Date: Mon, 18 Mar 96 03:18:50 EST From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD238 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#238, 17 March 1996) == == == == ------ 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 == == 1660+ 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 == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/alsig.htm == =============================================================== == A full set of back issues (on MSDOS 3.5 INCH HD diskette) == == are available by sending me your full mailing address. == == They are free-of-charge. International requests welcome. == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Editorial 2 .. ALS Awareness Conference 3 .. Chrysler with ramp 4 .. Satin Sheets 5 .. Ask the Experts Conference 6 .. Alternative healing - ALS 7 .. Vitamin E Helps Mice with Lou Gehrig's 8 .. Bulbo-Spinal Neuropathy 9 .. ALS Questions 10 . Scholarships 11 . home care experience (1) ===== Editorial ========== (A) I am very sorry about the distribution delays but now I think the technical problems have been solved. I hope so ... this is our first full-blown distribution test to the entire list of 1660+ subscribers. (B) As always, please remember that the editor is not a medical doctor, this is not a peer-reviewed publication, etc. but we do hope that it is useful to the world-wide ALS/MND community. Sincerely, Bob Broedel (2) ===== ALS Awareness Conference ========== >From : kathy.goeddel@bangate1.tek.com Date : Fri, 15 Mar 96 23:45:17 PST Subject: ALS Awarness Conference The Amyotrophic Lateral Sclerosis Center at Oregon Health Sciences University cordially invites you to attend our Second Annual ALS Awareness Conference Wednesday, May 15, 1996 4:30 p.m. Casey Eye Institute Oregon Health Sciences University 3375 S.W. Terwilliger Boulevard Portland, Oregon, USA Kathy (3) ===== Chrysler with ramp ========== Date : Sun, 17 Mar 1996 13:54:35 -0500 >From : Joemogul@aol.com Subject: Please post - Thanks. Pidgeon Do-- Will the person who mentioned a van by Chrysler with a ramp that enables the woman(pals) to enter & exit faster than pigeons do - please let me have your phone no. Murray LLYF48A@prodigy.com 1-800-294-6502 (4) ===== Satin Sheets ========== >From : "Thomas C. Jarvis & Laura Hawley" Subject: Satin Sheets Date : Thu, 14 Mar 1996 14:04:05 +0000 My husband was dx with als in January 1996. We have found satin sheets to be a tremendous help in enabling him to turn over and be comfortable in bed. We took a cruise of the western carribean in February. Our's was one of 20 wheelchairs on board. Room service is available 24 hours a day in your cabin and we found the ship "Carnival's Imagination" to be very handicap friendly. We can be reached at mooring@mail.ameritel.net. We live in a very remote area so the computer with als information access has been our lifeline. (5) ===== Ask the Experts conference on April 28 ========== Date : Wed, 13 Mar 1996 21:31:37 EST >From : LLBD81A@prodigy.com (DEBRA BULKELEY) Subject: Ask the Experts conference on April 28 The Massachusetts Chapter of the ALS Association is having its annual Ask the Experts Conference on Sunday, April 28, 1996 1-4 p.m. The Hilton at Dedham Place Dedham, Mass. The featured medical ALS experts will be: Robert H. Brown, Jr., M.D., D. Phil., director of the Cecil B. Day Laboratory for Neuromuscular Research, Massachusetts General Hospital, Boston. He is also an associate in Neurology, Massachusetts General Hospital and associate professor of neurology, Harvard Medical School. Merit Cudkowicz, M.D., is an instructor of neurology at Harvard Medical School, Massachusetts General Hospital. She is a clinical investigator whose research interests primarily include experimental therapeutics in ALS. David Hollander, M.D., is an attending physician at New England Medical Center, Boston, as well as director of the EMG/EP Laboratory at Whidden Memorial Hospital in Everett. He is an assistant professor of neurology at Tufts University, as well as a research associate in the department of pharmacology at the university. James A. Russell, D.O., is a staff neurologist at Lahey Hitchcock Clinic in Burlington, as well as a clinical assistant in the department of neurology at Children's Hospital, Boston. He is director of the EMG laboratory at the Lahey Clinic Medical Center, and is director of the EMG and Neuromuscular Fellowship Program at the Lahey Clinic. Larry Powe, M.D., is acting group director, NeuroEndocrine, Rhone- Poulenc Rorer Research & Development, Collegeville, Penn. He will discuss Rilutek, the first drug to receive FDA approval to treat ALS. This free seminar is for patients and their families, caregivers, and anyone interested in ALS research. Speakers will discuss topics that include current drugs in clinical trials and trends in current and future ALS research. Attendees will have an opportunity to ask questions during the "Question and Answer" segment of the program. (Refreshments will be served.) People may register to attend by calling the Chapter office, 617-245- 2133 or 800-258-3323 by APRIL 19. We will be making special seating arrangements for people with wheelchairs. Also, please let us know if you will need use of a wheelchair for the