Date: Sat, 25 Nov 95 19:35:51 EST From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD225 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#225, 25 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 == == 1240+ 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 .. ALS Bulletin Board on America On Line 2 .. new Usenet newsgroup forming: sci.med.diseases.als 3 .. Concept of ALS Treatment 4 .. Oral Care 5 .. re: ALS first identified? 6 .. Electronic Larynx for ALS? 7 .. Subways 8 .. re: BDNF question 9 .. injury & ALS (1) ===== ALS Bulletin Board on America On Line ========== Date : Sun, 8 Oct 1995 19:28:51 -0400 >From : APALS@aol.com Subject: The ALS (Lou Gehrig's Disease) bulletin board.. Attention: America On Line Members! For anyone wishing to give and/or receive information and support via the AOL ALS bulletin board, please use the following directions to join us! The ALS (Lou Gehrig's Disease) bulletin board! We hope you'll join us there! Keyword: disABILITIES Double Click-on: disABILITIES Message Center Double Click-on: General Discussions Click-on icon: List topics Click-on: ALS (Lou Gehrig's Disease) This bulletin board system offers support, encouragement and guidance to those of us affected with ALS. There's a wealth of information to be shared and we encourage active participation of ALS patients, families and friends. God Bless Us Everyone! A PALS and A PALS Wife ( A Person with Amyotrophic Lateral Sclerosis). === = This is a reprint from ALSD219. Because of the fact that many new AOL = people have signed on, I want to make certain they know about this. = Currently there are 191 America On Line users who also are ALS Digest = subscribers. rgds,bro === (2) ===== new Usenet newsgroup forming: sci.med.diseases.als ========== Date : Thu, 23 Nov 95 20:42:22 -0800 >From : Jan Rodman Organization: ALS Society of Canada Newsgroups : news.announce.newgroups, news.groups, bionet.announce, : bionet.neuroscience, bionet.prof-society.cfbs, sci.med, : sci.research, misc.health To : bro@huey.met.fsu.edu Subject : RFD: sci.med.diseases.als REQUEST FOR DISCUSSION (RFD) unmoderated group sci.med.diseases.als Proponent: Jan Rodman Follow-ups are directed to news.groups ====================================== This is a formal Request for Discussion (RFD) on the creation of a new world-wide unmoderated Usenet newsgroup, sci.med.diseases.als. Newsgroups line: sci.med.diseases.als Amyotrophic Lateral Sclerosis research and care RATIONALE: sci.med.diseases.als There is currently no usenet discussion group for the many persons affected by amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's Disease, Motor Neurone Disease, and MND). Amyotrophic lateral sclerosis is a rapidly progressive, fatal neuromuscular disease. It attacks the motor neurons responsible for transmitting electrical impulses from the brain to the voluntary muscles throughout the body. When these muscles fail to receive messages, they eventually lose strength, atrophy and die. There is no known treatment or cure. ALS cannot be *caught* -- it is not contagious. In 90% of ALS cases, it strikes people with no family history of the disease. 10% are classified as familial or inherited ALS. It may occur at any age, with the likelihood increasing as people grow older. ALS occurs equally in men and women. Because the disease frequently takes its toll before being positively diagnosed, many patients are debilitated before learning they have contracted ALS. The disease does not affect the senses -- taste, touch, sight, smell and hearing -- or the mind. . Education of healthcare professionals as to the nature of the disease is a priority. ALS wreaks a devastating effect on patients as well as their families. As they struggle to cope with the prospect of advancing disability and death, it consumes their financial and emotional reserves. It is a costly disease in its later stages, demanding both extensive nursing care and expensive equipment. The target population therefore includes not only people with ALS, but also their families, caregivers and healthcare providers. This proposed newsgroup would enable researchers and doctors from all over the medical and scientific community who are studying this disease, to communicate via the ALS newsgroup and could be invaluable help in the dissemination of useful information to all persons concerned with ALS. The newsgroup would also give patients a forum to discuss the disease, and also offer support. CHARTER: sci.med.diseases.als The proposed newsgroup, sci.med.diseases.als is intended for discussion about the many different aspects of ALS as experienced by patients, their caregivers, friends and family members, doctors and other medical professionals, or anyone affected by or involved with ALS, as well as those who wish to learn about its symptoms, latest treatment options and research. Anyone with an interest in ALS is free to post, including the medical and scientific community, as this newsgroup is interested both in fostering communication between people with ALS from all parts of the globe, as well as providing an open forum for the exchange of medical and scientific information which can be useful to all participants. Above all, we wish to encourage a supportive and open atmosphere for the free exchange of opinions and information. The following are examples of possible posting topics: = questions regarding any aspect of ALS = symptoms and problems arising from the onset of new symptoms = treatments and therapies, both conventional and alternative = emotions, including fears and anxieties caused by this illness = social issues regarding this illness = problems in the medical community in regard to ALS = new information and resources available about the disease = related practical problems or solutions = ALS research findings Commercial advertisements may NOT be posted to this proposed group. END CHARTER DISTRIBUTION This RFD has been cross posted to: bionet.announce, bionet.neuroscience, bionet.prof-society.cfbs, sci.med, sci.research, misc.health, news.groups === = This was announced in the Usenet newsgroup news.announce.newgroups (and = others). Usenet news readers are encouraged to join news.groups and to = participate in discussion about this new group (sci.med.diseases.als). = In a few weeks a vote will be taken via e-mail. When we have details = about the election process/proceedures I will do a special ALERT broadcast = to make certain that all interested people know about it. For the new group = to be approved, there must be 100 more YES votes than there are NO votes. = Hopefully ALS Digest subscribers will be interested in helping to achieve = that goal. rgds,bro === (3) ===== Concept of ALS Treatment ========== Date : Sun, 19 Nov 95 23:12 WET >From : cesar@lava.net (Ed Cesar) Subject: Concept for ALS Treatment Has anyone ever recovered from ALS? We have a friend who is afflicted with this disease which has progressed to the point that she can no longer eat, or breathe without a respirator. Recently, she underwent a tracheaotomy. Naturally, her family and friends are desperate to find a cure for her if there is one. The November 1995 issue of Scientific American, beginning on page 54, contains an article entitled, "The Brain's Immune System". The article states the brain's immune system (quoting)..."consists of cells called microglia that are normally protective but can be surprisingly destructive". "The cells may contribute to neurdegenerative diseases and to the dementia of AIDS". On page 61, the article also states that preliminary evidence points as well to microglia as possible participants in multiple sclerosis, Parkinson's disease and ALS. The article discusses three states microglia may experience. State 1, the resting state is their normal condition when they are constantly monitoring the health of cells around them. State 2 is a changed state when they first detect a disturbance in their microenvironment, such as injury to a neuron. State 3 is a condition when microglia react to the death of other cells; they change shape again and attempt to degrade the dead matter [around them]. One observation that fascinated me was that microglia seem to undergo changes when some form of injury to the brain or its health has taken place. Several of the reports I read in the Digest mentioned the onset of ALS seemed to be preceeded by some form of disturbance to the brain. For example, problems associated with anasthesia and tooth extraction were mentioned. I haven't yet read the back issues of the Digest. Perhaps injury, disease, or other damage to the brain in one form or another is a relatively common occurrence preceeding the onset of ALS. Another observation was that microglia can eventually return to stage 1, the healthy state. As I interpret the article, when the microglia in the brain suffer a shock they can go into a long term stage 3 dormant phase, but they will usually automatically recover at some future point in time. This fact suggested to me that perhaps patients suffering from ALS might eventually recover if they could stay alive long enough; however, since the disease is considered fatal, hospital personnel and medical practitioners expect the worse and might treat their patients as terminal. However, if it were known that an ALS patient could eventually recover by keeping him/her alive long enough for the microglia to reactivate, along with medication or some other form of treatment to help rejuvinate them, perhaps a new approach could be developed to treat ALS patients. Please note that this idea is HIGHLY speculative. The last thing I want to do is to stimulate false hopes. The article I cited doesn't mention this concept as a possible approach to treating ALS. My only purpose in suggesting it is to inquire about whether there is any ongoing research along these lines, and if so, where it is being done, by whom, and what progress has been made. The article mentioned that Kincaid-Colton and her collegues at Georgetown University are studying a possible connection between microglia and Parkinson's disease. I would appreciate any comments. Respectfully, Ed Cesar (4) ===== Oral Care ========== Date : 22 Nov 95 15:22:06 EST >From : "Pamela Cazzolli, RN" <74553.2036@compuserve.com> Subject: Oral Care In response to Maddy's question on how to remove oral mucus if there is difficulty in opening the mouth (#3 in ALS Digest #224): Some persons with ALS have difficulty opening their mouth because of joint stiffness of the jaw due to limited mobility. Consequently, giving good mouth care can be a challenge, especially for caregivers. One way some caregivers successfully provide oral hygiene and remove mucus from someone with limited jaw movement is by wrapping a clean, moist washcloth around a tongue blade to clean the mouth. Some persons enjoy oral care with a cloth moistened with a mouthwash. Use of a tongue blade permits easier access inside the mouth for oral