=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#111, 13 July 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig'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. Currently there are == == 270+ 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 .. re: lung capacity 2 .. SOD-1 updates 3 .. depression list? 4 .. HOME VENTILATION 5 .. Neurontin 6 .. renewal 7 .. Amex & biotechs 8 .. National Health Info Center (1) ===== re: lung capacity ========== Date : Sun, 10 Jul 1994 19:21:55 -0700 (PDT) >From : Leigh Redding Subject: Re: ALSD110 ALS-ON-LINE I recently had to have a trach installed for the use of a vent. The major criteria is not lung capacity but O2 saturation. In April I began to act weird, fall down a bit and generally act like my ALS was accelerating until my wife figured that just maybe it could be something else. The Dr. had her bring me to the ER and it was obvious to the trained staff that I was in dire need of oxygen as my CO2 level was out of sight. Well the pure stuff collapsed a lung and I ended up in the ICU. 20 plus days later I got home, I guess I surprised some people by even getting through the ICU. The upshot is that I sleep with a vent on ambient air with an O2 bottle available if needed. I also go on a vent for my daily nap. The rest of the time I'm off the vent and limited to staying home unless we have portable vent capability in the car. Weekly the homecare nurse comes and checks my saturation, so far it's been staying in the mid to high 90% range. You may want to check this with your local pulmonary people before responding, I'll leave that up to you. Regards, Leigh Redding PS - I also have some input on swallowing but will follow up on that later. (2) ===== SOD-1 updates ========== Date : Tue, 12 Jul 94 19:57:25 EDT >From: rosen@wadsworth.ph.albany.edu (Daniel Rosen) Abstract from a recent paper: Title: A frequent ala 4 to val superoxide dismutase-1 mutation is associated with a rapidly progressive familial amyotrophic lateral sclerosis Authors: Rosen, D.R., et al Journal: Human Molecular Genetics 3:981-987 (1994) Abstract: Familial amyotrophic lateral sclerosis (FALS), a degenerative disorder of motor neurons, is associated with mutations in the Cu/Zn superoxide dismutase gene SOD1 in some families. We confirm a recently reported ala 4 -> val mutation in exon 1 of the SOD1 gene and report that this mutation is both the most commonly detected of all SOD1 mutations and among the most clinically severe. By comparison with our other FALS families, the exon 1 mutation is associated with reduced survival time after onset: 1.2 years, as compared to 2.5 years for all other FALS patients. We also demonstrate that SOD1 is prominently expressed in normal motor neurons and that neural expression of SOD1 is not prevented by this exon 1 mutation. Assays of SOD1 enzymatic activity in extracts from red blood cells, lymphoblastoid cells, and brain tissues revealed an approximately 50% reduction in activity of cytosolic SOD1 in patients with this mutation compared to normal individuals. By contrast, patients with sporadic ALS had normal levels of SOD1 enzymatic activity. Why this SOD1 mutation causes motor neuron death in FALS remains to be established. While it may be that FALS is a consequence of loss of SOD1 function, it is also possible that motor neuron death in this dominantly inherited disease occurs because the mutations confer an additional, cytotoxic function on the SOD1 protein. And a mutation report: Title: Identification of two novel mutations and a new polymorphism in the gene for Cu/Zn superoxide dismutase in patients with amyotrophic lateral sclerosis Authors: Esteban, J., et al Journal: Human Molecular Genetics 3: 997-998 Also, my address has changed. I am now at rosen@wadsworth.ph.albany.edu. Could you please change my subscription to the ALS Digest over (from rosen@helix.mgh.harvard.edu)? Thanks for this, Bob, and for everything you do. ________________________ ___________________________ ______________________________ Dan Rosen Wadsworth Center for Laboratories and Research (3) ===== depression list? ========== >From : Tony McDonough Date : Tue, 12 Jul 94 10:28:35 BST Subject: Contacts a friend of mine has a wife who is suffering from depression recently. He is looking for access to a user group like ours or access to databases for this condition. He also would like to know if there is a bulletin board