Date: Mon, 28 Aug 95 02:15:05 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD210 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#210, 27 August 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 == == 940+ 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 .. speech at Fenway 2 .. re: Question on neurofilaments 3 .. meeting of drug companies 4 .. Questions from Belgium 5 .. need info on ventilators and portable breathing aids 6 .. Hello from Spain 7 .. Neuro-muscular problem 8 .. Dermatomyositis 9 .. Post-Polio Internet Resources (1) ===== speech at Fenway ========== >From : vitale@dectlk.ENET.dec.com Date : Sun, 27 Aug 95 20:39:30 EDT Subject: the speech at Fenway. Tx. \tony Dr. Anthony J. Vitale Honorary Chairman Lou Gehrig's Day Fenway Park - July 23, 1995 I am honored to have been chosen as Honorary Chairman of Gehrig's Day at Fenway Park. I have ALS. This day is dedicated to Lou Gehrig. He also had ALS. I would like this audience to know that I am neither angry not depressed nor sad. The soul seems to create situations for itself in life so that it can learn from them and grow. Sometimes, illness can be just the situation that enables us to make changes in our lives. It provides the needed space, the emptiness, the silence that, it seems, must occur before creativity is free to operate. The emptiness seems to act like a vacuum, pulling the needed experience to it. Illness can be a magnificent opportunity to become a whole person. I always felt I needed to learn certain skills in order to become a happier and more complete and fulfilled individual. Skills like patience, greater trust of my fellow man, humility, understanding and acceptance of my own imperfection. I have begun to learn and to practice these skills since my diagnosis in the summer of 1993. There is nothing like tragedy or destruction to quickly push one along to learn something new when everything is taken away. You can start all over again. The slate is wiped clean. My wife Jeanine does a lot of gardening. She loves to watch things grow. However, by late summer, she becomes somewhat weary of her mistakes - mistakes in the placement of plants, the plague of insects, or the constant watering of plants. I notice that she seems to be relieved to see Autumn arrive - the first frost wiping out all of her mistakes. Then comes the empty winter - a time for dreaming, dreaming anew of beautiful colors and exciting flowers which my wife has never had the chance to grow. If winter never came - as happens in warmer climates - she would never have the chance to start from the beginning. She would always be trying to add the new while simultaneously dealing with the old - a much more difficult process. But living in New England as we do, she greets each Spring with joy, relief, surprise and wonder as nature unfolds her beauty yet again. She feels sorry in a way, for those with no winters in their lives. no chance to rest, no chance to start again - unfettered - no hope of Spring to sustain them. I've always wanted to move to a warmer climate - one in which there is no winter. But now I'm beginning to understand my wife's reluctance. There is no change, no new beginning. This horrible disease called ALS is like the Winter. It is in one sense a death - but in another a hope of renewal. I'd like to quote a brief excerpt from a free-form poem by Howard Nemerov. "That trees, the largest of living things, are initially contained in tiny seeds, is already a spectacularly visible legend of the mysteries of generation and death. The tree, rooted in earth and flowering in heaven, intimates obscure and powerful reflexive propositions about the two realms; that root and top strangely mirror one another deepens and complicates the human analogy ... I shall be like that tree." Swift once said to Edward Young, "I shall die first at the top." Now that I have only perhaps a few more years to live, I've been working harder than ever before. And I intend to keep working hard until it's impossible to lift my hands. And then I will use a speech recognizer to do my work until I can't speak. And then I will use a speech synthesizer to communicate with my co-workers, family and friends. So the reason why this day is so important, Ladies and Gentleman, is that if we are able, in the process of making money and gaining fame, to help one person like myself, then all our lives will have been worth it. John Donne said, No man is an Island, entire of itself. Every man is a piece of the Continent, a part of the maine ... we are all connected. I'd like to end by repeating a sentence from a famous individual. I use this sentence because due to this illness, I have met the most wonderful people: compassionate physicians, acquaintances who turned out to be close friends, family members who have been extremely supportive. The sentence is from Lou Gehrig at his final address in Yankee Stadium on July 4, 1939: I consider myself "the luckiest man on the face of the earth." (2) ===== re: Question on neurofilaments ========== Date : Fri, 25 Aug 1995 10:31:13 +0100 >From : spgtbjg@ucl.ac.uk (Barry Gibb) Subject: re: Question on neurofilaments > >Date : Mon, 14 Aug 1995 16:26:57 -0500 (CDT) >From : "H. Fryauf-Bertschy" >Subject: Questions > >I have a couple of questions/requests: > >1) I have read on a few occasions rather sketchy discussions of >"neurofilaments" and their possible role in causing ALS. Could someone >who understands this better than I please explain it to us laypeople.