Date: Sun, 26 Nov 95 21:59:36 EST From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD226 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#226, 27 November 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 == == 1250+ 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: We Are International! 2 .. Familial ALS rate of occurrence 3 .. Christmas gift 4 .. CBS ALS Show 5 .. general fatigue 6 .. a letter 7 .. re: trauma & ALS 8 .. myotrophin 9 .. ALS - injury/insult and other factors...SURVEY 10 . Anxiety and discomfort 11 . Call switch 12 . PBD 13 . sleeping problems due to thick saliva 14 . Alternative treatments (1) ===== Editorial: We Are International! ========== The following countries are represented here on ALS-ON-LINE: Argentina, Armenia, Austria, Australia, Belgium, Bermuda, Brazil, Canada, China, Finland, France, Germany, Guam, Greece, Hungary, Iceland, India, Iran, Ireland, Israel, Italy, Japan, Korea (South), Luxembourg, Malaysia, Mexico, Monaco, Netherlands, New Zealand, Norway, Peru, Poland, Portugal, South Africa, Spain, Sweden, Switzerland, Turkey, United Kingdom, United States of America. Please let me know if I have missed anyone. rgds,bro (2) ===== Familial ALS rate of occurrence ========== >From : tabco@acy.digex.net Date : Sun, 26 Nov 95 00:31:24 PST Subject: Familial ALS rate of occurrence Being in a family that has had 3 members diagnosed with ALS (one still living), we are filled with many questions on the probablility of ourselves and our children being afflicted. Please forward to me any information that gives an incidence rate for someone to contract ALS if their family has had several cases of ALS. I am also interested in information on the genetic marker on chromosone 21, and if people could be tested for this marker before they are diagnosed with ALS. This information could be used in the determination of whether or not a person (who is in a family with multiple ALS members) might want to become a parent. Also, since hyperparathyroidism causes an ALS-like syndrome, and it happens to be one of my medical problems, information on their similarities, differences and possible links would also be of great interest. Thanks in advance for your help. Thomas ----------------------------\ tabco@acy.digex.net > 00:52:00 11/26/95 ----------------------------/ (3) ===== Christmas gift ========== Date : Sat, 25 Nov 95 22:07:35 -0800 >From : Carl Hubscher Subject: Comment My brother-in-law is 43 yrs old and has ALS. Maybe some of you can help me. What do you buy someone for Christmas that is suffering from ALS. I thought of an idea earlier today while traveling back from spending Thanksgiving holiday with him. How about having people such as other ALS patients and caregivers send my brother-in-law Christmas Cards from around the world. What do you think of the idea. If this seems like a good idea my brother-in-law's name and address is: === = Dennis Berned = 1441 Holeman-Ashley Road = Timberlake, NC 27583 USA === Sincerely, Carl Hubscher (4) ===== CBS ALS Show ========== Date : 25 Nov 95 12:38:26 EST >From : KENT LEE WOODMAN <71043.2035@compuserve.com> Subject: CBS ALS Show For those who missed the CBS Good Morning special broadcast of the ALS story broadcast between 8 and 9 AM on 06 October 1995, you can do as I did and contact CBS for a copy. I do not know the cost, but the VHS tape is available through CBS News, Attn: Neil Waldman, Director of Sales & Licensing, CBS NEWS Archives, 524 West 57th Street, NY 10019 TEL (212) 975-2875, FAX (212) 975-5442. By the time I saw the alert here in our ALS interest group report, it had just been aired, and it has taken some time to track it down. This particular program is NOT part of the regular system where you can call an "800" number and obtain a transcript or tape. cheers from Alaska! -klw- (5) ===== general fatigue ========== Date : Thu, 23 Nov 1995 23:30:11 -0500 (EST) >From : janet e ackland Subject: general fatigue My father has ALS. He has always required more sleep than anyone else in our family. In the 5 months since he has been diagnosed, he has required more and more sleep. His is on medication (BDFN). I am just wondering if this is in sync with the disease, I guess... is it common. Thanks, Janet (6) ===== a letter ========== >From : "John Millar" (Australia) Date : Fri, 24 Nov 1995 12:17:24 EST-10 Subject: LETTER FOR NEXT DIGEST ? Letter to the ALS Interest Group on Internet Dear PALS I am a 49 year old male academic physicist who has been diagnosed with MND (or ALS about three months ago August/Sept 