available. Do you know or can you give me a contact to help us? Regards Tony ==== = Tony, Not exactly what you were looking for (I think), but maybe this = will be helpful. rgds,bro ==== ################################################################# Welcome to the Depression List ################################################################# This list will provide a forum for scholarly and/or clinical discussion of depression-related topics. Individuals doing research, scholarship, or clinical work within this domain, broadly construed, are welcome. Faculty, graduate students, and undergraduate researchers are especially invited. Approaches which are relatively inclusive of both psychological and biological aspects of depression are particularly encouraged. A large number of related topics are fair game, including but not limited to: Diagnostic and phenomenological issues Psychological and biological vulnerability Biological and psychological markers Personality and depression Social/interpersonal consequences of depression Treatment and prevention Like any discussion group, the quality of the forum will depend on developing a core group of individuals who will share their research and thinking. Communication and discussion of new findings, well before journal publication, and feedback from group members regarding directions for future research are especially welcome. WHERE TO SEND MESSAGES: Postings to the List: depression@mailbase.ac.uk Academic Questions for List Owner: Thomas Joiner Administrative questons: e.g. problems with Mailbase etc, to: Ian Pitchford or depression-request@mailbase.ac.uk (mail to this address reaches both individuals). WHERE TO SEND PROGRAM COMMANDS: Mailbase Commands (subscriptions, retrieval of files, etc): Mailbase@Mailbase.ac.uk LEAVING THE LIST: Send a message to Mailbase@Mailbase.ac.uk (with no subject line) and the following command as the body of the message: Leave depression :::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: InterPsych __________ 'Depression' is a special interest group of InterPsych, a consortium of discussion forums, electronic publications, and other resources in psychiatry and abnormal psychology. To learn more about the various resources of Interpsych, send the following command to mailbase@mailbase.ac.uk send psychiatry InterPsych stop ********************************************************************** Document compiled 2nd May 1994 ********************************************************************** (4) ===== HOME VENTILATION ========== Date : Sun, 10 Jul 1994 23:59:23 EDT >From : MTDY51A@prodigy.com (MR TOM J WOOD) Subject: HOME VENTILATION TO ALL ALS PATIENTS: Mechanical ventilator therapy is available without having to have a tracheostomy. The patient uses the ventilator in home at their discretion. The ventilator works in conjunction with a custom nasal mask. There is absolutely no discomfort. Most patients sleep with the ventilator. The results of this treatment have been very impressive. It is not a life- support mechanism. It is a preventive maintenance approach to alleviate shortness of breath, improve quality of life, allow the patient to sleep through the night, prevent hospitalization related to respiratory crisis, and has proven to extend life expectancy when used daily as instructed. Treatment regimen is based on three support components: 1- Volume Ventilator via custom nasal mask 2- Supplemental oxygen 3- Positive Pressure breathing exerciser Patients experiencing shortness of breath and/or a Vital Capacity of 50% or less may be a candidate for this in-home breathing support. Set-up typically takes 2-3 hours as it is totally individualized. Equipment is virtually maintenance free with minimal risk of respiratory infection. For information on how to get started with this treatment contact: ALS Medical Attn: Tom Wood Phone 1-912-449-9001 day P. O. Box 756 1-912-284-1673 evening Blackshear, Ga. 31516 e-mail: MTDY51A@PRODIGY.COM (5) ===== Neurontin ========== Date : Tue, 12 Jul 1994 09:49:10 -0500 (EST) >From : JSRT_GO@PAVO.CONCORDIA.CA Subject: Neurontin My husband Bill, who is 53 years - 165 lbs -, is on Neurontin and we are in the midst of trying to work up the dosage to 900 mg per day (he is on 600 mg) When Bill was at 300 mg per day he had a sudden burst of energy for a day but returned to normal. Has anybody else had a similar experience of a burst of energy? Was