> > Think of neurofilaments (NFs) as part of the skeleton of a cell. You know that the framework/shape of your body is maintained by your bony skeleton; in a similar fashion, the shape of each cell (eg nerve cells) in your body must be supported by an internal network of long, thin structures generally referred to as the "cell cytoskeleton" (cyto=cell). Nerve cells consist of a bulbous 'head' region (perikaryon) which acts as the cells central processing unit (CPU) and is where all the main manufacturing duties of the cell are performed eg cytoskeleton manufacture. This CPU is followed, especially in the case of nerves which travel from the brain to muscles (right down to your toes!), by a long, narrow tunnel called an 'axon'. As new pieces of cytoskeleton are made in the CPU, they must then travel into and down this tunnel and become part of the existing supporting framework. What some people have found, is that in a small number of cases of ALS, the NFs do not behave as they should, and instead of becoming part of the cytoskeleton, they form separate bundles or aggregates in the tunnel. The POSSIBLE effect of this is to slowly cause the nerve cell to die, and once the nerve cell dies the muscle that it was connected to will diminish. I must stress that there is no absolute proof that accumulations of NFs is THE cause of ALS, they do appear, however, in a number of cases and therfore are a potential clue as to the underlying nature of the disease and therfore merit investigation. I hope this helps. Barry Gibb Neurology Department Institute of Psychiatry Denmark Hill London SE5 8AF spgtbjg@ucl.ac.uk (3) ===== meeting of drug companies ========== Date : Fri, 25 Aug 1995 08:10:57 EDT >From : TASM76A@prodigy.com (MR TED HEINE) Subject: meeting of drug companies The following is from the Aug 15 Prodigy ALS Bulletin Board: TO : ALL FROM: ALSA NATIONAL Five drug companies conducting ALS research met for the first time ever on Friday, August 11 to discuss forming a consortium. The group gathered in Philadelphia and consisted of representatives from: Amgen--Cynthia Fuller, Ph.D. and Tom Nusbickel; Cephalon--Michael Murphy, MD, Ph.D., (Mary Fisher, Lynne Brookes); CytoTherapeutics,--Moses Goddard, M.D., Ed Baetge, David Fanning; Regeneron--Jesse Cedarbaum, M.D., and Rhone-Poulenc Rorer--Larry Powe, M.D., Bob Pearson. The meeting was hosted by the ALS Association and facilitated by Hiroshi Mitsumoto, M.D., Chairman of ALSA's Medical Advisory Committee. Michael W. Havlicek, ALSA's President and Ellyn C. Phillips, Co-Chair of ALSA's Advocacy Committee also attended. After a full day together the group concurred that another meeting was in order. It will be scheduled in the Fall. During the day, the following topics continued to crop up as critical and require further exploration and discussion: * technical and patient issues such as combination trials, common use of placebo data, study of economic impact of ALS and reimbursement issues, and understanding the disease process. * public education * the need to better communicate with the ALS community including ALS investigators The ALS Association was very pleased to coordinate this historic meeting. (4) ===== Questions from Belgium ========== Date : Mon, 21 Aug 1995 10:21:13 +0100 >From : ereyns@be.wang.com (erwin reyns) Subject: request I am living in Belgium at about 50 km from Brussels ALS is very rare in Belgium and particular to it is that most of the persons diagnosed with ALS are living in the south of OOST VLAANDEREN (translated : East Flanders) which is a province of Belgium (that is what I picked up in a conversation). Now that I am writing this, I want to take the opportunity to put some questions on Familial ALS (Inheritable ALS?): 1. Is FALS a disease which in fact is already progressing from the birth, or is it more a status of "being vulnerable to ALS " still needing a trigger? 2. Is it possible to make some kind of FALS check-up (sorry about this word, but I can't find another English word but this one) upon the birth of a child of which one of the parents or grand parents had FALS? 3. In fact, probably overlapping my previous questions, I would like to have more and very specific details about the inheritance aspect of FALS. 4. Is there a world wide professional ALS organisation which is the root of all other organizations ? Bob, I very much appreciate this initiative and when high tech magazines contain articles who are discussing the good and the bad of the internet I would directly refer to this e-mail list and state that this use of the internet is THE example to defend it. Thanks and best regards. Erwin Reyns Groenlaan 36 bus 2 9550 HERZELE BELGIUM tel : 32 53 630409 e-mail: ereyns@be.wang.com (5) ===== need info on ventilators and portable breathing aids ========== >From : "Denton Peterson" Date : Wed, 23 Aug 1995 08:41:01 CST Subject: ALS Newsletter Please sign me up for the ALS newsletter. My father was diagnosed last winter and is in the hospital now with respiratory complications. I am especially interested in information on ventalators and portable breathing aids at this time. thanks, denny Denton Peterson, (612-215-0738), Fax (612-215-0979) INTERNET: denton.peterson@health.state.mn.us (6) ===== Hello from Spain. ========== Date : Wed, 23 Aug 1995 19:24:57 +0100 >From : earana@RAN.ES (ERIC ARANA) Subject: subscription to the ALS Digest My name is Eric. I'm calling from Spain. My father has had ALS since January, and actually he is quite bad. Things are going to fast ... I want to help and to contribute to your ALS interest group. I belong to the Spanish ALS Association. So to anything you may need from me, call me. First I want to suscribe to the ALS digest. Regards, Eric. (7) ===== Neuro-muscular problem ========== Date : Sat, 29 Jul 1995 09:06:44 -0400 Sender : SJU Neuromuscular Research and Information List : >From : "Dennis J. Tonetti" Subject: Neuro-muscular problem Hi, Perhaps there are some budding Neurologists on this list that would be willing to take a stab at this medical prob. I have classic MS symptoms with no clinical evidence. Atarax precipatated a crises that mimicked Myesthenia Gravis. Major symptoms: Loss of sensory perception in temperature and pain, head to foot, mouth to rectum. Touch remains in tact. Total and utter exhaustion after minimal mental or physical anything. Short term memory problems, and automatic (?) memory, like driving a car. Plus a whole lot more when energy capsule is depleted. Vitmain B12 has restored some of the sensory problems. My Neurologist is at a total loss as to the problem. All tests are fairly normal. MRI shows mild diffused cortical atrophy. He's given me the okay to do any research to aid both he and I to come up with some possibilties. A father that had the same symptoms at approx. the same age, 50. A sister starting to exhibit the same symptoms. They never could diagnosis my fathers problem. He died a couple months ago and we had a total autopsy done. Fairly unremarkable except in one area, Central Nervous system, in particular the spinal cord. Considerable atrophy of the thoracic area and a remarkable absence of neurons. Lower spinal cord not as atrophied but few, if any neurons. Pathologist unable to ascertain why. Additionally, kidneys had considerble sclerosis and some in the pancreas. That's pretty much it. Any thoughts? Dennis Tonetti (8) ===== Dermatomyositis ========== >From : martin!Roger_Creedy@netcom.com (Roger Creedy) Date : Tue, 15 Aug 1995 13:18:33 CDT Subject: Dermatomyositis While preparing a recent ALS digest for printout for my secretary, I noticed that Dermatomyositis was listed in the MDA report about neuro-muscular "diseases". My sister-in-law was diagnosed with this after 2 trips to Mayo clinic. She seems to be responding well with prednizone. What I'd like to find out for her, since there isn't much activity on the board for this rare illness, is a pointer to a FAQ and perhaps e-mail responses from anyone who has this so they could share their experiences much as occurs on the ALS list. (Her sister, my wife, has MS. We know there is an increased chance of relatives inheriting MS but we sure didn't expect something like Dermatomyositis!) Regards, Roger Creedy - Rockford, Il alt. address: r.creedy1@genie.geis.com ps. Thanks to all on the ALS list from Debbie, my secretary. Her mom has ALS and she has learned a lot from the group and looks forward to receiving it. - R. (9) ===== Post-Polio Internet Resources ========== Newsgroups: bit.listserv.l-hcap Date : Mon, 14 Aug 1995 13:15:18 EDT >From : Bill McGarry Subject : Handicap Digest # 3869 To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send electronic mail to Bill McGarry the following addresses: wtm@bunker.shel.isc-br.com Bill McGarry (Moderator) ... (203) 926-6187 ========== Subject: Post-Polio Internet Resources >From : epwoll@execpc.com (Ernie Wollering) The following describes how to access information on post-polio syndrome on the Internet. There is an excellent reference area that can be accessed via WWW at: http://www.eskimo.com/~dempt/polio.html Information can be retrieved via ftp from: ftp.eskimo.com /u/d/dempt/polio or ftp://ftp.eskimo.com/u/d/dempt/polio There is a newsgroup named alt.support.post-polio. You can subscribe to this like any other newsgroup. The charter for the newsgroup is available at the above WWW site. There is an active mailing list listserv that can be joined by sending an e-mail to listserv@sjuvm.stjohns.edu with a blank subject line and sub Polio yourfirstname yourlastname in the body of the message. The mailing list and newsgroup are linked so the same information is available on either. The mailing list has an archive facility if you'd like to look at previous postings. There is also an online archive of previous postings to the mailinglist/newsgroup maintained by Ron Stone at: gopher otpt-gopher.ups.edu or gopher://OTPT-GOPHER.UPS.EDU:70/1d-7%3A20%3APolio There is an IRC chat session on Wednesday nights from 6-8pm PST. To connect, you use an IRC program and type: /join #polio There is a list of recent medical articles on post-polio syndrome at: http://execpc.com/~epwoll/medindx.html Check out Dick Spears new Rollin' Rat Web Page at http://www.indirect.com/www/rspear/rollin.html Don't be hesitant to post questions or comments. If you need information, would like to share an experience, or would just like to say Hi, that's what this is all about. There're a lot of knowledgeable and friendly folks around here. Ernie -- === end of als 210 ===