=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#118, 16 August 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 == == 300+ 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 .. 10 Commandments for Healthy Living 2 .. need Russian language help 3 .. als and enterovirus 4 .. RILUZOLE 5 .. CompuServe and the MDA Telethon 6 .. MOTOR NEURON DISEASE (book) 7 .. search on enterovirus & ALS 8 .. Technology 9 .. Jerry's Orphans 10 . neuromuscular group (1) ===== 10 Commandments for Healthy Living ========== >From : EvelynL978@aol.com Sender : "EvelynL978" Date : Sun, 14 Aug 94 04:24:50 EDT Subject: 10 Commandments for Healthy Living 10 COMMANDMENTS FOR HEALTHY LIVING The following might be considered the 10 commandments for healthy living. 1. Exercise Thy Body - There is no need to climb mountains as Moses did, but if you don't use it, you'll lose it. A famous physician once wrote, " If exercise came in a pill bottle, it would be the most widely prescribed medicine of all." 2. Exercise Thy Mind - A sound mind in a sound body... Again, if you don't use it, you'll lose it. Read. Write. Go back to school. Exchange ideas. Be creative. Be reflective. Learn something new every day. Share what you learn with others. 3. Exercise Thy Spirit - Read inspirational and/or scriptural works. Don't be afraid to be open and loving. Give---and allow others to give to you. Be sure there's a balance in your life: time alone, time with one other person, and time with groups of people. 4. Exercise Thy Willpower - Examine your habits---the ones you want to develop, and the ones you want to change. Then, set goals and make those changes. 5. Have A Happy Heart - Laugh. Live. Create. Share surprises. Help others find joy and purpose in their lives. 6. Play - Schedule time for pure play, and find ways throughout your day to have fun. 7. Eat, Drink, and Be Merry---Sensibly - Don't eat or drink or do anything else to excess. Don't smoke cigarettes or use harmful drugs. Don't take stupid chances. 8. Give Up Guilt, Regret and Depression - Let go of the past, and move on! Decide what's wrong, not who's wrong, and take action. 9. Fear Not the Future - The best thing about the future is that it comes only one day at a time. The future's not totally in your control, but if you take care of today, most of the future will take care of itself. 10. Live Now - Learn brom the past, plan for the future, and live in the present. Love others (and yourself) appropriately -- now. Look for leaders (living, dead, or imagined) who are worthy of admiration and imitate their good qualities. Pursue and preserve healthy relationships; you become like those you are with. I was diagnosed with ALS, in Feb. 1993. I try to live by these commandments. They have proven worthy of my time. Please share them with others. Take care, but be Happy & have Fun! Evelyn.978 (2) ===== need Russian language help ========== >From : Millec@aol.com X-Mailer: America Online Mailer Sender : "Millec" Date : Sat, 13 Aug 94 21:19:00 EDT Subject : need Russian language help One woman in our ALS support is going to visit the home of her ancestors in Russia. She wants to know how to say amyotrophic lateral sclerosis or motor neurone disease in Russian so she can explain to friends there what is happening to her. I would appreciate any help on this. Carol (3) ===== als and enterovirus ========== Date : 14 Aug 94 19:42:42 EDT >From : wayne phillips <70303.173@compuserve.com> Subject: als and enterovirus re:ALS and enterovirus I'm not necessarily asking anyone to send me answers here, just hoping to stir up thought. 1.possible source of infection: cats:cat scratch fever, feline viral leukemia. Our family cat died of feline viral leukemia about 6 years prior to my onset. I was only at my parent's house on vacations so I wasn't exposed continually over a long period. About the same time I had a fever but only had swollen and sore lymph nodes on the right side of my neck and under my right arm. Our family doctor asked about the scratches on my right hand; I had been scratched by three cats in the previous couple of weeks. (I don't recall if one was the leukemia victim.) Without further tests he said that I probably had cat scratch fever. The germ (I think he said virus) is present on all cats' claws but has "very low infectability." Only one scratch of thousands will cause infection. Are these enteroviruses? Could the infection have remained low level until a trigger event? My onset occurred during a period of several months of high job stress. One night, about a month before I noticed my fasciculations, I was under so much stress that my whole body was shaking and I had trouble walking. Animal experiments along this line may be aided by keeping the animals under stress to lower resistance. 2.Could enteroviruses cause the point mutations associated with familial ALS? If they "prefer" to change the SOD1 gene, an infection of sperm or eggs may be the origin of familial pedigrees. An infection that becomes widespread only in post-childbearing years or limited to the CNS could cause sporadic cases with the same mechanism. 