=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#114, 30 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 == == 290+ 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 .. Profile 2 .. AIR TRAVEL 3 .. Nerve Growth Factor 4 .. PC technology 5 .. GUAM & ALS 6 .. selegiline & ALS 7 .. DECtalk Speech Synthesizer 8 .. HAHNEMANN ALS CENTER 9 .. re: what can I do to help? (1) ===== Profile ========== >From : MRSRE@aol.com Date : Sat, 23 Jul 94 22:12:47 EDT Subject : Profile My name is Judy Repass and I have been married to my husband, Charlie since I was 19. In January of 1975, I first began showing weakness in my index finger of my left hand. By October, the diagnosis was confirmed to be ALS. By that time my other hand was becoming involved. I was 27 when my first symptoms began. Soon after I began having weakness in both legs. My doctor gave me 2 years to live. In 1975 there were no experimental drugs and very little research was being done. The following year, I heard about a doctor in Florida who was treating ALS patients with injections of detoxified snake venom. I had no other choice but to try to get into the program. While in Florida I saw hundreds of people from all over the world hoping for a miracle. I took the injections for 2 years but the serum was proven to be ineffective in the treatment of ALS. In 1979 I developed pneumonia and had a respiratory arrest while in the hospital. I was not expected to recover. I fooled them; I fooled everybody. I had a tracheostory performed and spent 3 months in the hospital. I lost about 40 lbs, weighing in at 108 which made by 6 ft frame look emaciated. I went home with 24 hour nursing care. I was on humidified oxygen. I wasn't ready for a vent; that came later in 1988. It changed by life. I had not been able to eat very much before then. I went crazy with banana splits and hot fudge sundaes. I ballooned up to 195 lbs which made my nurses groan. I have managed to get down to about 150 lbs which is a good weight for me. My nurses are much happier and so is my husband. I have managed to turn the tragedy of having ALS into a triumph. I have beaten the odds. I live a very full life. I manage my house, pets and run the show. I am writing a book about my experiences. I have a very positve outlook and have supportive friends and family, especially my husband, Charlie. It has been nearly 20 years since my symptoms began and we have fought ALS together, and we are not giving up. Judy. (2) ===== AIRTRAVEL ========== Date : 29 Jul 94 12:18:44 EDT >From : RON LEEB <72613.2113@compuserve.com> Subject: AIRTRAVEL Can anyone tell me if its safe for a person with ALS to fly, i.e., breathing. I'm not on a resporator and I'm planning a trip to Anchorage and Homer, Alaska, for some R & R, i.e., fishing. Thank You--Ronn (3) ===== Nerve Growth Factor ========== Date : Thu, 28 Jul 1994 22:21:19 -0500 (EST) >From : JSRT_GO@PAVO.CONCORDIA.CA Subject: Nerve Growth Factor (which is a protein) I've just been reading an article in the Montreal Gazette, 27/7/94, of a protein (NGF) which is being experimented with to rescue, in mature nervous systems, sick neurons. Dr. Ted Ebendal from Sweden's Uppsala University has experimented with six patients, three suffering from Parkinson's, two from Alzheimer's and one from Huntington's. All six benefited. I wonder if there are any NGF experiments involving ALS patients? (4) ===== PC technology ========== >From : BillB67399@aol.com Date : Sat, 23 Jul 94 21:15:55 EDT Subject: PC technology I am searching for some advice concerning PC software and hardware for my father, who has ALS. He has never used a PC before and today I showed him a laptop, which he was very interested in. Since he isn't able to type because of the weakness in his arms and hands, I want to look into a voice recognition system for him-connected to a laptop. He wants to be able to do a few things with the computer. First, while he is a retired sales rep, he would still like to be able to keep himself a little involved in his line of work. He would like to be able to dictate short memos to the computer during telephone conversations since his ability to write has deteriorated greatly in the last couple of months. He would also like to fax from the laptop (I think a laptop would be good for him since it is so compact and easily transportable). Is anyone using a voice recognition system that they could recommend? The fax issue is less complicated, but any recommendations here as well would be appreciated. Additionally, he would really like to continue to write checks, but again, he can't write easily or for long periods without exhausting himself. Does anyone know of a software program that would