Date: Sun, 4 Dec 94 23:52:08 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#156 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#156, 04 December 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot'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. The ALS Digest is == == published (approximately) weekly. Currently there are == == 410+ 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 .. Value of physical therapy 2 .. DECtalk speech synthesizer 3 .. T cells, Viruses and ALS 4 .. mac software question 5 .. Amalgam toxicity and ALS 6 .. Physicians Online 7 .. AMYLOID Mailing List 8 .. Russia & ALS (still searching) 9 .. Registries for genetic disorders (1) ===== Value of physical therapy ========== Date : Sat, 3 Dec 1994 00:00:13 -0500 (EST) >From : Brian Gerber Subject: Value of physical therapy My mother has ALS and has virtually lost the use of both of her legs. She is taking no medications, but is getting some physical therapy and some training using braces. So far the braces and the training are not going well, and she is wondering about the value of physical therapy in itself. We would be interested in hearing from other people whether they feel the physical therapy they have gotten was helpful or not. Was some of it helpful - if so which activities? Thank you, Brian Gerber bgerber@panix.com (2) ===== DECtalk speech synthesizer ========== Date : Sat, 3 Dec 94 11:39:00 CST >From : Woody Bledsoe Subject: DECtalk speech synthesizer I now have a DECtalk speech synthesizer, which works in conjunction with a lap-top Macintosh computer. It works very, very well. I had an earlier (cheaper) voice synthesizer, but it could not be understood very well (and had other annoying problems). This DECtalk accepts punctuation marks, such as , or ! or . or ? and alters its talk accordingly. I am very pleased with it. It has ten different kinds of voices, voices of a child, four women voices, and voices of a young man, a "regular" man, an old man, a hoarse man. (It is even fun to call someone and use "my" child voice or my "lady" voice, on the phone.) We now have a speaker phone which makes the use of DECtalk much easier. Tony Vitale, a researcher at DEC (Digital Computer Company), first told me about this device. He and Dennis Klatt at DEC built that system. Tony also has ALS and has been on the net. But he is reluctant to mention DECtalk, since it would seem self serving. vitale@dectalk.enet.dec.com They sent me a voice tape which exhibits the quality and variety of voices that they have on DECtalk. And I believe that you can get that same tape (free, I believe) by emailing Tony. Or maybe calling 1-800-digital. I too have worked as a researcher in areas like this (Professor of Mathematics and Computer Science at the University of Texas). And I am excited about this fine machine. I am not claiming that there aren't other good ones out there. I have bulbar ALS and this is a great help to me, especially on the phone. It is not real cheap. I had to buy both the DECtalk and my lap-top computer. But one can hook it to most any existing computer, I believe. I also hired a young man to hook it up for me and provide me with the opportunity of storing many, many messages in the system, each of which is called to speak by only typing the message "name" (usually two letters and numbers like, a1, b3, name, ph3, ...). For example, if I type, //b1, it says, "This Woody Bledsoe". Etc, as follows. I type the first line, it speaks the following one. //b1 This is Woody Bledsoe //b1 //b2 I cannot talk because I have ALS. So dectalk is talking for me. //p1 //p2 I love you //gb Hello Pam. This is Dad. How do you like my dectalk? I love you. Good bye. //b4 Our phone number is 512-331-8808 // Our phone number is 512-331-8808 (Just repeats the previous message) etc. It stores all of these names in alphabetical order in its memory and let me see them. -- All of that is handy, but the real value is in the quality of the talk. It pronounces ANYTHING. Even if a word is misspelled it will try to pronounce it. (And not completely interrupting the conversation by complaining that I have made an error.) Feel free to call me on the phone (see above) and hear my "speech". But I might cut that off if I get too many. Woody Bledsoe bledsoe@cs.utexas.edu 3Dec94 ===== = Dear Woody, = Thanks for the note and thanks for the new e-mail address for Tony. = The address I was using for him vitale@speech.enet.dec.com stopped = working. Then I tried vitale@enet.dec.com but that did not work either. = So lately Tony has not been receiving the ALS Digest. But thanks to = you I can correct that problem. By the way, all of us are here to use = the ALS e-mail net in a "self-serving" way (otherwise, why sign up?). = Not only that, but I think it is OK to advertize on the Internet ... = for sure it is OK to advertize