Date: Thu, 24 Aug 95 23:33:51 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD208 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#208, 24 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 == == 930+ 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 .. Editorial 2 .. ALS Survey -- Second announcement. 3 .. IGF-1 4 .. Coffee and ALS symptoms 5 .. Questions 6 .. Communication Aid 7 .. Flu Shots and Drug Trials 8 .. Internet Medicine Guide Update 9 .. New UK Neuroscience WWW site (1) ===== Editorial ========== Issues 209 and 210 will be sent out this weekend. Thanks to all of you for your participation. rgds,bro (2) ===== ALS Survey -- Second announcement. ========== >From : Jerry Belsh Subject: Second announcement on ALS survey Date : Thu, 24 Aug 1995 10:18:51 -0400 (EDT) This is our second announcement on the ALS Digest about our survey. The response to our first announcement, in early July, was excellent, but we know that many new people have since subscribed. We appreciate all of those who have responded, and encourage others to communicate with us. Thank you for also passing this note to the Prodigy ALS discussion group. We are currently conducting an epidemiological survey of ALS patients via e-mail. Our Center has done previous studies relating to ALS, but the present research project is particularly interested in the patient's perspective. The survey consists of about 30 questions related to the ALS patient's diagnosis and management; they require short answers (usually the fill-in type). If you are willing to participate in this survey, or know an ALS patient who would be willing to complete the survey, please reply to us via e-mail at: als@umdnj.edu We will then send each individual respondent the full questionnaire with instructions by return e-mail. You can be assured that all information will be held in strictest confidence. Data that might identify individual participants will not be released. Thank you for your interest. Elizabeth Lee, R.Ph., Patient Care Coordinator Neuromuscular & ALS Center University of Medicine & Dentistry of New Jersey Robert Wood Johnson Medical School New Brunswick, NJ 08903 -- Jerry Belsh M.D. Internet belsh@umdnj.edu Department of Neurology Tel: (908) 235-7340 UMDNJ-Robert Wood Johnson Med School Fax: (908) 235-7344 97 Paterson Street New Brunswick, NJ 08903 (3) ===== IGF-1 ========== Date : 17 Aug 95 08:53:20 EDT >From : Scott Veggeberg <72124.2314@compuserve.com> Subject: ALSD200 ALS-ON-LINE I am a science writer and book author working on an article for New Scientist--a British science magazine--about body builders using IGF-1 as a potent anabolic agent. It's getting onto the black market after being purchased legitimately from biochemical supply houses. As most of you know, IGF-1 has also been the subject of successful phase III clincial trials by Cephalon, Inc. of West Chester, PA, as a new treatment for ALS. In fact, I would think a number of subscribers have already been treated with IGF-1 as part of these trials. The problem for ALS sufferers is, of course, that IGF-1 is not available for compassionate use as is Rhone-Poulenc Rorer's Riluzole. My question is whether anyone has or knows anyone who has attempted to get ahold of and use IGF-1 purchased in the same way as the body builders? I AM NOT from the FDA or any such law enforcement organization trying to shut down this channel for IGF-1. And as far as I know, IGF-1 is not a controlled substance and this sort of diversion is not illegal at this time. I can assure anyone who needs it complete anonymity in the article I'm writing. Answer here or for greater anonymity directly by email (72124.2314@compuserve.com) or telephone (610)-328-1469. Scott Veggeberg (4) ===== Coffee and ALS symptoms ========== >From : Fulco_L Subject: Coffee and ALS symptoms Date : Mon, 14 Aug 95 14:30:00 EDT In the middle of a long stint at the keyboard, I had a nice cup of fresh espresso. Afterward, I noticed an improvement in the speed and accuracy of my typing. The next day, my wife served espresso to a visitor and me, and remarked that my speech improved afterward. Has anyone else noticed this effect? I'm 54 now, diagnosed 21 months ago. Larry Fulco Fulco_L@BLS.GOV (5) ===== Questions ========== 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. 2) I have been told by several physicians and nurses that my problem with excess saliva is caused by my inability to clear saliva rather than from me producing more saliva now than I used to. There is no doubt that "clearing" is a problem, but I STRONGLY believe I produce more now as well. Agree/disagree? 