conference. Directions to the Hilton at Dedham Place: >From Logan International Airport: Take the Sumner Tunnel to I-93 South (Southeast Expressway) to I-95 North (Route 128 North) to Exit 14. Then take a right on Allied Drive. >From Boston: Take I-93 South (Southeast Expressway) to I-95 North (Route 128 North) to Exit 14. Then take a right on Allied Drive. >From Cape Cod: Take Route 3 North to Route 128 North (which becomes I- 95N) to Exit 14. Then take a right onto Allied Drive. >From the North: Take I-95 South (Route 128 South) to Exit 14. Then take a right on Allied Drive. >From the South: Take I-95 North, and exit onto Route 128 North to Exit 14. Then take a right onto Allied Drive. >From the West: Take the Massachusetts Turnpike to I-95 South (Route 128 South) to Exit 14. Then take a right on Allied Drive. If you have any questions, please call the Massachusetts Chapter Office, 617-245-2133 or 800-258-3323. (6) ===== Alternative healing - ALS ========== Date : Sun, 17 Mar 1996 14:34:50 -0800 (PST) >From : perryw@pinc.com (Perry Y.Woods) Subject: Alternative healing - ALS My mother, Marjorie Woods was diagnosed with ALS on February 15th 1996. Prior to that date, she had showed symptoms of the disease since November 1994, following dental work to replace some Mercury amalgam fillings in her lower jaw. Her symptoms are solely "Bulbar" and cause her difficulty with swallowing and speech. Following a visit to Dr. Andrew Eisen of the ALS clinic in Vancouver General Hospital (BC, CANADA), for a confirmation of the initial diagnosis, my mother was encouraged to participate in the Riluzole test group. After weighing the pros and cons of the drug treatment, she elected to remain solely with the present treatment which is a natural drug-free therapy using nutritional and herbal elements and anti-oxidants. The composition of her program is to long to list here, but contains a very well balanced nutritional program including essential proteins, vitamins, minerals, trace elements, omega3 fatty acids, fibre, friendly flora bacteria, herbal aloe vera containing active enzymes plus an extensive list of herbs known for their healing, detoxifying and cleansing proerties. Essential to this process of healing is healthy villi ( the tiny, finger-like protrusions of the intestine which absorb the nutrients into the bloodstream ) which assist in transmitting the nutrients to the cells of the body. Since atrophy of muscles is a factor symptomatic of ALS, my mother is also on a program of isometric exercise to minimize atrophy of her facial/speech muscles. The power of laughter to heal by the release of healing endorphens is well known, and both my mother and I joke and laugh about the disease which helps avoid the morbid attitude which some people have about ALS. In the couple of weeks since she has begun this program, her general health and vitality have improved measurably. At present, it is too early to identify any changes to her speech or swallowing, but we have high hopes of influencing these. I welcome positive comments or constructive discussion on our methods of treating this Goliath of a disease. Perry Woods perryw@pinc.com Victoria, BC. Canada fax:(604)477-6262 (7) ===== Vitamin E Helps Mice with Lou Gehrig's ========== UPI DOMESTIC NEWS WIRE Wednesday January 31, 1996 VITAMIN E HELPS MICE WITH LOU GEHRIG'S CHICAGO (UPI) -- Researchers Wednesday announced the first animal evidence that vitamin E may slow the progression of Lou Gehrig's disease, which affects 30,000 Americans. The investigators found that the antioxidant slows muscle wasting in the early stages of the disease in mice with a genetic defect for a familial form of the disease, formally called amyotrophic lateral sclerosis, or ALS. Reporting in the journal Annals of Neurology, the researchers also noted some benefit from the antioxidant selenium and said two other drugs, riluzole and gabapentin, appear to prolong survival in later stages of the progressive disease that killed the baseball great Gehrig. < parts deleted > ``We've entered a watershed period of progress in the battle against ALS,'' said Donald Wood, director of science technology at the Muscular Dystrophy Association in Tucson, Ariz., which funded the research. < parts deleted > The study, using the first mouse model for a neurodegenerative disease, was conducted by researchers at Northwestern University near Chicago and Pharmacia Upjohn in Kalamazoo, Mich. ``Evidence that these drugs may slow progression of ALS underscores the real potential of this first-of-its kind mouse model that can yield reliable data on possible ALS treatments in as little as six months,'' Wood said. ``Some 20 additional compounds are being tested singularly or as combinations, and these studies will help accelerate delivery of major health benefits to people affected by ALS.'' Lead study author Mark Gurney, who developed the mouse model in 1994, said his study underscores the value of using transgenic mice to speed the search for ALS drugs. ``It also shows that ALS has two distinct phases, each of which might be treatable by a specific type of drug,'' he said. ``Nerve cells are 'silently' damaged by the renegade SOD1 enzyme, made vulnerable to lethal damage from normal nervous system