things that relate to ALS here in the = ALS Digest. It would be great if all vendors, publishers, agencies, = companies that have ALS-related products, services, etc. were to be = on-line with us. Someone should please correct me if I am wrong about = this. rgds,bro ===== (3) ===== T cells, Viruses and ALS ========== Date : Wed, 30 Nov 94 10:04:49 PST >From : scottb@cerf.net Subject: T Cells, Viruses and ALS *** T Cells, Viruses, Fungi, Exercise and ALS *** T Cells (Thymic Lymphoid Cells) are produced by the Thymus and are a critical part of our body's immune system defenses against viruses, malignant cells, fungal infections and some bacteria. As we age, we become less and less able to produce T Cells which renders us less able to fight off viruses, malignant cells, fungal infections and some bacteria. The decreasing availability of T Cells to the body which becomes increasingly more apparent around the ages of 50-60 seems suspiciously correlated with the average age of onset for most adult patients with ALS which is age 60. Recent research has already established that certain viruses are often found in ALS patients (e.g., 1994 BMJ article). Is it possible that as the body ages and as the availability of T Cells decreases, the impact of recent or long-standing viral, fungal or bacterial infections becomes more severe. Without sufficient T Cells to defend us from these threats to our neuromuscular system, might we become more vulnerable to viral, fungal or bacterial agents which enter our bodies or which already exist in our bodies from years past, and might these agents begin to ravage our neurons with increasing severity as they begin to overcome remaining supplies of T Cells? Thus, in various forms, these viral, fungal or bacterial agents might represent various etiologies which result in a final common diagnosis of ALS. Might this account for the origins of ALS in a significant number of ALS patients? Consistent with this, I have read research suggesting that the slow spread of ALS through the neuromuscular system is consistent with the movement that a virus might have as it travels through the body. Further, the slow spread of ALS through the neuromuscular system might also be associated with the slow decline in availability of T Cells and thus their slowly increasing inability to fight off viral, fungal or bacterial agents. As an aside, I have also read that heavy exercise and dieting may also reduce T Cell counts, and heavy exercise is one of the few weak links that epidemiological research has thus far identified as a possible historical commonalty among a small, but significant, number of ALS patients. With regard to T Cells and the immune system, an ALSA document summarizing immunological factors stated that "Detailed immunological screening of ALS patients does not suggest either a generalized defect of immunoreactivity nor immunoregulation nor is ther a lymphocyte defect seen in ALS patients. Some increase in Suppressive T-Cell population has been noted which is the opposite of what is seen in multiple sclerosis." If I understand this correctly, this statement would not be inconsistent with my statements above. Herein, my understanding is that all people (people with ALS and people without ALS) begin to lose availability of T Cells as they age. I therefore would not expect to see a difference/deficit in T Cells if comparing ALS to Non-ALS groups of the same age. However, I am suggesting that as ALS patients begin to lose the availability of their T Cells (just the same as people without ALS), they may become more vulnerable to specific previously contracted/long-standing viral, fungal or bacterial agents which are present in their body and which may then begin to have an increasingly detrimental impact on their neuromuscular system. If lowered T Cell availability results in an increased likelihood of suffering serious neuromuscular system insult from viral, fungal or bacterial agents, then the next question would be "How can this be counteracted?" How can you boost the immune system to fight off these therats when you have less T Cells to do the job? Could boosting the immune system to ward off viral, fungal or bacterial agents avoid, slow or stop the onset/progression of damage to neurons and ALS? How might this relate to some of the experimentation with AIDS and T Cells? What about Alpha Interferon? ETC. Comments please. I invite thoughts, input, theories, published or unpublished research, presentations, discussion, etc. from the national and international community interacting on this bulletin board. Please post any helpful information or thoughts you may have on this bulletin board so that other readers may benefit from your feedback. Respectfully, Scott Bernard, Ph.D., MBA, MPH (4) ===== mac software question ========== Subject: mac software question >From : krampetzg@vtnet.com Date : Nov 28 00:22:03 1994 My Father who suffers from ALS would like any info you have about single key=word programs for the macintosh that are menu driven any Ideas? His computer is a an older model mid 1980s. Thanks in advance, Geoff Krampetz krampetzg@vtnet.com (5) ===== Amalgam toxicity and ALS ========== PART (1) ------------ Date : Wed, 23 Nov 1994 10:34:48 -0600 (CST) >From : cooperr@wl.aecl.ca (Brian Cooper) Subject: Amalgam toxicity and ALS Bob, I have recently joined the AMALGAM mailing list and was interested by a post you made in early May, 1993 requesting information on possible linkages between amyotrophic lateral sclerosis and mercury poisoning from dental amalgam. I picked up the reference list provided by Siegfried Schmitt in AMALGAM, but I was wondering whether you had been able to obtain additional information? I'm interested in gathering statistical information that might shed some light on the question. Thanks for any help you can provide. R. Brian Cooper Atomic Energy of Canada Ltd. AECL Research, Pinawa, Manitoba, Canada cooperr@wl.aecl.ca ________________________________________________________________________ PART (2) ------------ Date : Fri, 25 Nov 1994 15:19:54 -0600 (CST) >From : cooperr@wl.aecl.ca (Brian Cooper) Subject: Thanks for putting me on ALS list Thanks for adding my name to the ALS Interest Group mailing list. I am finding the information very useful and would like to continue receiving it. Please publish my inquiry about amalgam if you think it may be useful. Perhaps the issue has been put to rest already. I came across a comment in the AMALGAM list that men are about twice as sensitive to mercury poisoning as women. It suggested a possible link to the 2:1 ratio of ALS cases among men and women. I am trying to follow up that lead now. I will provide any information I come across to the group. I hope I can make some contribution. Regards, R. Brian Cooper Atomic Energy of Canada Ltd. AECL Research, Pinawa, Manitoba, Canada cooperr@wl.aecl.ca ________________________________________________________________________ (6) ===== Physicians Online ========== Date : Fri, 2 Dec 1994 04:00:32 -0600 Sender : "Clinical WANS: Design & Usage" : >From : "Judith R. Logan" Subject: Re: Physicians' Online In article <941127174027_8112661@aol.com>, "John M. Roraback Ph.D." wrote: > I am looking for the phone numbers and adresses of Physician's Online. > Thanks in advance for your help > John Roraback Physicians Online 560 White Plains, 2nd Floor Tarrytown, NY 10591 TEL 1-800-332-0009 (7) ===== AMYLOID Mailing List ========== Date : Fri, 02 Dec 1994 08:49:14 +1000 >From : David Small Subject: AMYLOID Mailing List AMYLOID Mailing List ANNOUNCING the **AMYLOID** Mailing List This mailing list is devoted to researchers in the field of Alzheimer's disease and related disorders but is also open to those who have general interests in the latest research developments. While the mailing list has a leaning towards basic research (biochemistry, cell and molecular biology), contributions are welcomed from everyone in the field. * JOB VACANCIES * MEETING ANNOUNCEMENTS * SCIENTIFIC DISCUSSIONS * LATEST RESEARCH NEWS To subscribe to amyloid, send mail to biosci-server@net.bio.net with the words "subscribe amyloid" in the body of the message (no subject). To post to amyloid, send mail to amyloid@net.bio.net. David H. Small Discussion Group Leader Dept. of Pathology, University of Melbourne Parkville, Victoria, 3052, Australia david_small@muwayf.unimelb.edu.au (8) ===== Russia & ALS (still searching) ========== Organization: Moscow State University, Biol. Dpt. >From : Alexander Kaplan Date : Sun, 4 Dec 94 17:29:20 +0300 Subject: Re: neuromuscular researchers in Russia Dear Mr Broedel, Thank you for your message. Sorry for the my delay with an answer. Unfortunately, e-mail service is not very wide in Russia. I can't find any researchers of neuromuscular diseases who have on-line e-mail. But if you want I can convey information about your interest. My own interest is the diagnosis of brain dysfunctions by means of nontraditional computer assisted methods of EEG analysis or by means of evaluation of the sensorimotor coordination. If anyone has interests in this area I am ready to be in touch. Sincerely Yours, Alexander Kaplan Head of Neuroscience Group Moscow State University (9) ===== Registries for genetic disorders ========== Date : Fri, 2 Dec 94 15:53:47 EST Sender : healthnet@calvin.dgbt.doc.ca >From : wosei@Socrates.health.gov.sk.ca (Dr. William Osei) Subject: Registries for genetic disorders. Comment: Networking in Canadian Healthcare We are trying to compile a list of jurisdictions and institutions in North America and Europe that have registries for genetic disorders. Could any subscirbers assist? Thank you. William Osei === end of als 156 ===