1995), and I have been reading the very useful notes from the ALS Interest Group ever since I found out about it. I have tried to contact some individuals but without success and I felt I would like to write to the group as a whole. I would like to apologise to those for whom the contact was unwanted (as the info came from digests which are old) and say thank you very much to those who have replied. I am still in the process of seeking information about my disease, so please forgive me for asking old questions. The first real indication to me of a serious problem was after I had been skiing with my daughter in July this year (there's snow here at that time!) and found that I could not do it the way I was accustomed to: my muscle control, particularly of the left foot and ankle was distinctly poor and I had severely reduced strength in my upper legs. I had noticed this when I was bike riding with friends in the hills south of San Francisco in May of this year, but put it down to my lack of fitness. I had also noticed (but family and close friends had not) a tendency to slur some words. By September, the disease had developed to a point where I decided to step aside as Chairman of the department since I could not speak without slurring and then only for a few sentences at a time. I have begun to make weekly measurements of weight, calf diameter, left and right hand grip strength and breath strength (spirometer) but these seem to be inaccurate, and insensitive to the change which continues to occur at a rapid rate. They appear NOT to reflect what I feel, that is, my strength decrease is quite great. I am currently on a trial for the Rhone-Poulenc-Rorer drug "Riluzole" and the only published data I have been able to find suggests this extends time by a few months. I have also been taking amino acids (L-leucine, iso leucine, L-valine, folic acid), Vit E and Vit C, and a co-enzyme which is a radical scavenger. No-one can (is willing to) predict how long I have, and the data so far are too few to make any projections . Reading the histories on the Net leads me to believe that my disease is progressing very rapidly compared to many. ****************************************************************** I would be very interested in histories to attempt to determine how long I have at a functional level, and any suggestions of parameters that can be measured for better sensitivity to progression of the disease. Are any of the other drugs mentioned (myotrophin, neurontin, BDNF, CNTF, GDNF, progesterone, eldepryl,.....I am compiling a list of references to these, anything I can find written about ALS) of any use, or are people taking multiple treatments ?? ****************************************************************** At the moment, I am physically still reasonable with the worst effects in my left foot and leg, and speech and swallowing. I can still walk but I have now a walking stick as I have fallen four times. I can still drive a manual or automatic car, but climbing stairs is very difficult, and an estimate of my strength is that I can no longer lift a full bottle of wine with arm outstretched. It is also very difficult now to hold a razor to shave and a brush to do my hair. I can actually ride my bicycle now better than I can walk, and I plan to go on the Great Victorian Bike Ride in December (about 550 km or 350 miles over 9 days) if I can make it. It is hard to believe that I went for two wonderful rides in the hills south of SFO just a few months ago, and for about 50 miles round trip down near Monterey on that beautiful California coast, but I can now understand why I felt it was so hard, and I was so slow on the hills. I do ride as often as I can and we are very lucky with the bike paths that are available in Melbourne and very close to home for me. ****************************************************************** Is such exercise as bike riding which can be very gentle regarded as good or bad ??? Is very hard exercise, pushing flat out on a bicycle in hilly country, for example, a good or bad thing ??? Does exercise assist in retaining muscle strength or exacerbate the loss ? ****************************************************************** I am still reading the book MOTOR NEURON DISEASE, edited by A.C. Williams (1994, Chapman & Hall) and this seems to have a very full account of quite current work and knowledge. Has anyone out there had any SIGNIFICANT change in the way they feel their downward slide is going as a result of any treatment, medical, physical or psychological ?? I