Date: Sun, 25 Dec 94 18:30:20 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#161 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#161, 25 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 == == 430+ 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 .. Holiday Wish 2 .. HAPPY HOLIDAYS 3 .. Managing ALS (Manuals for Patient or Family Member) 4 .. ALS Digest back issues via e-mail 5 .. Neurotrophic factor electronic journal 6 .. New WWW Server for Pharmacy 7 .. home care 8 .. EMF as risk factor for ALS (1) ===== Holiday Wish ========== Date : Fri, 23 Dec 1994 00:31:58 -0600 (CST) >From : Clive David Subject: Holiday Wish This is just a Seasonal wish for everyone participating in the group: Peace of mind and good health (within the limits ...) to you all. ============================ Clive David E-mail: cdavid@worf.uwsp.edu ============================ (2) ===== HAPPY HOLIDAYS ========== Date : Fri, 23 Dec 94 17:06:21 GMT >From : messinaa@ii1ss03.settimo.italtel.it (A. Messina +39 2 4388 8869) Subject: HAPPY HOLIDAYS Hi everyone! I'm writing to wish everyone in this group a happy Christmas and the best New Year they could hope for. In the past five months I've learned a lot from the people who join this group. At the beginning of August I posted an article on some newsgroups, looking for everything could help me to help the father of a friend of mine, in Italy. Tons of people answered and gave me suggestions and the address of this group. Through all these contacts, I could talk to parents and relatives and friends of people diagnosed with als, and sometimes people diagnosed contacted me, too. Using the information gained through all these contacts, I've been able to help my friend's father and give his family little bit of joy in seeing how people are kind and generous toward other people. Now I'm back in Italy and I'm still in contact. I would like to thank all of you, and especially two families in Florida and some people in Denver, CO. I don't want to mention their names, but I'm sure they'll remember... Both the families in Florida have their young guys diagnosed with ALS, but they never missed the hope and the will to help other people. Let's learn from them and keep in touch to try and help each other as much as we can. THANKS, HAPPY CHRISTMAS AND A NEW YEAR FULL OF GOOD NEWS! FROM: Alessandro Messina Italtel-SIT BUTR-RS-SF Nuovo Prefa CI1B 20019 Castelletto di Settimo Milanese (MI) - Italy Ph.: 011-39-2-43887450 (W) ; 011-39-2-9609310 (H) Fax: 011-39-2-43888549 e-mail address: messinaa@settimo.italtel.it (3) ===== Managing ALS (Manuals for Patient or Family Member) ========== This five volume set of manuals is available from: The ALS Association; 21021 Ventura Blvd., Suite 321; Woodland Hills, CA 91364; TEL 818-340-7500. Free copies (pay only the $3.00 handling charge per manual) will be mailed to those who are entered into the ALS Association's PATIENT REGISTRY. For information about their Patient Registry please call or write to them. ----- VOL 1 Finding Help. (28 pages, normal cost $10) A realistic introduction for patients and family members coping with ALS. Stresses the importance of reliable, current information about the disease. ----- VOL 2 Managing Muscular Weakness (270 pages, normal cost $40) Keys on the difficulties in walking and full muscle use of ALS patients. Includes information on exercises, assistance devices, etc. ----- VOL 3 Managing Breathing Problems (104 pages, normal cost $25) Covers the importance of preventative measures needed to maintain optimal lung capacity. Discusses direct breathing aids when breathing muscles weaken. ----- VOL 4 Managing Swallowing Problems (79 pages, normal cost $20) Suggests types of food and proper body alignment to help alleviate swallowing difficulties. Discusses alternative methods of eating and nutrition as swallowing difficulties progress. ----- VOL 5 Solving Communication Problems (77 pages, normal cost $20) Discusses ways for ALS patients to prolong speaking ability through such methods as slower articulation and palate lift. Augmentative communication techniques are detailed, including eye mevement, communication boards, and special computer programs. (4) ===== ALS Digest back issues via e-mail ========== Thanks to Stuart Neilson and his coworkers at Brunel University, back issues of the ALS Digest are available via the World Wide Web at URL: http://http1.brunal.ac.uk:8080/~hssrsdn/ and they are available via anonymous FTP at: src.brunel.as.uk , in the directory "cshsd/alsig/archive". And by using the following scheme the back issues can be retrieved by e-mail. ==== = mail ftpmail@ftp.shsu.edu = Subject: (ignore this line) = open src.brunel.ac.uk = cd cshsd/alsig/archive = get alsd001.txt = get alsd100.txt ==== A brief explanation. send mail to: ftpmail@ftp.shsu.edu ignore the subject line in the first line of the message, write: open src.brunel.ac.uk in the second line of the message, write: cd cshsd/alsig/archive if you want ALS Digest issue 1, type: get alsd001.txt if you want ALS Digest issue 100, type: get alsd100.txt Enter as many of these as you want. Back issues will be e-mailed to you as separate messages. Please note that a few issues have not yet been installed. They are: alsd018a.txt, alsd018b.txt. alsd033.txt, alsd035.txt, and alsd120.txt. If anyone has these issues, please mail them to: Stuart.Neilson@brunel.ac.uk Also, ALS Digest 144 is in two parts: alsd144a.txt and alsd144b.txt That should do it. We all owe a big thank you to the Brunel folks! rgds,bro (5) ===== Neurotrophic factor electronic journal ========== >From : pjd2@smtp.cwru.edu (Pedro J. Diaz) Subject: Re: ANNOUNCE: Neurotrophic factor electronic journal Date : Thu, 22 Dec 94 13:05:03 