automate this process for him except for his signature? Any suggestions you could send my way would be very much appreciated. Thanks. Debra (5) ===== GUAM & ALS ========== Date : 23-Jul-94 15:47 EDT >From : Grant L. Nicholas [74000.1616@compuserve.com] Reply to: GUAM & ALS Hello Ron, Gosh, it's been a while since we shared thoughts. Sorry for my dropping out. I really burned myself out with the INDEX for the first 75 digests, and haven't really climbed back on the horse yet. Ron, I admire your strength and courage. I know that I'd be so busy feeling sorry for me that I couldn't operate at all. Did I share with you any of my talk with the director of the NIH Neuromuscular Research Department? I was trying to get an Advanced Prosthetics Initiative going earlier this year and had a lot of opportunity to hit up folks for information, and I had a 15-20 minute phone conversation with this gentleman (his name is on notes at work & I'm home). We talked about ALS, and I brought up your belief and theory of the castor-bean being a cause. His answer was that there is every possibility that it is the cause of a disease, but not ALS. I was stunned by his dismissal of your idea. Then he said "By definition ALS is a neuromuscular disease for which there is no known cause. As soon a cause-effect relationship is established for a set of circumstances, a name is give that cause-effect relationship (i.e., Kennedy's disease), and the identified disease is no longer ALS." Just a tidbit on my trail of life. The prosthetics thing fell on its butt. Dad is not doing well. He was in the Synergen CNTF trials, and from his reactions and those reported from folks in the REGENERON study, he was getting a big (possibly SYNERGEN's biggest) dose CNTF. His condition had stabilized, if not improved. His strength in the tests remained stable, his breathing actually improved month by month. He had stopped taking his diuretic during this time, his ankles didn't swell and his blood pressure was great. In general he was feeling great. It has been seven weeks since his last injection and he is hardly able to walk. He went from a fair degree of mobility, to a walker, to a wheel chair in this short time. His arms and hands have lost an enourmous amount of strength. He is no longer able to bathe himself, and has fallen down four times. His ankles are swollen, and he's back on the blood pressure medicine and the diuretic too. We've become involved with the Albuquerque ALS Support Group, and are grateful for the abilities and strengths Dad still has. We think the trials neurologist has been a little less than candid about when and if SYNERGEN is going to continue the trial. When viewed from what REGERON has decided, and the SYNERGEN talk of selling out, it isn't too hard to figure what is ahead. I will see Dad next Tuesday, and I'll ask him about the use of the beans as a laxative. I let you know what his resonse is. Ron, being as I ran off at the keyboard and added a lot of info that may be of use to others, I've taken the liberty of copying Bob Broedel. Bob, edit this as you'd like, but I think the change in Dad's condition since the last injection is news to share. Fondest regards, Grant Distribution: To: RON LEEB > [72613.2113@compuserve.com] (6) ===== selegiline & ALS ========== =============================================== Title : An open-randomized clinical trial of selegiline in : amyotrophic lateral sclerosis. Author : Mazzini L; Testa D; Balzarini C; Mora G Source : Journal of Neurology 1994 Feb;241(4):223-7 Abstract : Based on the hypothesis that free radicals play a general role in the neurodegenerative process in motor neuron disease, we tested selegiline in a group of patients affected by amyotrophic lateral sclerosis (ALS) to examine whether it might modify the progression of the disease. Patients were admitted if they were 25-80 years old and had a confirmed diagnosis of ALS with symptoms lasting no longer than 24 months. Patients with familial ALS, pure progressive bulbar palsy, primary lateral sclerosis or progressive muscle atrophy were excluded; a total of 111 patients were recruited. Fifty-three patients were randomly assigned to receive the drug (selegiline 10 mg/day orally for 6 months) and the remaining 58 were considered ALS controls. Mortality was similar in the two groups (4 and 5 patients respectively), though the difference was not statistically significant. Among the survivors, mean MRC and Norris disability scores and forced vital capacity were fairly similar in the two groups at all times and no statistically significant difference between treated and untreated patients was found. The results did not change when the data were related