cleansing than wrapping a cloth around a finger, plus it spares the risk of a finger being bitten. Although commercial swabsticks are available that are premoistend with lemon-glycerin or a salivary supplement which are effective for managing a dry mouth, some persons with ALS prefer the use of a moist washcloth for their oral hygiene when dry mouth is not a problem. In addition, use of a washcloth is more cost effective. Persons who would like to have their teeth and tongue brushed, but are unable to expectorate and are a risk for aspiration, may possibly be candidates for using the "Plak-Vac Oral Suction Brush" which is manufactured by Trademark Medical, Fenton, MO (800-325-9044). It is a special toothbrush that can be attached to a suction pump, thus, removing oral debris. However, use of this device should be limited to persons who have suction pumps that have been prescribed by their physicians and have been professionally trained and supervised on the proper use of their equipment. In the meantime, caregivers can help prevent joint stiffness of the jaw to persons with limited jaw movement through passive exercise by slowly opening and closing the mouth as tolerated. Occasionally stretching the mouth wide open (or as wide as possible and as comfortably tolerated) can help keep the jaw joints mobile which would help facilitate in oral care. Pamela A. Cazzolli, R.N., ALS Nurse Consultant (5) ===== re: ALS first identified? ========== Date : Wed, 22 Nov 1995 10:22:26 >From : Stuart.Neilson@brunel.ac.uk (hssrsdn) Subject: Re: ALS first identified? When was ALS first identified? The first reference that I have to ALS is by the 19th century French physician Jean-Marie Charcot, "De la sclerose laterale amyotrophique", Progres Medicale, 1874;2:325-327 and 453-455. The name Charcot gave to the disease is descriptive of the pathology and has largely remained - it has also been called Charcot's disease (mostly in France) but is distinct from Charcot-Marie tooth disease. Motor neuron disease is a group of related conditions which contains ALS and since about 1940 has been the preferred name in the United Kingdom. Most cases of MND are ALS, so the two terms are often used interchangeably, usually without any great inaccuracy. Stuart Neilson, CSHSD, Brunel University. (6) ===== Electronic Larynx for ALS? ========== >From : Neal Melanson Subject: Electonic Larynx for ALS Date : Tue, 21 Nov 1995 18:15:19 -0500 (EST) Please forward me any information about electronic larynx devices to be used by an ALS patient with a tracheostomy and little or no use of his hands. What I had in mind was a vibrating coil worn around the neck, and activated by a button controlled by the wrist or forarm. I also heard of a device made by Cooper-Rand worn around the head that has a tube that inserts into the mouth and allows the patient to mouth words using the sound emitting from the tube. Help!, this patient is my father and I am otherwise unable to understand him by lip reading. Thank you, Neal Melanson nmelanson@steinbrecher.com or nemelans@neu.edu (7) ===== Subways ========== Date : Thu, 26 Oct 1995 19:54:37 -0400 >From : NummiJ@aol.com Subject: Subways I am interested in getting some information on a specific form of Lou Gehrig's disease. It affects only your arms. I believe it is called Subways and I really don't know where to begin searching. If anyone could point me in the right direction I would greatly appreciate it. Please reply by email to me at : nummij@aol.com (8) ===== re: BDNF question ========== Date : Mon, 20 Nov 1995 08:46:13 -0600 >From : sth@piglet.lanl.gov (Steve Hildebrand) Subject: BDNF question > >I have a question that someone may be able to answer about the BDNF study >that is taking place now. We were wondering if the portions of the brain >that are used in making this drug come from the tissue in aborted babies. > With regards to the above question; I'm in the BDNF study here in New Mexico. The info I got was that the bacteria E. coli was genetically altered to produce this substance. The company Amgen is running the study. Steve (9) ===== injury & ALS ========== Date : Tue, 7 Nov 1995 11:25:19 -0500 >From : gbluhm@head-cfa.harvard.edu (Gerald M. Bluhm) Subject: Re: ALSD222 ALS-ON-LINE I'd just like to follow up on Dr. Furley's comment about injury. I've actually been wondering about this for awhile - his note has prompted me to add my own comment. My mother was diagnosed around Feb. of this year with ALS. She has bulbar onset. Before November '93, she'd been having heart problems, angina I believe. Around November, her doctors decided she should have an angioplasty (with the balloon - sorry if the spelling's wrong - couldn't find it in my Webster's II). The first one wasn't successful, so she had a second one. The second one wasn't successful so she had a third. During the 3rd she had a minor heart attack. She received electric shock. The artery that was giving her problems, apparently a minor artery, died. Since that time, of course, we thought she was doing much better. But almost from that time on, she always complained that things just didn't feel right. For the winter of '94-'95 she went to Florida. She saw a neurologist down there, but he saw nothing wrong. She came back to Boston in Feb. '95 and was diagnosed immediately by Dr. Brown at MGH. I'd be very interested in hearing if other people's stories are at all similar, and if so, whether any studies have neen done. Gerry === end of als 225 ===