Date: Sat, 30 Dec 95 02:38:36 EST From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD234 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#234, 30 December 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 == == 1340+ 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 .. Radiotherapy for drooling 2 .. Talk With Others About Progressive Bulbar Palsy 3 .. support group attendance 4 .. ALS & Aloe Vera Juice 5 .. Troubles sleeping at night. 6 .. correction: University of Michigan Hospital 7 .. My Story 8 .. Interview with Genetech-CEO 9 .. "swallowing air" (1) ===== Radiotherapy for drooling ========== Date : Thu, 28 Dec 1995 11:12:28 -0600 (CST) >From : "Kathy Martin" Subject: Radiotherapy for drooling We are requesting any information from physicians, patients and/or health care givers regarding the treatment of radiotherapy for drooling. We appreciate the info from Aad Nienhuis on the exact dose that brother Hans Krotje used, and we will pass this info on to our doctors. Our basic questions at this time are: Is this treatment being used in the U.S. and to what degree of success? Does the treatment decrease saliva production so much that it causes problems with dry mouth? Or does this vary with the patient? Does the radiation affect the sinus cavities in any way? We are requesting this info for my mother who is 77 and has been diagnosed with bulbar-onset ALS since October 94. Thank you very much! Sincerely, Kathy Martin University of Illinois Office of Women in International Development 320 International Studies Building 910 South Fifth Street Champaign, IL 61820 Phone: 217-333-1994 Fax: 217-333-6270 (2) ===== Talk With Others About Progressive Bulbar Palsy ========== Date : Tue, 26 Dec 1995 23:32:44 -0500 >From : frankfather@cs.bgsu.edu (Cathy Frankfather) Subject: Talk With Others About Progressive Bulbar Palsy I am very interested in talking with anyone with Progressive Bulbar Palsy, or someone who has a loved one with this disease. My Mom has PBS and I have several questions. You can e-mail me at: frankfather@cs.bgsu.edu Thank You, Cathy (3) ===== support group attendance ========== Date : Wed, 27 Dec 1995 20:12:53 -0500 >From : Barb0062@aol.com Subject: Neuromuscular & ALS Center, Robert Wood Johnson Univ Hosital My name is Barbara A. Wike, MSW, LSW, a social worker at the Robert Wood Johnson University Hospital, New Brunswick, NJ. We have started a support group for ALS patients/caregivers which meets on the third Sunday of each month,2-4 pm, at the Medical School which is adjacent to the hospital. Thus far we have had a very poor turnout. We provide refreshments and have scheduled speakers but have been unable to get more than 6-8 participants. Patients are from the entire state of New Jersey. We need ideas which would encourage attendance at the meetings. Thank you. Barb0062@aol.com. (4) ===== ALS & Aloe Vera Juice ========== Date : 23 Dec 95 20:41:46 EST >From : WILLARD TODNEM <76264.536@compuserve.com> Subject: ALS & Aloe Vera Juice In ALSD 226 I asked for info. on Alternatives for ALS. I understand that at least 4 ALS patients have been taking Aloe Vera with significant benefit. I am going to be away until Jan. 5. & hope to be able to contact them to get details on their progress & how much, when, and with what they are taking it. I would like to hear from anyone who has taken, or has heard of anyone who has taken Aloe Vera for ALS. I am trying to verify the information below and hopefully learn more details & whether they know of any work with ALS patients. Linus Pauling Institute of Science and Medicine has done research on the beneficial effects of aloe vera on the digestive system. About five or more years ago Dr. Terry L. Pulse, M.D., of the Dallas/Fort Worth Medical Center, Texas conducted a study of 29 HIV positive patients to determine if improved nutrition would cause remission, regression, or a complete halt of the disease. Patients received a powdered nutritional supplementation, EFA (essential fatty acid) capsules, and Aloe Vera juice. The study lasted 180 days. By day 90 twenty seven of the patients showed significant improvements at various levels and by day 180 100 percent of the patients had improved at various levels. T-cell function was increased in some patients, a reduction in antigens was noted in others, while diarrhea and wasting was reversed in all patients presenting these symptoms I called today (Sat.) and there is no Dr. Pulse on the staff now. I am going to be away until Jan. 5 & will carry on when I get back. If anyone knows phone # or location for Dr. Pulse, Linus Pauling Institute of Science and Medicine or Texas A&M (which I assume is their Ag. school) it would be a big help. Will Todnem (5) ===== Troubles sleeping at night. ========== Date : Fri, 29 Dec 1995 13:18:52 -0800 (PST) >From : Wilson Subject: Troubles sleeping at night. Are there any other people with ALS who cannot sleep