Date: Fri, 19 Jan 96 00:44:29 EST From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD236 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#236, 18 January 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 == == 1400+ 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 .. New ALS Clinic WWW pages 2 .. Neuropathology Congress 97 3 .. Rilutek 4 .. re: ALS treated with radiation 5 .. ALS Web site additions 6 .. Alternative treatments for ALS 7 .. 1 DAY AT A TIME 8 .. Call For Votes: creation of newsgroup sci.med.diseases.als 9 .. allergy studies and ALS? 10 . Should I be worried? 11 . re: DHEA 12 . Dr. Livingston's "ALS Guide" in Spanish. (1) ===== New ALS Clinic WWW pages ========== Date : Wed, 17 Jan 1996 14:28:25 -0600 >From : lannyh@bcm.tmc.edu (Lanny J. Haverkamp, Ph.D.) Subject: New ALS Clinic WWW pages We would like to make you aware that the MDA/ALS Clinic at Baylor College of Medicine has posted a recently acquired home page at the URL: http://www.bcm.tmc.edu/neurol/struct/als/als1.html. If you could make known our World Wide Web address to the wide range of subscribers to your discussion list on ALS on the internet. We hope to be providing information of interest and use to ALS patients and family members at this site and welcome as many visitors to the pages as care to view them. -------------------------------------------------------------------------- ------------------- Lanny J. Haverkamp, Ph.D. phone: 713-798-6900 Assistant Professor fax: 713-798-3771 Dept. of Neurology Baylor College of Medicine One Baylor Plaza Houston, TX 77030 (2) ===== Neuropathology Congress 97 ========== Date : Wed, 17 Jan 1996 11:20:43 +0800 >From : btizard@uniwa.uwa.edu.au (Brett Tizard) Subject: Neuropathology Congress 97 We are hosting the XIIIth International Congress of Neuropathology in Perth Western Australia, September 7-12 1997. The Congress will be of interest to Neurobiologists, Neurologists and Neuropathologists. It will integrate the latest developments and molecular pathology of a variety of neurological/neuropathological disorders including ALS. For further information, set your web browser to: http://www.uwa.edu.au/cyllene/icnpth97 ------------------------------------------------------------------ Brett Tizard Ph: (619) 224 3137 Scientific Officer Fax:(619) 224 2556 btizard@uniwa.uwa.edu.au Australian Neuromuscular Research Institute, QEII Medical Centre Department of Neuropathology, Royal Perth Hospital Perth, Western Australia We are hosting the XIIIth International Congress of Neuropathology For more information: http://www.uwa.edu.au/cyllene/icnpth97/ ------------------------------------------------------------------ (3) ===== Rilutek ========== Date : Sat, 13 Jan 1996 12:33:05 EST >From : TASM76A@prodigy.com (MR TED HEINE) Subject: Rilutek Rilutek. A very important point that did not surface during this week's announcements: In the clinical trials Rilutek showed benefit only after patients had been taking it for six months. This means that ALS victims who begin Rilutek now should not expect to benefit from the drug until June or July. Further, benefit is measured only in extended life expectancy. For that to be true, it means that Rilutek only slows the disease; it does not stop and certainly does not reverse the effect of ALS. Rilutek is a first step, and a critically important one, in fighting ALS. No patient should be disappointed when no benefit is detected immediately, but should continue the drug indefinitely. The quest moves ahead... Ted Heine in Waverly, Iowa (4) ===== re: ALS treated with radiation ========== Date : Tue, 2 Jan 1996 20:27:06 -0500 >From : DEYEJ@aol.com Subject: Re: ALS treated with radiation In answer to the recent inquiry, 28 Dec 1995, concerning the treatment of ALS induced drooling with radiation we offer the following information. We were recently contacted by the family of an ALS patient who was troubled by the inability to handle saliva. They had learned of groups in England and the Netherlands who had used radiation therapy to decrease salivary production in similar ALS patients. Patients who are treated with radiation therapy for cancers of the mouth and throat often experience permanent mouth dryness as an undesirable side effect of the treatment, because of radiation damage to the parotid glands. It seems reasonable that this side effect might be exploited to the advantage of patients with excessive salivation. We met with the patient and his family and fully explained the empirical and experimental nature of the treatment, the process and expectations, and the possble side effects (temporary local reddening, temporary swelling and discomfort of the parotid gland, temporary sore throat) as well as the fact that we could not promise any benefit. We felt that there were no long-term risks of consequence. Consent for treatment was given. After reviewing the scanty available information, we chose to treat each parotid gland using a 12 MeV electron beam from one of our linear accelerators to deliver a dose of 14 Gy to the 90 percent isodose line at a depth of 3.9 cm, in two fractions of 7 Gy each, three days apart. For simplicity, we used an 8 cm circular field, centered on the parotid, with a small block over the external auditory meatus. The patient experienced mild, transient parotitis after each fraction. There was prompt reduction in the volume of saliva after the first fraction, but a few days later, salivation had returned to normal. Then there was a slow decline in salivation until, after 2-3 weeks, the patient felt that