3.Could enteroviruses be responsable for the skin changes in ALS (ALSD112) and the autoimmune response reported by Dr. Appel et. al. at Baylor? good hunting, Wayne (4) ===== RILUZOLE ========== Date : Mon, 15 Aug 94 11:23 EDT >From : joan@sybus.com (Joan Smith) Subject: RILUZOLE Has anyone in the research community heard of a drug RILUZOLE for the treatment of ALS? This was particular drug was mentioned by one of my mother-in-law's doctors, as one which is currently being tested in France. Does anyone have any specific information on it- its effectiveness, how/where to get it? If used in the US, what would a US doctor need to know in terms of follow-up and consultation with his patient? Any related information would be appreciated. Joan Smith (5) ===== CompuServe and the MDA Telethon. ========== Muscular Dystrophy Association Forum Opens (15-Aug-94) Members interested in the 1994 Stars Across America Jerry Lewis MDA Labor Day Telethon and neuromuscular diseases can access the Muscular Dystrophy Association Forum for a continually updated schedule of telethon events, to read about research, medical seminars, and special task-force meetings, and to access patient profiles and accomplishments, news releases, and stories about the MDA's work. The forum is open before, during, and after the 4-Sept event, marking the first time CompuServe members can tap into an online area devoted to a telethon of this magnitude. While the forum is normally an extended service, it will be free of connect-time charges during Labor Day weekend, from 5 p.m. EDT (23:00 CET) on 2-Sept to 12 a.m. (06:00 CET) EDT on 6-Sept. Drawing an audience that rivals those of the World Series and the Academy Awards, the telethon will be hosted in Las Vegas, presenting more than 21 hours of star-studded entertainment. The show will also feature pre-taped elements and live remotes from New York; Los Angeles; Branson, Missouri; San Antonio, Texas; Nashville, Tennessee; Myrtle Beach, South Carolina; and from aboard a cruise ship. MDA personnel, the telethon producer, and the 200 U.S. television stations carrying the telethon will use the MDA Forum and other online areas to communicate live before and during the show. In addition, celebrities appearing on the telethon will be invited to interact with their fans online. CompuServe members can also make credit-card donations via the MDA main menu for one year beginning 15-Aug. The MDA fights 40 neuromuscular diseases through a worldwide research effort, a U.S. program of medical services, and professional and public health education. Because of such programs, the MDA is recognized as the world's leading sponsor of neuromuscular research and provider of services to patients affected by neuromuscular disorders and their families. To reach the MDA main menu, which includes access to the forum and an area for making donations, GO MDA. The main menu is a part of CompuServe's basic services. The MDA Forum is a part of CompuServe's extended services. (6) ===== MOTOR NEURON DISEASE (book) ========== MOTOR NEURON DISEASE Edited by A.C. Williams 1994, 755 pages, $147.00 Chapman & Hall; 2-6 Boundary Row; London SE1 8HN ENGLAND TEL ?? FAX ?? US Office: Chapman & Hall; One Penn Plaza, 41st floor; New York, NY 10119 TEL 212-564-1060 FAX 212-564-1505 CONTENTS: List of Contributors Preface PART ONE 1 Clinical features and differential diagnosis of classical motor neuron disease Rup Tandan 2 Spinal muscular atrophies Neil H. Thomas and Victor Dubowitz 3 Motor neuropathies P.K. Thomas and H.J. Willison 4 Post-polio motor neurone disease Marinos C. Dalakas 5 Amyotrophic lateral sclerosis-parkinsonism-dementia complex on Guam: epidemiologic and etiological perspectives Leonard T. Kurland, Kurupath Radhakrishnan, David B. Williams, and Stephen C. Waring 6 The natural history of amyotrophic lateral sclerosis Benjamin Rix Brooks, David Lewis, Jon Rawling, Mohammed Sanjak, Daryn Belden, Hisham Hakim, Yan de Tan, Robert Sufit, James Gaffney, and Roxanne Depaul 7 Neurophysiology N.M.F. Murray PART TWO 8 Early management Tom Heafield and Amanda Powell 9 A carer's perspective Rosalind Pegg 10 Coping with the disability of established disease Jim Unsworth 11 Respiratory function Forbes H. Norris and Robert J. Fallat 12 Nutritional Support J.K. Rawlings and S.P. Allison 13 Terminal care David Oliver 14 The role of patient and carer associations Peter Cardy PART THREE 15 Classical pathology Marco Rossi 16 Ubiquiton P.N. Leigh 17 Neurofilamentous pathology Danny F. Watson PART FOUR 18 Epidemiology Christopher N. Martyn 19 Familial disease Denise A. Figlewicz and Guy A. Rouleau 20 Gene expression Jacqueline de Belleroche and Lisa Virgo 21 Xenobiotic metabolism Rosemary Waring 22 Excitatory amino acid transmitters Bernard M. Patten 23 Metals and free radicals Hardev S. Pall 24 Autoimmune aspects Stanley H. Appel, R. Glenn Smith, Jozsef I. Engelhardt, and Enrico Stefani 25 Trophic factors Rae Nishi and Felix P. Eckenstein 26 Chemical Toxins Peter B. Nunn 27 Viruses and motor neuron disease: the viral hypothesis lives Dorothy C. Kelley-Geraghty and Burk Jubelt 28 Neuropeptides: occurrence in motor nerves and relevance to motor neurone disease Julia M. Polak and Sally J. Gibson 29 Animal models of motor neuron disease Joseph E. Mazurkiewicz 30 Cell culture of motor neurons Sarah Harper and Frank Walsh 31 Clinical trials T.J. Steiner POSTSCRIPT Laughter in Hell from Collected Poems of George Macbeth Index (7) ===== search on enterovirus & ALS ========== ========================================================= Title : Enteroviral-related antigen in circulating immune : complexes of amyotrophic lateral sclerosis patients. Author : Bartfeld H; Dham C; Donnenfeld H; Ollar RA; deMasi MT; : Kascsak R Source : Intervirology 