3) I also think I have a huge appetite for someone who does nothing to burn off calories. I eat more now than I did when I was working full time, helping take care of two children under 4, and refurbishing a fix-me-uper home. Now I am slowly losing weight, whereas before I had to somewhat keep an eye on what I ate. Any responses?? Any other PALS with similar experiences? Thanks, Mike Bertschy hfryauf@blue.weeg.uiowa.edu (6) ===== Communication Aid ========== Date : Tue, 15 Aug 1995 23:03:12 EDT >From : TDVT81A@prodigy.com (MR MARSHALL D PINES) Subject: Communication Aid Here is a "donationware" program that may be useful to someone who has lost their speech or who is headed down that path. Enough finger dexterity to use a keyboard is needed. SpeakEasy SpeakEasy is a personal computer program designed to address a prohibition somewhat different from that suggested by its name. It is a communication aid for a speech impaired person. SpeakEasy developed as a family project. Dad has a motor neuron disease and lost his ability to speak in the course of the disease. Son is particularly versatile in personal computers. The first attack on solving the communica- tion challenge was to explore existing commercially available programs. These have features such as single switch input, word predictors, keyboard modifications, etc. Nice stuff, but fortunately Dad can still use a keyboard, so these goodies tend to be more a hindrance than a help. We developed a simple, straightforward program which can be used until the disease progression dictates one richer in function. Again, enough finger dexterity to use a keyboard, even one finger at a time, is required. Experience with SpeakEasy has indicated that one can approach the rhythm of normal conversational interaction. And with a speaker phone, telephone calls become possible. Basic Operation The program has an input area on the screen for entering a phrase, sentence, paragraph or thesis which is to be spoken. With the touch of the "Enter" key or by a mouse click, the text is converted to speech, and sent to a voice synthesizer which conveys the message in melliflous tones. Pronouncements of lasting value can be saved by the program. In this way a library of prose can be developed and called upon when the appropriate occasion arises. The material can be organized by topics, such as greetings, bad jokes, political pronouncements, requests of caregiver. The basic SpeakEasy screen displays the topics and when a topic is selected, the first line of the phrases within the topic is shown. Selecting a phrase will bring it to the input area and an "Enter" key depression or mouse click will "speak" the text. The ability to add, modify and delete topics and phrases is included in the program. There are limits to the number of topics and to the number of phrases within a topic. So far this has not been a problem, because we haven't reached a limit yet--or have considerable excess disk capacity. Currently there is a limit of 1024 characters of text in a phrase. Text can be brought to SpeakEasy from other applications using Windows "cut and paste" techniques. Thus, text prepared on a word processor or received by electronic mail can be spoken. Program Features "Hot" keys: The program function keys are set up as "hot" keys. Commonly used phrases such as "thank you", or "please hold for a moment while I key a response" can be "spoken" with the single depression of a program function key. Twelve phrases are possible. Stop at end of sentence: A text containing many sentences can be spoken one sentence at a time. Speech can be stopped at the end of the sentence to await a response from the listener. Also a sentence can be skipped, or the sentences can be spoken in any order. Search: The entire library of text can be searched for a particular word or a string of characters. The first line of all phrases containing the word or character string will be displayed. Voice control: The volume, speed, and pitch of the voice can be varied. Multiple phrase libraries: You may want to build a completely separate library of topics and phrases for a unique environment. Or you may have so many topics established that you'd like to split them up. SpeakEasy will easily handle multiple libraries. System Requirements SpeakEasy is written for IBM or IBM compatible personal computers. It runs with Windows V3.1, although it will probably run under Windows V3.0. Four megabytes of RAM storage is adequate. Actually, any configuration that can run Windows should suffice. A pointing device (mouse) is nice, but not a requirement. The screen looks good in VGA mode, but it should work in EGA as well. SpeakEasy requires a sound card and a text to speech program called Monologue for Windows, a product from First Byte. Monologue is included free with IBM's PCMCIA 16 bit audio adapter, and with their multimedia PCs. SpeakEasy should run with any sound card supported by Monologue, but no others have been tested. At some point we may be able to make SpeakEasy run with other audio implementations, such as SoundBlaster. However, at present there are no plans for doing so, since we have no way of testing. You can run SpeakEasy without Monologue or the sound card to see how it works, but you will not be able to make it talk. A notebook computer is a good choice. It can easily be carried around the house, off to visit friends, or to meetings. Distribution The program is available at no charge to any ALS patient. For others, we request that a donation be made to: Les Turner ALS Foundation 3325 Main Street Skokie, IL 60076 708/679-3311 The most convenient way to obtain the program is to download it from the