shown to affect survival, but it greatly increased quality of life. The use of noninvasive respiratory muscle aids can eliminate the need for ''crisis'' decision making regarding tracheostomy for many individuals with ALS. [References: 40] IN - Reprint available from: Bach JR UNIV MED & DENT NEW JERSEY UNIV HOSP DEPT REHABIL MED B-239 150 BERGEN ST NEWARK, NJ 07103 USA ---------- AU - Beghi E AU - Fiordelli E AU - Mora G AU - Mazzini L AU - Poloni M AU - Pinelli P AU - Testa D AU - Cornelio F AU - Leone M AU - Bottacchi E AU - Chio A AU - Schiffer D AU - gi S AU - Sabatelli M AU - Tonali P AU - Formica A AU - Berardelli A AU - Manfredi M AU - Cattich N AU - Ferrannini E AU - Livrea P AU - Coretti A AU - Huber R AU - Musicco M TI - BRANCHED-CHAIN AMINO ACIDS AND AMYOTROPHIC LATERAL SCLEROSIS - A TREATMENT FAILURE SO - Neurology 1993 Dec;43(12):2466-2470 AB - We initiated a double-blind, placebo-controlled trial to test the efficacy and safety of branched-chain amino acids (BCAA) (L-leucine 12 g, L-isoleucine 6 g and L-valine 6 g daily) in amyotrophic lateral sclerosis (ALS) patients. There was an excess mortality in subjects randomized to active treatment (24 BCAA, 13 placebo) when a total of 126 ALS patients had been recruited. This finding, associated with the lack of efficacy of BCAA (measured by comparing the disability scales in the two treatment groups), led the Data Monitoring Committee to require cessation of the trial. [References: 22] IN - Reprint available from: Beghi E MARIO NEGRI INST PHARMACOL RES VIA ERITREA 62 I-20157 MILAN ITALY ---------- AU - Mcdonald ER AU - Wiedenfeld SA AU - Hillel A AU - Carpenter CL AU - Walter RA TI - SURVIVAL IN AMYOTROPHIC LATERAL SCLEROSIS - THE ROLE OF PSYCHOLOGICAL FACTORS SO - Archives of Neurology 1994 Jan;51(1):17-23 AB - Objective: Examining the relationship between psychological status and survival in amyotrophic lateral sclerosis. Our hypothesis is that psychological distress is associated with greater mortality and sortesurvival time than psychological well-being. Design: Cross-sectional, longitudinal. The baseline evaluations used were disease severity and 10 psychometric tests. A psychological status score was derived from these tests. Survival status was monitored for 3.5 years. Interviewers were blinded to other interviews and data analysis. Setting: Patient's residence. Patients: The criteria for eligibility were diagnosis of amyotrophic lateral sclerosis by a neurologist, dementia or alcoholism absent, communication in English, and any severity or length of disease. It was a volunteer sample consisting of 144 patients from amyotrophic lateral sclerosis clinics or community-based amyotrophic lateral sclerosis support groups. In this sample 66% were men, 94% were white, mean age at diagnosis was 55 years, 79% were married, 60% had some college education, and 61%, died during the study. Interventions: None. Main Outcome Measures: End points: mortality during study, survival time from intake to last follow-up. Results: Comparison between high and low psychological score groups: 32% of high and 82% of low died; survival cur-ves were significantly different. Controlling for confounding factors (length of illness, disease severity, age), patients with psychological distress had a greater risk of mortality (relative risk, 6.76; 95% confidence limits, 1.69 to 27.12) and greater likelihood of dying in any given time period (relative risk, 2.24; 95% confidence limits, 1.08 to 4.64) than those with psychological well-being. Conclusion: Adjusting for confounding factors, psychological status is strongly related to outcome in amyotrophic lateral sclerosis. Further studies on psychological status should be done to confirm its prognostic value. [References: 49] IN - Reprint available from: Mcdonald ER ALS PATIENT PROFILE PROJECT POB 15981 SEATTLE, WA 98115 USA == end of als 86 ==