it maintained? What was the dose? Thanks, Jean, :-) (6) ===== renewal ========== Date : Tue, 12 Jul 94 20:22:00 EDT >From : JENSEN@nervm.nerdc.ufl.edu Subject: Re: ALSD110 ALS-ON-LINE I have a lovely story which I would like to share with our ALS network. I thought Paul and I had at least another year together. I was wrong because he died in May, just one week after the faculty honored him with a wonderful retirement party. Although the ALS had claimed most of his strong, muscular body, he hadn't shown any bulbar signs yet. During the past two and a half years we filled our garden with plants to attact butterflies and birds. We wanteed to focus on the renewal of life and the beauty of nature. A couple of weeks before he died, I was moved to tell Paul, "If something happens to you, be sure to get in touch with me and let me know how you are." He looked at me as if I were a dipstick, but acquiesced with a tender smile. We had a beautiful service just at the hour of the solar eclipse. As we left the chapel and made a procession across the wide open field to his grave site, I thought to myself, "If only Paul would know how many people were her to support us." As if from nowhere, in the midst of the open space where only plastic flowers mark the grave sites, a beautiful large swallowtail came right up to me. Suddenly I understood, I knew that everything was in order. Best regards, Michelle (7) ===== Amex & biotechs ========== NEW YORK, July 12 /PRNewswire/ -- Five stocks in the American Stock Exchange's Biotechnology Index will be replaced, effective after the close of trading, Friday, July 15, to better reflect changes in the biotechnology industry. The five new stocks, C0R Therapeutics, Inc. (ticker symbol: CORR); Cellpro Inc. (CPRO); Cephalon Inc. (CEPH); Vertex Pharmaceuticals Inc. (VRTX); and Protein Design Labs, Inc. (PDLI), will replace XOMA Corporation (XOMA); Enzon, Inc. (ENZN); Regeneron Pharmaceuticals (REGN); Cytogen Corporation (CYTO); and Liposome Company (LIPO). The Amex said the change was made because the stocks to be dropped had fallen in price over time, and/or failed to meet the minimum market capitalization requirement of $75 million, or were no longer deemed representative of the biotechnology industry as a whole. Developed by the Amex in 1992, The Biotechnology Index consists of the most actively traded and highly capitalized biotech stocks. The stocks in the Index will include: Amgen Inc. Gensia Pharmaceuticals, Inc. Biogen, Inc. Genzyme Corporation Calgene Inc. The Immune Response Corporation Cellpro Inc. Protein Design Labs, Inc. Centocor Inc. Scios Nova Inc. Cephalon Inc. Synergen Inc. Chiron Corporation Vertex Pharmaceuticals Inc. COR Therapeutics CONTACT: Kathleen Fitzpatrick, Manager, Derivative Securities Communications, of American Stock Exchange, 212-306-1697 (8) ===== National Health Info Center ========== Date : Tue, 5 Jul 1994 00:43:33 -0500 (CDT) >From : Gleason Sackman To : net-happenings Subject: FEDGOVT> National Health Information Center e-mail publication ======================================================================== Subject: Catalog ------------------------------------------------------------------------ Catalog of Electronic Publications Available from the NATIONAL HEALTH INFORMATION CENTER (updated July 1, 1994) The National Health Information Center (NHIC) is a service provided by the Office of Disease Prevention and Health Promotion (ODPHP), Office of the Assistant Secretary for Health, Public Health Service, U.S. Department of Health and Human Services. In the spirit of "Americans Communicating Electronically" (ACE), which is a cooperative initiative among Federal agencies bringing information to the public in electronic form, NHIC and ODPHP have developed electronic versions of a number of frequently requested publications. This initial effort will be followed by expanded electronic dissemination within 90-120 days. All documents are formatted in ASCII text. Limitations of the e-mail system being used to deliver this information require that longer documents be divided into several messages; each message in a series is clearly labeled as such. To retrieve a document from the National Health Information Center, send an electronic mail message to: acenhic@oash.ssw.dhhs.gov Specify a document from the catalog below by including in your e-mail message the subject line associated with that document. An