to age, duration and characteristics of onset of the disease. The rate of progression was significantly more rapid in patients with bulbar symptoms in both groups. Our data do not show any significant effect of selegiline in modifying the progression of ALS. =============================================== (7) ===== DECtalk Speech Synthesizer ========== X-Listname: "Muscular Dystrophy - Patients, Family, & Friends" : Date : Wed, 13 Jul 1994 01:56:35 -0700 >From : "Ray Harwood -- Data Basix: (602)721-1988" : Subject : DECtalk Speech Synthesizer Announcement I received the following announcement from the Digital Equipment Corporation ress release mailing list. It may be of interest to some list members. ======================================================================== Subj: Press/Digital Introduces DECtalk Express Speech Synthesizer To: Digital Press and Analysts News: ; |||||| Digital Press and Analysts News |||||||||||||||||||||||||||| Digital Equipment Corporation Maynard, Massachusetts 01754-2571 Editorial contact: Michael Dodson (508) 493-0293 DIGITAL INTRODUCES DECTALK EXPRESS SPEECH SYNTHESIZER New Lightweight, Portable Speech Synthesizer Designed for Use at Work, Home, In Transit MAYNARD, Mass. -- July 12, 1994 -- Strengthening its commitment to physically challenged customers, Digital Equipment Corporation today announced DECtalk Express Speech Synthesizer, a lightweight, portable speech synthesis product providing expanded PC capabilities for individuals who are blind or visually impaired or have learning disabilities. The DECtalk Express Speech Synthesizer -- when used in conjunction with one of many supporting software applications and any one of a broad range of computing platforms -- converts ASCII text to synthesized speech output, allowing users to hear computer monitor screen contents, database contents and other text communicated via high-quality, natural-sounding DECtalk speech. The product provides users access to a wide range of computer applications, including word processing, spreadsheets, electronic mail and database applications. In other areas, DECtalk Express Speech Synthesizer may be used for text-to-speech applications in education, entertainment, personal use and other markets for non-telephone based speech synthesis via external audio output. Portable Unit Features Many Options The portable, lightweight unit -- weighing less than one pound and measuring 3.6" wide by 7.6" long by 1.25" high -- is designed for use in the workplace, at home or in transit. Accessories -- such as a carrying case and Braille labeling -- facilitate transportation and ease-of-use, and were designed with the needs of individuals with disabilities in mind. Other DECtalk Express Speech Synthesizer features include (depending on software applications): o nine natural-sounding and highly intelligible predefined voices (four male, four female and one child) o 75 to 650 words-per-minute speaking rate range, allowing for uses from slow spelling to fast scanning o user volume control o comprehensive pronunciation rules and controls for pauses, pitch and stress, providing enhanced naturalness and accuracy of spoken text o speech options, providing users the choice of having text spoken by letter, word or phrase and having some, none or all punctuation pronounced o large integrated word dictionary o word-by word indexing that allows for a direct match between screen viewing and spoken text o start-up and installation information in large print and on an audiocassette tape DECtalk Express Speech Synthesizer is equipped with a serial port for connecting to PCs, allowing for use across a variety of computer platforms, such as IBM compatibles, laptops, notebooks, palmtops, workstations and Apple or Macintosh computers. "Based on the popularity of DECtalk speech synthesis products, we responded to a a genuine need for this same technology in a portable application," says Ed Lazar, Manager of Digital's Assistive Technology Group. "In addition to addressing needs across many commercial markets, DECtalk Express Speech Synthesizer offers increased independence and flexibility to PC users who are blind, vision impaired or have learning disabilities. We've taken the same unparalleled high-quality level of DECtalk speech and developed a portable, lightweight unit that provides our customers access to any number of office and home applications and uses." Lazar also notes that DECtalk Express Speech Synthesizer is a cost-effective solution for companies who wish to comply with the Americans with Disabilities Act (ADA), which places greater responsibility on employers to provide workplace accommodations for employees who are physically