chemicals, such as glutamate, in phase one of the disease. In phase two, chemicals, such as glutamate affect cells differently from the way they normally would, leading to cell death.'' The results will likely apply to all forms of the disease, not just the rare genetic type, Gurney said. Selenium can be neurotoxic so patients should not take the antioxidant without a doctor's close supervision, Gurney said. The U.S. Food and Drug Administration approved the first ALS prescription drug, riluzole -- brand name Rilutek -- in December. In human studies, those who took the drug had slightly longer survival than those who did not. Riluzole partially blocks release of the chemical glutamate from nerve cells. Gabapentin -- brand name Neurontin -- approved for use in epilepsy and being tested for ALS use, appears to partially block the body's manufacture of glutamate. Clinical trials are testing vitamin E and other antioxidants. In the meantime, many doctors are recommending their ALS patients take vitamin E. (Written by UPI Science Writer Lidia Wasowicz in San Francisco) (8) ===== Bulbo-Spinal Neuropathy ========== >From : arvin@acn.purdue.edu (Leslie Arvin) Subject: Bulbospinal Neuropathy Date : Fri, 16 Feb 1996 13:09:33 -0500 (EST) Bulbo-Spinal Neuropathy (Kennedy's Syndrome) -------------------------------------------- Does anyone know anything about this genetic disease? My uncle (maternal) was recently diagnosed with this illness and since it is very rare he has had difficulty finding information about it. Even his doctor cannot answer many of his questions. It is a X-linked mutation with "CAG repeats in Androgen Receptor; Xq12; Recessive" which, I believe, is close to the same genetic sequence which causes ALS. In fact, my maternal grandmother and a cousin of hers passed away from ALS. The symptoms are similar, though Kennedy's syndrome usually does not shorten life. Because Kennedy's syndrome has some similarities to ALS, I was hoping someone in this group might direct me to information that might be related to this disease. The information I've found so far, usually mentions ALS in just about the same breath as Kennedy's syndrome. I would also appreciate if someone who has or someone who knows someone who has this disease would be willing to provide information and answer some questions about what to expect. I am not a doctor nor a geneticist, but I am fortunate in that my father and brother are doctors so can translate medical information for me, and I have a sister who has studied genetics in college so can translate some of the "gene stuff". I have easy access to the Internet. Please send replies to my email address: arvin@acn.purdue.edu Thank you. -- Leslie Arvin Application Programmer Agricultural Computer Network (9) ===== ALS Questions ========== Date : Fri, 23 Feb 96 09:02:25 EST >From : rapappas@sherwin.com Subject: ALS Questions I would like to ask other subscribers if they have any information or experience with HORVIMS9, which is actually snake venom as it relates to treatment of ALS patients, and where is it available. Also, does anyone have any information on AVONEX, COPOXIN, or INTERLOCKEN 4. These are drugs used on MS patients that may also be effective on ALS symptoms. I would appreciate any information. Thank you, Roseann Pappas rap@sherwin.com (10) ===== Scholarships ========== Date : Mon, 15 Jan 1996 12:14:21 -0800 >From : tojak@olympus.net (Jackie Lampson) Subject: Scholarships Are there any grants or scholarships given thru the ALS organization or related agencies? My Grandson (his father had ALS) will be starting college (if he can manage financially) in the Fall and will be in great need of financial assistance. I would appreciate any information or assistance in finding information that you can give me. Thanks so much! Jackie Lampson Sequim, Wa. tojak@olympus.net (11) ===== home care experiences ========== Date : Wed, 13 Mar 1996 09:44:10 -0500 >From : Lauren Shockley My name is Lauren Shockley, I am the Clinical Nurse Specialist for the ALS center at the Cleveland Clinic Foundation. I am currently doing a research project based on the home care experiences of ALS patients. I would love to hear from those of you with home care or hospice. Please reply (privately if you would like) with your home care experience. Key issues include: How many hours per day or days per week do you receive care? Who actually provides the care? (RN, aide, Therapist) What type of care or services do they provide for you? (bathing, laundry, cooking, cleaning, etc) What services would you like them to provide that they currently do not? Was it difficult getting insurance to cover the service? How much out of pocket expense do you encounter? At what point in the illness did you realize that home care was necessary? I can't wait to hear from you! Lauren E-mail: Shockll@cesmtp.ccf.org === end of als 238 === ALS Association (National Office) 21021 Ventura Boulevard, Suite 321 Woodland Hills, CA 91364 USA TEL 818-340-7500 FAX 818-340-2060 TEL 800-782-4747 (Patient Hot Line) E-M eajc27b@prodigy.com ALS Society of Canada 220 - 6 Adelaide Street East Toronto, Ontario, M5C 1H6 CANADA TEL 416-362-0269 TEL 800-267-4ALS (toll-free in Canada) FAX 416-362-0414 E-M alssoc@inforamp.net