electronic mail message (or messages) containing that document will be automatically sent to you as a reply. For example, to retrieve the Surgeon General's Report to the American People on HIV Infection and AIDS, send the message To: ACENHIC@oash.ssw.dhhs.gov Subject: HIV/AIDS You would then receive 4 messages containing the 4 parts of the Surgeon General's report. We are also interested in learning from you how this service can be improved. Please send comments and suggestions to the same address, with the subject line "Comment" (note: do not use quotations). Documents currently available through ACENHIC: Title: 1994 National Health Observances Description: Health observances are months, weeks, or days devoted to promoting particular health concerns. This calendar lists selected health observances for 1994. Health professionals, teachers, community groups, and others can use these special times to sponsor health promotion events, stimulate awareness of health risks, or focus on disease prevention. Date Released: March 1994 File Size: 42 KB (sent in 3 parts) Subject Line: Health Observances Title: Federal Health Information Centers and Clearinghouses Description: The Federal Government operates many clearinghouses and information centers that focus on specific health topics. Their services include distributing publications, providing referrals, and answering inquiries. This document is a directory of Federal clearinghouses for health-related information. Date Released: March 1994 File Size: 40 KB (sent in 2 parts) Subject Line: Clearinghouses Title: Federal Prevention Activities fact sheet Description: Prevention is an important part of the mission of each Public Health Service (PHS) Agency. Listed in this document is the FY 1993 estimated distribution by agency of investments in prevention. Also noted is the contribution from other Department of Health and Human Services (HHS) agencies. Date Released: March 1994 File Size: 7 KB Subject Line: Prevention Activities Title: Healthy People 2000 fact sheet Description: HEALTHY PEOPLE 2000 is a national initiative to improve the health of all Americans through a coordinated and comprehensive emphasis on prevention. The cornerstone of this effort is a set of national health promotion and disease prevention objectives for the year 2000. This fact sheet describes the goals and objectives of Healthy People 2000 and lists the lead Public Health Service agencies responsible for each priority area. Date Released: March 1994 File Size: 13 KB Subject Line: Healthy People 2000 Title: National Health Information Center fact sheet Description: This fact sheet describes the services of the National Health Information Center Date Released: March 1994 File Size: 5 KB Subject Line: NHIC Fact Sheet Title: Nutrition and Your Health: Dietary Guidelines for Americans Decription: These guidelines help answer the question: "what should Americans eat to stay healthy?" They are advice for healthy Americans ages 2 years and over--not for younger children and infants, whose dietary needs differ. The guidelines reflect recommendations of nutrition authorities who agree that enough is known about diet's effect on health to encourage certain dietary practices by Americans. Date Released: March 1994 File Size: 35 KB (sent in 2 parts) Subject Line: Dietary Guidelines Title: Other Online Resources in Health-Related Fields Decription: This document is a table listing Bulletin Board Systems that provide health-related information. Date Released: March 1994 File Size: 4 KB Subject Line: Online Resources Title: Surgeon General's Report to the American People on HIV Infection and AIDS Decription: This report contains information on the status of the epidemic, how the AIDS virus is transmitted, how to protect yourself from HIV infection, living with HIV and AIDS, and how to help stop the spread of HIV and AIDS. Date Released: March 1994 File Size: 59 KB (sent in 4 parts) Subject Line: HIV/AIDS Title: Toll-Free Numbers for Health Information Decription: This document lists toll-free numbers and describes organizations that provide health-related information. The numbers do not diagnose or recommend treatment for any disease. Some offer recorded information; others provide personalized counseling, referrals, and/or written materials. Date Released: March 1994 File Size: 81 KB (sent in 5 parts) Subject Line: Toll-Free Numbers == end of als 111 ==