challenged. Pricing and Availability DECtalk Express Speech Synthesizer is available now in the United States, and may be ordered through DECdirect and Desktop Direct by calling (800) 344-4825 or (800) 722-9332. Pre-purchase technical assistance may be obtained by calling 1-800-722-9332. DECtalk Express Speech Synthesizer is also available through a network of Digital's Assistive Technology Value-Added Resellers. The unit retails for $1195. Accessories include a carrying case, headphones, a nine-pin RS232 connector, a two-foot cable and an external power wall cube. A one-year warranty is included. Digital Equipment Corporation is the world's leader in open client/server solutions from personal computing to integrated worldwide information systems. Digital's scalable Alpha AXP platforms, storage, networking, software and services, together with industry-focused solutions from business partners, help organizations compete and win in today's global marketplace. #### Note to Editors: Digital, the Digital logo, Alpha AXP, DECdirect, Desktop Direct, DECtalk and DECtalk Express Speech Synthesizer are trademarks of Digital Equipment Corporation. CORP/95/535 =================================================================== Electronic Editorial Contact: michael.dodson@mlo.mts.dec.com =================================================================== Digital Press and Analysts News is sent as a courtesy to members of the press, analyst and consulting community. For subscription information please contact: Russ Jones Digital Equipment Corporation Voice: 415-853-6566 FAX: 415-853-6537 Internet: pr-news@pa.dec.com All Digital press releases, fact sheets and backgrounders are archived on ftp.digital.com in the /pub/Digital/info/pr-news directory. ===================================================================== (8) ===== HAHNEMANN ALS CENTER ========== PR NEWSWIRE Monday July 25, 1994 PHILLIES FAMILY TO VISIT HAHNEMANN ALS CENTER Event: Members of the Phillies family gear up for their annual Autograph Party and Auction by visiting their designated charity, the ALS Center of Hahnemann University. Phillies' wives and members of the Phillies staff will tour Hahnemann's ALS (Amyotrophic Lateral Sclerosis) Clinical Services Center, visit with patients and families, then enjoy lunch with the Center's staff. Date: Tuesday, July 26 Time: 10:45-11:45 a.m. Place: ALS Clinical Service Center of Hahnemann University, 1427 Vine St. (across from Hahnemann University Hospital), Philadelphia Personnel: Members of the Phillies Baseball Club and their wives, including: -- Nancy Giles (wife of Phillies President William Giles) -- Laurie Incaviglia (wife of Pete Incaviglia) -- Peg Morandini (wife of Mickey Morandini) -- Tracy Ready (wife of Randy Ready) -- Shonda Schilling (wife of Curt Schilling) -- Mary Thompson (wife of Milt Thompson) -- Rebecca West (wife of David West) Dr. Elliott Mancall, professor of Neurology, Hahnemann, and director, ALS Clinical Services Center Ellyn Phillips, president, Greater Philadelphia Chapter, ALS Association CONTACT: Phyllis M. Fisher, assistant vice president/public affairs, or Merrill S. Meadow, media relations manager, 215-762-8284, both of Hahnemann University Hospital. (9) ===== re: what can I do to help? ========== Date : Thu, 21 Jul 1994 09:45:14 -0700 (PDT) >From : Leigh Redding Subject: Help To : "Michelle K. Bong" Cc : Bob Broedel Michelle, When my husband Leigh was diagnosed with ALS in July of '93, it didn't take very long to find out who my real friends were. The majority of "my friends" ignored me or said things like "I have wanted to call but I didn't know what to say." It is really very simple, "hi, how are you," if you really care, the rest just comes naturally. I have one real friend, she calls and asks about me first. She knows that I am the same person, just circumstances have made major changes. She insists I get out at least once a week for lunch. She just drops by to give me a hug. She will bring dinner by once in awhile to give me a break from cooking. She also gives little gifts for no reason. She lets me know that I'm important in her life and she's always there for me, no matter what. Don't worry that what you say may seem inadequate, what's important is that you're there and she doesn't feel abandoned just because others make her feel that way. You may want to educate yourself on ALS so when she talks you have an idea of what she's talking about. Offer to go to support groups with her, accompany them to the Dr., etc. Bottom line is to be there, give her your love and support. You'll have a true friend for life, as I do. Michelle, I hope this helps you. Regards, Shawn Redding === end of als 114 ===