cannot tell if the stuff I am taking has ANY effect at all. There appear to be no noticeable side effects, and I intend to continue. I do have another (associated ? ) problem which makes life an absolute misery and I would ask if any one can help, please contact me directly by phone fax or email. All of this year following a reconstruction of a broken molar tooth in February with a very LARGE amalgam (a grey/black metal mixture commonly used for fillings) filling, I have had lesions on my tongue which present almost as ulcers but are not cured by any of the ulcer treatments. The lesions have been on the side close to, and in direct contact with the large amalgam reconstruction. My dentist suggested abrasion as a result of the tongue forcing itself between the teeth, and has built up the lower molar with polymer ("ceramic") material. This has helped and reduced the problem by a very slight amount, but it is still essentially the same. I believed that the lesions which sometimes cause continual minor bleeding, were due somehow to the contact between the tongue and the amalgam material, which is rougher than the polymer filling material, but there is a smaller one which appears at random but about every two weeks, on the tip of my tongue. ****************************************************************** I anyone has experienced similar, due to increasing incompetence of the tongue mucsles, and has found some treatment which is of assistance, I would be very grateful for advice. At the moment this is worse than the day-to-day effects of ALS. ****************************************************************** Melbourne and Victoria has a very active support for ALS/MND and I have been in contact with them. I am currently reading through the ALS digest on disk sent by Bob Broedel (do people mind direct personal contact ??), and I wish to thank him for his great work in maintaining this forum. I look forward to contact with many people in the future, for as long as I can, and will report on anything which may help. Please excuse my dumb questions as I am still very new at this. Good luck to all, and let's hope that the research work brings results as fast as possible With optimism and cheers from jjm Professor John J. Millar, PhD Department of Applied Physics and Electron Microscope Unit RMIT, GPO Box 2476V, MELBOURNE AUSTRALIA 3001 +613 9660 2602 fax 613 9660 5290 email jjmill@rmit.edu.au (7) ===== re: trauma & ALS ========== >From: "Silby, John" Date : Sun, 19 Nov 95 21:40:00 CST I was diagnosed as having motor neurone disease in 1988. The ALS newsletter is of great interest to me as it is my only source of information on this disease. Like some of your other readers, I was diagnosed about twelve months after an operation in which there were apparently some problems coming out of the anaesthetic. I have been told by a doctor that trauma can trigger this type of condition. A book by Dr. Carl Symonton, "Getting Well Again" has helped me to come to terms with the condition. Does anyone have information on paraprotein testing and Latov's anti neuronal antibody? (8) ===== myotrophin ========== Date : Wed, 15 Nov 1995 14:37:18 -0500 >From : MRSLCM@aol.com Subject: Re: ALSD223 ALS-ON-LINE I am concerned about Cephalon's mortality data and I was hoping smeone might be able to shed some light. In the European trial, 5/59 (7%) patient's on placebo died and 18/124 (16%) patient's on drug died. I think this indicates that twice as many people on drug died as compared to the placebo. Previously, the company said there was a mortality benefit. It looks to me like the drug might actually be killing people. Please let me know what you have heard. (9) ===== ALS - injury/insult and other factors...SURVEY ========== Date : Mon, 13 Nov 1995 22:09:20 +0000 >From : killeen@iol.ie (Steve Killeen) Subject: ALS - injury/insult and other factors...SURVEY Finding the digest wonderful. Article on digest 222 by Andy Furley was most interesting. Has anybody (medicos or scientists or otherwise) ever carried out a broad survey regarding this aspect. The more I read the digest and talk to people, the more I discover odd links to onset of ALS. I would be willing to collect data on ALSers (very general, as I am an engineer), and set up a database using MS Access, and try to look for some patterns. The data should probably include: Name or ID State or County Country Date of Birth/Death Date of diagnosis Serious Illnesses/Dates ( Accidents/Dates (Treatments Operations/dates ( Vaccinations/Dates Smoker/Drinker Environmental