he had had major improvement. Unfortunately, we are unable to offer long-term followup since he died of complications following unrelated minor surgery. We believe this approach has merit in the treatment of ALS patients who are distressed by inability to handle secretions. In cancer patients, reduced salivation is essentially a permanent condition. The lesser dose used here might mean a resumption of salivation with time. If so, a second treatment should be tolerated without difficulty. We are currently planning to treat a second patient, and will report results when appropriate. Glenn Tonnesen, MD, radiation oncologist James Deye, Ph.D., medical physicist Fairfax Hospital, Falls Church, VA 22046 e-mail: deyej@aol.com (5) ===== ALS Web site additions ========== Date : Thu, 04 Jan 1996 18:06:09 >From : Stuart.Neilson@brunel.ac.uk (hssrsdn) Subject: ALS Web site additions Dear Digest Readers, There are two new additions to the ALS Web site at the CSHSD. Firstly, and thanks kindly to Dr D. Eric Livingston MD, is a patient's guide to ALS (previously submitted to the Digest in full, and also available from a US Web site, listed with Part 1) - the Web version of the document will be updated and will hopefully contain current drug therapy and other research information, as well as new sections in due course. Secondly, and thanks to many contributors to past editions of the Digest, a first draft of a guide to communication equipment. This is a summary of the many devices, software, hardware, people, organisations and books mentioned by Digest contributors. I would really appreciate help in extending this guide (I can't do it alone!), so please have a read and submit updates, corrections and further information. Both additions can be found on the ALS resource page at: http://http2.brunel.ac.uk:8080/~hssrsdn/alsig/als_rsrc.htm Best wishes for the New Year, Stuart Neilson, CSHSD, Brunel University. (6) ===== Alternative treatments for ALS ========== Date : Wed, 03 Jan 96 13:39:50 EST >From : Gary Miedema <3GRM9@QUCDN.QueensU.CA> Subject: Alternative treatments for ALS My father, Sam Miedema, is approaching the end of his second year after being diagnosed with ALS. My mother has been searching diligently for any signs of hopeful cures from the both alternative and mainstream medical sources. She is very discerning, and carefully checks out each option that may sound feasible. Few have turned out to be very promising. Recently, we have been told by relatives of a Dr. Isaiah Castillo in Mexico who is using alternative medicine to tackle a host of different diseases and disorders. My parents have contacted him personally, and in that conver- sation he told them that he had worked with 10 ALS patients who had experienced some positive results. I would like to ask any readers of the ALS Digest if they have recieved treat from this individual or know of anyone who has. I would also be interested in hearing from anyone who has also looked into the use of herbal megavitamins, or who knows anything about "Live Cell Therapy." Buyer beware is an important motto in the medical and alternative medical world. Any information that anyone would like to offer to me will be most appreciated. Sincerely, Gary Miedema 3grm9@QUCDN.Queensu.ca (7) ===== 1 DAY AT A TIME ========== Date : Thu, 18 Jan 1996 18:11:52 -0600 >From : "Ben L. Jess" Subject: 1 DAY AT A TIME Hi from Clinton, Iowa - We are very new to the internet, so bare with us. My husband, Ben, was diagnosed with A.L.S. in 1991 at the age of 33. He does not have use of his hands and can stand for a little bit with assistance but uses an electric wheelchair to get around. We are fortunate enough to be able to attend our sons, ages 13, 15 & 17 yrs old, basketball games. The games are a great "diversion", (but I feel sorry for those refs I yell at) Right now there is someone with Ben all the time. I am currently working full-time and was wondering if their are any spouses who are in the same situation who would like to correspond, via the internet. Also, if anyone has kids that are our kids ages who would like to e-mail, maybe for a little support? We can be contacted at benjess@sparrow.sanasys.com We try to take a day at a time. Kids are: Eric age 13, Chris age 15 and Curt 17. Also, are there any firemen out there who have this awful disease. Before ALS struck Ben was a member of the local Fire Dept. and an avid weight lifter. Thanks for listening, Karen J. (8) ===== Call For Votes: creation of newsgroup sci.med.diseases.als ========= Date : Mon, 15 Jan 1996 21:19:48 GMT >From : david.bostwick@chemistry.gatech.edu (David Bostwick) Newsgroups: news.announce.newgroups, news.groups, bionet.neuroscience, : bionet.prof-society.cfbs, sci.med, sci.research Subject : CFV: sci.med.diseases.als FIRST CALL FOR VOTES (of 2) unmoderated group sci.med.diseases.als Newsgroups line: sci.med.diseases.als Amyotrphic Lateral Sclerosis research and care. Votes must be received by 23:59:59 UTC, 5 Feb 1996. This vote is being conducted by a neutral third party. Questions about the voting process should be directed to the votetaker. Questions about the proposed group should be directed to the proponent. Proponent: Jan Rodman Votetaker: David Bostwick =================================== HOW TO VOTE Delete everything above the top "-=-=-" line and delete everything below the bottom -=-=-" line. Do not change anything between these lines, except to add your name and vote. Give your name on the line that asks for it. For each group, put your vote in the brackets next to the group