1989;30(4):202-12 Abstract : Circulating immune complexes were isolated by polyethylene glycol precipitation from the sera of patients with amyotrophic lateral sclerosis. Rabbits immunized with circulating immune complexes from 3 of 5 amyotrophic lateral sclerosis patients induced antisera that specifically reacted with enterovirus-infected cells by immunofluorescence and enzyme-linked immunosorbent assay. These antisera were nonneutralizing and did not react with purified virus. In addition, peripheral lymphocytes of amyotrophic lateral sclerosis patients produced lymphokine in response to extracts from enterovirus (Coxsackie B4) infected cells. These results suggest both a humoral (circulating immune complex) and a cellular immune response in some patients with amyotrophic lateral sclerosis to enterovirus-coded or -induced antigen. ========================================================= ========================================================= Title : Sequences specific for enterovirus detected in spinal : cord from patients with motor neurone disease Author : Woodall C.J.; Riding M.H.; Graham D.I.; Clements G.B.; Source : 1994 308/6943 (1541-1543) BMJOA British Medical Journal Abstract : Objective - To investigate the association of enteroviruses with motor neurone disease, also known as amyotrophic lateral sclerosis. Design - Analysis by enterovirus polymerase chain reaction of wax embedded material from spinal cords taken at necropsy from subjects with motor neurone disease and from age and sex matched controls. Setting - Specimens were collected in the west of Scotland and in London between 1982 and 1992. Results - Sequences specific for a non-poliovirus type enterovirus were detected in spinal cord tissue from subjects with motor neurone disease. Amplification of a 414 base RNA target sequence in the conserved enterovirus 5' untranslated region from wax embedded tissue sections was successful in tissue from eight of 11 cases of sporadic motor neurone disease, one of two cases of familial motor neurone disease, and the one case of poliomyelitis, but not in the six matched controls or one case of antecedent poliomyelitis. In addition, sequences were detected in spinal cords from one monkey infected with wild type poliovirus and one monkey infected with polio vaccine. Comparison of sequences from cases of motor neurone disease with sequences of corresponding regions of the 5' untranslated regions of known picornaviruses showed them to be tightly grouped within the enterovirus genus closely related to coxsackievirus type B but not to polioviruses. Sequences derived from different parts of the spinal cord of the same subjects were identical, but sequences differed between individual subjects. Conclusions - Conserved enteroviral sequences closely related to coxsackie B virus sequences were detectable in spinal cords from subjects with sporadic motor neurone disease and from one subject with possible familial motor neurone disease. (8) ===== Technology ========== Date : Mon, 15 Aug 94 16:01 EST >From : Mark Reeverts <0006890746@mcimail.com> Subject: Technology I'm interested in finding communication technology options for a friend with ALS. He has entered a critically low level of verbal ability. Any directions to look for: retinal movement recognition systems, voice synthesis, etc. are helpfull. He has access to a Mac with no special adaptions if that crystalizes any directions. Thanks, Mark (9) ===== Jerry's Orphans ========== Date : Mon, 15 Aug 1994 16:33:44 -0500 Sender : Forum for Information Networking on Disability : >From : Barbara Robertson Subject: Jerry's Orphans Someone asked me how Jerry's Orphans could be contacted, and I realized that others might want to know as well, so here goes: Jerry's Orphans P.O. Box 388246 Chicago, IL 60638 (312) 735-3408 (312) 327-3835 (fax) Mike Irvin, one of the founders of Jerry's Orphans, is involved in coordinating protests of the MDA telethon and welcomes anyone who wants to participate. Barbara Robertson Graduate Assistant, Project LEEDS (Leadership Education to Empower Disabled Students) University of Minnesota barbarar@disserv.stu.umn.edu (10) ===== neuromuscular group ========== >From : SueWilcox@aol.com Sender : "SueWilcox" Date : Sat, 13 Aug 94 19:51:28 EDT Subject: Fwd: Re: Consumer group Here is the info I got from the disability newsgroup about a network for those with neuromuscular diseases. --------------------- Forwarded message: Subj : Re: Consumer group Date : 94-08-12 15:37:09 EDT >From: an892@freenet.carleton.ca Thank you for expressing interest in my new consumer group for people with progressive neuromuscular disorders. COPE-NMD: Community Options for Persons with Nueromuscular Disorders has 5 main goals. 1) To provide information on community living issues such as housing, work, attedant support, education, recreation, social concerns, and health issues. 2) To advocate on behalf of our members for the creation of community living options where they are missing and determined needed by our members. 3) To establish a communication network among our members. 4) To assist our members in the definition, development and maintenance of strategies to enable them to reach goals they have set in the areas mentioned in Goal#1. To become a member of COPE-NMD please send a postcard with your name and address on it to: COPE-NMD c/o Luke Melchior 2400 Arbutus Rd Victoria, BC CANADA V8N 1V7 == end of als 118 ==