Factors - exposure to Fumes for long periods etc. Personality -Layback/Worrier Lifestyle - Active/Couch Potato This idea may be totally off the wall, but I'm willing to give it a whirl. Any ideas or suggestions on on how to simplify rather than complicate the database would be welcome..I'm a two fingered typist.When I get some responses, I will proceed. Regards, Steve Killeen (10) ===== Anxiety and discomfort ========== Date : Mon, 20 Nov 1995 09:24:44 -0500 >From : Denise Simons-Morton Subject: For ALS Digest: Anxiety and discomfort My father, aged 69, was diagnosed with ALS in January. It began with foot drop and lower limb weakness, and has progressed rather rapidly so that today he cannot move his legs at all, his arms are getting weaker daily, and he has trouble clearing mucus and swallowing. Two of his major problems now are anxiety attacks and discomfort. He can never seem to get comfortable, no matter how we move him or arrange his bed, clothes, or covers. And he has daily anxiety attacks, perhaps because of the loss of control over his own body. Does anybody have any suggestions for dealing with these problems? We have tried deep breathing for the anxiety attacks, which helps some, but not enough. Perhaps there are some medications that people have used that may help him. Or other suggestions. Thanks. (internet:dsm@nih.gov) (11) ===== Call switch ========== Date : 09 Nov 95 17:17:46 EST >From : Mike Ward <72567.400@compuserve.com> Subject: Call switch I have just found a call switch that is very easy to use. I am almost totally paralyzed from ALS and must find a way to call my nurse at night. For years I have used a Tash pillow switch. It was difficult to get positioned and it easily would move out of position so I could not reach it. Recently my nurse found another switch that works very well. It is easy to place, easy to use and is a much better solution. It can be ordered with a buzzer box so you can have noise. It also works with hospital call systems so you can take it with you if you end up in a hospital, god forbid! I use an X-10 transmitter to send the signal to a chime module in my home. But their buzzer box works fine if you do not want to design your own call system. It is called the E Z Call and the alarm is the PA-1 Portable Alarm. All this is available from MED LABS, 28 Vereda Cordillera, Goleta, CA 93117. (800) 968-2486. The EZ Call is $48.50 and the PA-1 is $39. Enjoy! Mike (12) ===== PBD ========== Date : 19 Nov 95 23:12:56 EST >From : Peter Strugatz <73523.151@compuserve.com> Subject: PBD DOES ANYONE KNOW ANYTHING ABOUT A NEUROLOGICAL DISEASE CALLED PBD (poly- glucosan body disease)? IT IS NOT COMMON AND IS SAID TO BE LIKE ALS OR PLS. (13) ===== sleeping problems due to thick saliva ========== >From : kathy.goeddel@bangate1.TEK.COM Date : Mon, 13 Nov 95 21:49:08 PST Subject: Any suggestions for sleeping problems due to thick saliva? One of my friends with ALS is having trouble sleeping at night due to thick saliva. Have any of you found something to help with this problem? Thanks in advance for the help. Kathy Kathy.Goeddel@tek.com (14) ===== Alternative treatments ========== Date : 19 Nov 95 21:13:10 EST >From : WILLARD TODNEM <76264.536@compuserve.com> Subject: Alternative treatments If anyone has had experience, good or bad, with EDTA (Ethylene Diamine Tetraacetic Acid) IV chelation as a treatment for anything and especially for ALS? I would very much appreciate hearing whether or not there was benefit. It appears that vitamin E is considered a desirable supplement for ALS along with beta carotene and vitamin C. I understand that some "incurable" diseases have been successfully treated with mega doses, of vitamin E, ranging from 4,800 to as high as 16,000 I.U./day. Anybody know more about: Whether any research is being done with ALS? Sources of information on medical uses of vit A. Side effects. Anybody had any experience with A.R.E. (Association for Research & Enlightenment), or read the book THERE IS A RIVER by Herbert Bailey about Edgar Cayce? David Atkinson in NC has had a very high degree of success with this most unconventional treatment. Are there others who have had good or bad results with it? At age 80 I seem to be ineligible for any of the drug trials. Except as noted above I am in good health. I would love to see an effective treatment become available to me but in the meantime I am searching for alternatives. Any help would be greatly appreciated. Will Todnem (360) 452-6038 E-mail or 11318 W. 4th St. Port Angeles, WA 98363 === end of als 226 ===