EST This might be of interest to the als list. > >I would like to announce that I have established an informal >electronic journal for neurotrophic factor research, called >"The Neurotrophin Homepage". > >It may be accessed by the World Wide Web (WWW) protocol at this >URL: http://mab.physiol.washington.edu/nrotrphn/nthompag.html. > >Feel free to browse, or to submit material for publication. > >The journal is currently under construction. It will grow over >the next few months. > >Comments and suggestions are welcome, by mail or E-mail. > >Mark Bothwell >Dept. of Physiology & Biophysics >SJ-40 >University of Washington, >Seattle, WA 98195 > ==== = E-mail: mab@u.washington.edu (Mark Bothwell) ==== (6) ===== New WWW Server for Pharmacy ========== Date : Fri, 23 Dec 1994 09:17:00 EST Sender : "Clinical WANS: Design & Usage" : >From : "Peter M. Weiss +1 814 863 1843" Subject: fwd: PharmWeb - A New World Wide Web Server for Pharmacy This is a re-post from Usenet Pete-Weiss@psu.edu - - The original note follows - - >From : ajd@dir.mcc.ac.uk (Antony D'Emanuele) Newsgroups: comp.infosystems.announce Subject : PharmWeb - A New World Wide Web Server for Pharmacy Date : 20 Dec 1994 14:58:02 +0000 A new pharmacy world wide web server called PharmWeb has been established at the Department of Pharmacy, University of Manchester. The URL of the index page is: http://www.mcc.ac.uk/pharmacy/ PharmWeb is intended to be a pharmacy information resource and link to other pharmacy servers on the Internet. It includes information on academic institutions, companies, societies, mailing lists, newsgroups, plus lots more. There are over 40 pages written with more planned. Could you please circulate this message within your site and to colleagues who may be interested. Thanks -- Tony D'Emanuele Manchester ajd@dir.mcc.ac.uk http://www.mcc.ac.uk/pharmacy/ (7) ===== home care ========== Source: The San Diego Union-Tribune 12/17/94 Title : Luis is going home smiling Byline: RONALD W. POWELL Terminally ill hospital patient Luis Vasquez is finally getting his wish: He is going home. He is expected to leave Sharp Coronado Hospital for his family's Normal Heights home as early as Wednesday. The journey will end months of anxious waiting for Vasquez, a 22-year-old father of two. Following a lengthy examination of Vasquez's case, Medi-Cal is approving his in-home care as part of a pilot project. He may remain at home, receiving care from visiting nurses and his family members, as long as a physician believes he is receiving proper treatment. Luis Vasquez suffers from amyotrophic lateral sclerosis, a degenerative disease of the nerve cells that control muscular movement. Now, he is unable to use his arms or legs. His speech is labored. He depends on a ventilator to breathe. In an interview with the Union-Tribune in late October, Vasquez said he did not know how much time he had left, but his wish was to live the rest of his life at home with his family. While sympathetic, Medi-Cal officials said Vasquez did not meet requirements for programs the state medical insurance system has for in-home care. While the guidelines have yet to be completed for statewide application, Vasquez is being allowed the home-care benefit. Before Vasquez leaves the hospital, his family members -- including Lillian, his mother, Maria, brother, Andy, and sister, Andrea -- will receive CPR training, as well as instruction in operating the ventilator, Vasquez's lifeline. Yet Lillian says news of his impending return home has given Luis the biggest boost he has had since entering the hospital last spring. It will give him what he wants most as the precious days of his life slip away -- the chance to be with his wife and sons Luis Angel, 1, and Elijah Alonzo, one-month, at home. (8) ===== EMF as risk factor for ALS ========== Date : Thu, 7 Jul 1994 16:29:30 -0400 >From : afrey@uunet.uu.net (Allan Frey) To : emf-bio@net.bio.net Subject: Amyotrophic lateral sclerosis I'm posting this with the authors' permission. Neuroepidemiology (in press) Amyotrophic lateral sclerosis and occupational exposure to electromagnetic fields. Z. Davanipour (Loma Linda Univ.) et al Our aim was to determine whether occupational exposure to electromagnetic fields (EMF) is a risk factor for amyotrophic lateral sclerosis (ALS). IgG antibodies to specific calcium channels in motor neurons have been found in sporadic ALS cases, but essentially not in controls or familial ALS cases. An association between electrical occupations and ALS has been demonstrated, but specific relevant exposures are not known. EMF can elicit cellular changes that may affect immune system function. Lifetime occupational histories for clinic-based ALS cases (n = 28) and family controls (n = 32) were collected. High ( =3), medium ( =2), or low ( =1) EMF exposure was assigned to each occupation. Average (lifetime exposure divided by number of years worked) and lifetime (sum of years of exposure x exposure level) occupational EMF exposure indices were constructed. For subjects with at least 20 years of occupational experience (21 cases and 30 controls), the odds ratios for average and lifetime EMF exposure were 9.40 (p<0.03) and 1.03 (p<0.03) respectively, per unit of change of the exposure index. The odds ratios for exposure one standard deviation above the mean relative to minimun exposure were 5.7 (p<0.03) for average exposure and and 2.9 (p<0.03) for lifetime exposure. For all subjects, the odds ratios were 4.7 (p<0.06) for the average EMF exposure index and 1.01 (p=0.30) for the lifetime exposure index, per unit of change of the exposure index. Our data indicate that long-term occupational exposure to EMF may be a risk factor for ALS. === end of als 161 ===