at night? Plus not sleeping, I suffer from tremors (shudders) in my legs and arms. I am currently trying Ativan, but am not getting any real relief. In the past, I have tried Zopiclone, Oxazepam and Melatonin. When I go to bed, I have no trouble falling asleep and for the first three or four hours I stay asleep. It is from then on, that I suffer the anxiety and tremors which cause the sleeplessness. I have seen a respiratory doctor. who has assured me that my lungs and breathing are normal. Only my arms and legs are affected. Has anyone found that a harder mattress helps? Please, any suggestions will be greatly appreciated! >From: Wilson Dunan (alias: Sleeplessness in Sidney!) Either answer through the digest or email me at wildun@oceanside.com (6) ===== correction: University of Michigan Hospital ========== >From : "Annemarie Schoennemann" Subject: Reply to ALSD232 ALS-ON-LINE Date : 19 DEC 1995 08:01 -00 > >Motor Neuron Disease Clinic >(James W. Albers, M.D.) >University of Michigan Hospital >Department of Neurology >1324/0322 Taubman Center >1500 E. Medical Center Drive >Ann Arbor, MI 48109-0322 >Tel: (313) 936-9020 >Fax: (313) 763-6545 > May I correct our phone number? You have us listed under Dr. James Albers at the University of Michigan Medical Center with phone as 313-936-9020. This is wrong. It is 313-936-9010. Thanks. (7) ===== My Story ========== Date : Wed, 6 Dec 1995 09:40:53 -0800 >From : kenstone@ix.netcom.com (Kenneth L. Stone ) Subject: ALS Digest Article December 1, 1995 I am a PALS of the sporadic type. My mother and father are still living in Provo, Utah. Dad is ninety-one and mother is eighty-seven. My Grandfather (Charles Stone) was born in Bridgend UK and moved to Llantrissant, Wales as a Boy. He began working in the mines at a very young age. He married my Grandmother (Mary Ann Jollow) in Pontypridd. He moved to Utah in 1898 and brought all the family there by 1900. The LDS Church in Salt Lake sent him to Raymond, Alberta, Canada as a missionary a few years later, but the mines (coal, diamond, silver, etc.) had already taken it's toll. He became a farmer in Canada but died in Salt Lake City at the young age of fifty-five in 1910. His diagnoses was "MINERS LUNG DISEASE." TRAUMA: This is the story of my life. It has been one continuing trauma after another. I was diagnosed with a bowel that would not secrete in the first two years of my life and given only ten months to live. This was between October 1939 and October 1941, but mother found a doctor who could cure it. This disease left a large brown spot (about 12 inches) on the right side of my stomach. I had an operation called stomach resection in 1964 at the age of twenty-five for a bleeding ulcer. The next six months produced a surgical hernia of the stomach muscles which just folded under, a Hemoroid Dectomy and anemia. I had plastic mesh connected to my stomach muscles in 1976. My doctors found a bursted vein in the first intestine connected to my stomach in 1984 and performed yet another stomach resection leaving me with only 25% of my stomach. This should have been enough to resolve any further stomach problems. I developed yet another surgical hernia within a couple of months. I began experiencing symptoms of pain and weakness in my wrists and hands in June of 1990. I thought it was "CORPORAL TUNNEL SYNDROME" and tried many things to correct the problem which included twenty dollar wrist braces for each hand. It was a hot day in July of 1993 and we were leaving the next morning for a vacation from our home in Independence, Missouri to Provo, Utah; to Grand Canyon; to Las Vegas; to Tulsa, Oklahoma; and return to Independence. I was trimming our hedges in the morning, but I could see a bad storm moving in from the southwest. I trimmed the hedges without a break (trying to beat the Storm). This was very dumb and I was sick (on vacation) for the next five days with Heat Exaustion. I promised the other 10 members of my family that I would see the family doctor upon our return. I was sitting in her examination room in August of 1993 and she exclaimed, "I don't think it has anything to do with Corporal Tunnel Syndrome, I think you have a pinched nerve." It was still curable at this point and she sent me to a Neurosurgeon at Providence St. Margaret Hospital in Kansas City, Kansas. It takes at least a month to get an appointment with anyone connected to neurology. I was in the neurosurgeon's office for an hour being tested and talking about classical music. He ask "Have you heard of ALS - Lou Gehrig's Disease?" I answered yes, but what I was yet to learn would become very depressing. The next neurologist took Catscans, MRIs, EMGs and Milagrams. She declared "I have absolute proof that you don't have ALS. We agreed that I would wait three months before making another appointment. This only lasted a week because at work my right hand cramped shut and I couldn't open it. I