Internet. Contact either of the names below for instructions. Alternatively, an installation diskette and instructions may be obtained by contacting the Turner Foundation. Although not mandatory, a donation to cover the cost of distributing the program would be welcomed by the Turner Foundation. For either method of distribution a combined tutorial, program description manual, and help text is included. The program is distributed without support. However if you send us an E-mail or contact us through the Turner Foundation, we will try to inform you of program updates. Suggestions on program improvements are welcomed, as are offers to assist in testing sound cards other than the IBM audio adapter. E-mail ids are shown after our names. Marshall Pines TDVT81A@ prodigy.com Jeff Pines jmp@tezcat.com August 15, 1995 (7) ===== Flu Shots and Drug Trials ========== Date : Wed, 16 Aug 95 18:36:19 EDT >From : pjones04@colybrand.com (Paul D. Jones - San Francisco ) Subject: Flu Shots and Drug Trials I have a question relating to cause and two questions relating to treatment. 1. cause - A doctor told a friend who is an ALS patient (non-confirmed diagnosis) that her ALS could have been caused by a flu shot. Does anyone have further information on this potential cause? 2. treatment - Assuming the diagnosis is confirmed, my friend wants to participate in a drug trial that does not use placebos. She is willing to be a test subject, but she does not want to put her hopes in a sugar cube. Do any programs / trials (in the US or elsewhere) not use placebos? Are any of the recognized "trial treatments" available ( in the US or elsewhere) without participation in a trial? Thanks, Paul. (8) ===== Internet Medicine Guide Update ========== Date : Thu, 17 Aug 1995 13:23:34 CDT >From : Gary Malet Subject: NEW: INTERNET MEDICINE GUIDE UPDATE ****************** MEDICAL MATRIX ****************** Version 2.8, 10 August 1995 American Medical Informatics Association Internet Working Group Dr. Gary Malet, gmalet@surfer.win.net Jim Martindale, Virtual Med. Ctr., jmartindale@vmsa.oac.uci.edu Lee Hancock, LE07144@UKANVM.CC.UKANS.EDU ******************************************************************** A carefully edited, extensively updated text version of Medical Matrix (formerly "The Medical List") is now available from the University of Michigan Clearinghouse for Subject Oriented Guides gopher://una.hh.lib.umich.edu:70/00/inetdirsstacks/medclin:malet ---------------------------------------------------------------------- Medical Matrix is a database of clinical medicine Internet resources. This new and improved version categorizes resources by diseases, specialties, interest areas, learning modules, interactive forums, and mailing lists. More than 100 new entries have been added since the June 1995 version. Medical Matrix gives text descriptions of resources, spotlights the more developed programs, and gives news and backround on Internet medical resource development. Medical Matrix is available in a Mosaic, hypertext, Internet linked format at: http://kuhttp.cc.ukans.edu/cwis/units/medcntr/Lee/HOMEPAGE.HTML Hypertext linked Medical Matrix resources are announced and archived at: http://www.med.uni-muenchen.de/urls.html ************************************************************************** ** Dr. Gary Malet, Family Physician, Stockton,Ca, gmalet@surfer.win.net Healthtel, Inc.- Email Medical Information Services "Traditional Medical Librarianship for a Digital Age" URL:http://www.cts.com:80/~drcarr/HEALTHTEL/htel.html VOICE 800-650-3302/FAX 209-466-0502 ************************************************************************** ** (9) ===== New UK Neuroscience WWW site. ========== Newsgroup: bionet.neuroscience: >From : J.G.Bloggs@bham.ac.uk (Joe Garth Bloggs) Subject : NEW UK NEUROSCIENCE WWW SITE Date : 18 Aug 1995 13:56:00 GMT We have recently set up a neuroscience WWW page at Birmingham University (http://medweb.bham.ac.uk/http/depts/clin_neuro.html) (or http://medweb.bham.ac.uk/clin_neuro.html). Our purpose is primarily to act as an easy means of access to a wide variety of neuroscience sites on the Web for all those interested in neuroscience- physicians, researchers and patients (as mentioned in the BMJ letters section a month or so ago- although the BMJ managed to get our URL wrong). We are currently developing some neurological teaching material, including on-line assessment, tutorials on various conditions (eg Parkinsons' disease) with video clips demonstrating Parkinsonian gait etc. You will need a copy of Apple's Quick Time 2.0 to view the video clips. If you have a WWW site that you feel should have a link on our page, please e-mail me. Finally, I must emphasize that neither I, nor the other neurologists in our department, will engage in direct dealings with individual patients. This is NOT because we are being unsympathetic, but if people have a problem that they are concerned about, this is best dealt with by SEEING a physician locally. Yours Sincerely Dr David Nicholl e-mail: d.j.nicholl@bham.ac.uk Research Registrar Dept of Neurology Queen Elizabeth Hospital Birmingham UK === end of als 208 ===