name. Valid entries are ABSTAIN, CANCEL, NO, and YES. Anything else may generate an invalid vote. Don't worry about changes in spacing or any quote characters (">") that your reply may insert. Mail the ballot to . ===================================== Votes must be mailed directly from the voter to the votetaker. Distributing pre-marked or otherwise edited ballots is considered vote fraud. Only one vote is allowed per person or per account. Votes will be acknowleged by e-mail. If you have not received an acknowledgement within a few days, contact the votetaker. It is your responsibility to be certain your vote has been recorded correctly. If you want to change your vote, you may vote again, but only the latest vote will be counted. Addresses and votes of all voters will be published in the final vote ack. The purpose of a Usenet vote is to determine the genuine interest of people who would read a proposed newsgroup. Soliciting votes from disinterested parties defeats this purpose. Please do not distribute this CFV. If you must, direct people to the official CFV as posted in news.groups. When in doubt, ask the votetaker. ===== = I am distributing this because I want to make certain that all interested = people know about the creation of this new Usenet newsgroup. But if you = have never heard of Usenet newsgroups, if you do not have the capability = to read Usenet newsgroups, etc. then you should *not* vote in this process. = rgds,bro ===== -=-=- -=-=- BEGINNING OF BALLOT: DELETE EVERYTHING ABOVE THIS LINE =-=-=-=-=-=-= This ballot is available only from postings | FIRST CALL FOR VOTES | in news.groups or by e-mail from the | SCI.MED.DISEASES.ALS | votetaker. It is distributed blank. 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[Your Vote] Group (Place your vote in the brackets next to the group) ------------------------------------------------------------------------- [ ] sci.med.diseases.als -=-=-=-= END OF BALLOT: DELETE EVERYTHING BELOW THIS LINE =-=-=-=-=-=-= -=-=-=-= (9) ===== allergy studies and ALS? ========== Date : Mon, 15 Jan 1996 10:57:57 -0500 >From : SkyGoetze@aol.com Subject: Re: ALSD235 ALS-ON-LINE I just wanted to note that my husband and I have noticed more difficulty breathing when he ingests certain foods. All these foods and drinks have one ingredient, either Sodium Benzoate or Potassium Benzoate. When I eliminated this from his diet, his breathing seemed to be less labored. Benzoate appears to be a preservative used in nearly all soft drinks, lunch meats, mayonaise....the list is endless. Have you or any of you ever heard of allergy related studies in relation to ALS? Skygoetze@aol.com (10) ===== Should I be worried? ========== Date : Sun, 7 Jan 96 04:49:41 EST >From : timothy.bouquet@tcs.wap.org (Timothy Bouquet) Subject: ALS MAILING LIST My mother-inlaw died six years ago from ALS. I read that ALS is sometimes genetic and worry about the possibilities that my wife may develop it. My wife suffers from panic attacks and depression. I read that the neuro- transmitter dopamine is suspected to be involved in panic attacks. I also read that dopamine is involved in ALS and that early treatment with Parkinson's medications may improve the course of ALS victims. Is the incidence of panic and anxiety higher in ALS patients than the general population? Is there a test for the genetic form of ALS? What are the early symptoms of ALS? Should I be worried? (11) ===== re: DHEA ========== Date : 13 Jan 96 19:41:26 EST >From : "Wayne Phillips" <70303.173@compuserve.com> Subject: re:DHEA or "steroid hormones and neurodegenerative diseases" Maryellen; This is my pet area of investigation, though I haven't had the time to pursue it much the last couple of years. I'm an ALS patient and medical layman. While searching Medline for "steroid? and neuron?" two years ago I saw some papers on "neurosteroids". Neurosteroids (pregnenalone, progesterone, DHEA or dehydroepiandrosterone) are created in glial cells in the CNS. They and their metabolites have neuroprotective qualities. This includes protection against glutamate toxicity, which has been implicated in ALS. Progesterone inhibits the stimulatory effects of the neurotransmitter acetylcholine, and modulates the responsiveness of GABA receptors. These hormones are precursors to testosterone and estrogens. I have been taking progesterone oraly for 2 years; it has noticably reduced my cramping and eliminated my insomnia. It also seems to greatly reduce aspirating my saliva. Two years ago my doc said DHEA wasn't available except in small quantities for research. Digest #154 has more info, including research references and some abstracts. I'll email it to you. Also, I'm using a two switch Morse code system called DARCII TOO. I activate the switches by rocking my head back and forth. I'll send info if you like. Wayne Phillips 70303.173@compuserve.com (12) ===== Dr. Livingston's "ALS Guide" in Spanish. ========== Date : Fri, 12 Jan 1996 15:41:17 +0100 >From : jfs@mad.servicom.es (Juan F. Salort Madrid, Spain) Subject: Re: ALS DIGEST SPANISH SUBSCRIBERS I am writing a Spanish language version of the ALS Guide written by Dr. Livingston. I think it will be ready on the first week of February. You could write about that to ALS Digest subscribers. You could let them know my mail address, in order to facilitate to anybody a direct comunication with me if they are some Spanish speaking subcribers who wish to colaborate on this version of ALS Guide. Sincerely, Juan. === end of als 236 === 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