finally used the left hand (my worst hand) to get it open. I called the neurologist and she referred me to the neurological department at Kansas University Medical Center in Kansas City, Kansas. I received many more tests starting in December of 93. The first week of January of 94, the finest neurologist I will ever know could not find enough symptoms to reveal the disease. I returned in March of 1994 to KUMC to have an EMG from a very good neurology doctor and his nurse, which lasted almost three hours. He told me "It's either ALS or the immune system is attacking itself." I returned to my current neurologist on April 7, 1994. I will never be able to praise Arthur Dick, MD and his nurse Kathy Peters, RN enough to give them what they diserve. The four of us were in one of the examining rooms as they explained the diagnoses of Lou Gehrig's Disease to my wife Dorothy and myself. We could feel their compassion very deeply. I now attend the Muscular Dystrophy Clinic every three months and talk with Arthur and Kathy. My ALS has progressed slowly and has only affected my limbs and increased secretion of body liquids in my mouth. You would think that I had received enough trauma in my life at this point, but in July of 95 a cancer the size of a baseball was found in my stomach. I went into the Independence Regional Health Center for what was supposed to be a 23 hour testing period. They removed my entire stomach and the bowel and reformed four intestines into a stomach. I ended up in the hospital for almost two weeks. Ken Stone Internet: kenstone@ix.netcom.com (8) ===== Interview with Genetech-CEO ========== >From : "Max Romantschuk" Date : Sat, 28 Oct 1995 15:43:54 -0200 Subject: Interview with Genetech-CEO Referring to Per Dahlens response on Anthony E Oppenheimers request for comments from people who follow ALS. I am a 50 years old male who has ALS or something closely related to ALS. My symptoms are not typical, but there is no other diagnosis available. I have been subject to the best possible examination and care in this part of the world (Finland, Europe) so there is no reason for any complain or doubts. Some two years ago I realised that my symptoms; weakening right arm and loose of control of fingers, where not normal ageing. In late spring 1994 I was told by the experts that ALS was one of the remaining options. Since then I have been under the guidance of the best available experts in this particular disease. As I was informed of all the possible and also less likely reasons or rather affecting circumstances, from amalgam to magnetic fields and all possible thing in between, I decide 'to try them all'. So out with all amalgam. A selection odd antioxidants, vitamin C, B and E, selenium, ubiqinon, cod- liver oil every morning. No more glutamate. Vaccine against flu. Much more exercise etc. Less work and more 'out with the boys'. In other words every- thing possible that might a positive impact on body or mind. 'Many a little makes a mickle', they say and I am beginning to believe it corresponds to reality here too. My symptoms are there of course, but I at least myself believe the progress is much slower now than a year ago. I do not care if it is psychosomatic or not, as long as it seems to help. Then something else, which I find most interesting: I am sure that many of the subscribers, at least in Europe, are aware of something called 'Davos Seminars'. Davos is a town in Switzerland and all kind of prestigious seminars and meetings are arranged there. The organiza- tion behind this seminar publishes a magazine called WORLD LEADERS in 4(?) issues per year. In last summers issue there is an interview that I believe must interest the members of this rather 'specialised' audience: Mr G. Kirk Raab, President and CEO of Genetech Inc, San Francisco, California says "... but we are making tremendous progress in neurological diseases. I don't think by the turn of the century that we will have eliminated Alzheimer's. But we will have resolved Parkinson's, ALS, peripheral neuropathies ......" The quote is quite encouraging, don't you think. Best regards, Thomas Romantschuk (9) ===== "swallowing air" ========== Date : Fri, 24 Nov 95 15:50 EST >From : m2339@mail.alliance.net (MikeOrganek) Subject: "swallowing air" My father-in-law was diagnosed with ALS several years ago. He is still living alone with some assistance. He has a lot of stomach problems...he constantly burps while in an upright position so does nothing but lay and stare at the ceiling. He has been to many doctors who all say the same thing "he is swallowing air". We have tried for months to find a something or someone to help. We are interested in knowing if there are any other ALS patients who experience this problem and if they have found anything to help. Any information you might have would be appreciated. === end of als 234 === 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