Date: Sat, 3 Jun 95 03:05:04 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD195 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#195, 03 June 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 == == 720+ 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 .. Myotrophin 2 .. Mevacor and ALS 3 .. BDNF 4 .. environmental aspects of MND 5 .. Victoria 6 .. E-mail Directory 7 .. Tony Vitale (vitale@dectlk.enet.dec.com) (1) ===== Myotrophin ========== Be prepared for an announcement from Cephalon, Inc. on or soon after Monday, June 12. Cephalon is expected to release information -- at least preliminary results -- from its IGF-1 (Myotrophin) trial. (2) ===== Mevacor and ALS ========== >From : dendrite@dsp.com Subject: Mevacor and ALS Date : Thu, 25 May 95 22:09:44 EST In ALSD194, Ingrid M. Spielman asks about Mevacor possibly causing ALS. Mevacor is well-known to cause myopathy, which is dysfunction of the muscle cells. This probably has to do with alteration in fatty-acid metabolism by the muscle mitochondria. However, ALS is a disease of the motor nerve cell, NOT of the muscle cell, so it seems unlikely that Mevacor could cause ALS. On the other hand, it would be possible to have ALS and have the weakness exaggerated by a Mevacor-induced myopathy (a separate, but simultaneous, neuromuscular disorder). This could lead to a temporary improvement in strength when the Mevacor is stopped, but then continued gradual progression of weakness from the (unrelated) ALS. Eric Collins, MD (3) ===== BDNF ========== Date : Sat, 20 May 1995 22:22:00 -0400 >From : TooAged@aol.com Subject: BDNF I WOULD LIKE TO KNOW IF ANYONE HAS BEEN IN THE BDNF TRIALS AND WHAT SIDE EFFECTS IF ANY, HAVE BEEN EXPERIENCED. MY FRIEND WAS A PART OF THE SYNERGON TESTS AND HAD SUCH ILL EFFECTS THAT HE IS RELUCTANT TO TRY ANYTHING ELSE. ANYONE HAVE ANY ADVICE? THANKS PEGGY (4) ===== environmental aspects of MND ========== Date : Mon, 29 May 1995 12:57:04 -0400 >From : Vet4u@aol.com Subject: Re: Information I hope this won't sound psychotic, but I would like some feedback on the "environmental" aspect of MND. Is there any information out there on the effect of EMF's (electromagnetic fields) with relation to MND's. We have slept on a waterbed for 11 years and there is info re: use of electric blankets and the cancer dangers. I hope this doens't turn you off but instead stimulate conversation be it positive or negative. Thanx, MJD (5) ===== Victoria ========== >From : Don Lory Subject: contribution Date : Fri, 2 Jun 1995 21:02:35 -0700 (PDT) I'm an ALSer with a couple of thoughts I'd like to share - but this presents me with a dilemma. Via INTERNET anyone can be an expert and I am not. So, even though I have no authority or mandate to speak on behalf of our ALS Chapter, but I'd like to cheer for our home team! But, first, a sincere belated HAPPY BIRTHDAY to Ola Schjerve over in Norway. I visited Norway a number of times in my navy career. Once, in a hotel at Bardafos I helped celebrate a friend's birthday and learned to my horror the Norwegians have a liquid they keep in the freezer that does not freeze. Even today I well remember the truth and consequences of the local aqua vitae. I'm into my second year an ALSer - to the point where I was once (ahem) an excellent typist but now slouch in a wheel chair and slowly peck at the keyboard. But, enough of the pity party stuff. I have some understanding of the Canadian ALS organization at the national, provincial and local levels. While I understand there are similarities, I have no real idea how the MDA or other support groups work in the U.S. or elsewhere. In fact, let me quite properly confess I likely have a very narrow vision of the real world. Even so, I'd like to put in a plug for the Victoria Chapter of the ALS Society of Canada. After I learned I had ALS, my son and I (every parent today seems to have a son or daughter who is an expert in computers) started searching for something in the electronic world. We came across Bob Broedel's initiative from way down there in Tallahassee. It was - and is - a wonderful find. In fact, we circulate material among our ALS community members. With my colleagues here on Vancouver Island (off Canada's west coast), we will cheer when the subscriber level reaches the 1000 mark. Enough hearts and flowers. The reason for this contribution is to share a bit of insight into why I believe Victoria may be the best place in the world to be an ALS patient. Maybe even spark a thought for others. After following Bob Broedel's excellent presentations, I became increasingly concerned for many ALSers, family and caregivers who seem isolated, alone and in many cases abandoned in a very real world without any apparent sources of help or pool of knowledge and experience to assist. I know Canada has an excellent medical health plan - almost everything free (but paid for through very high taxes). Actual medical costs aside, however, there are far greater costs.....to family members, friends, caregivers and those like me. There is more needed by those primarily concerned than mere dollars can buy. At times ALSers, friends and relatives need someone to talk to. Someone to suggest what happens next. Whether this or that piece of equipment is best. Someone to explain. Sometimes just someone to share a tear with. When I was diagnosed ALS one of my first acts was to contact the Victoria Chapter of the ALS Society of Canada. I phoned President Phil Bissell. What else can I do? At least he would know what ALS is about. I suspected the ALS Society was simply one more of those medical research fund-raising "thingys" that ignores victims except to promise that the more money that goes into research the better the chance of someday getting a cure. Like, hurry and raise funds for research and maybe the medical lottery will help you, too. >From our first contact I knew there were solutions for problems I had yet to discover. I learned and appreciated that while Phil was the leader his team included people such as Pat Redfern who has been secretary/treasurer for a dozen years and Ken Gibbs who is a former navy pilot who now has ALS. An excellent and willing group to help newcomers along the path. Today, if there was some way of doing it, I would nominate this team as the world's best ALS volunteer workers. As a patient I learned when I needed advice, guidance, equipment or what-ever, all I had to do was ask Phil Bissell. He and others talked to me for hours to help me understand what ALS was doing to me. When I needed a power chair, it was delivered. Eventually I needed a hospital bed. It, too, was delivered. The same goes for grab poles, canes, wheel chairs and what-ever. There is nothing I need or want that our society has not provided. I know others, too, share the same support. It might sound like a socialist system running wild, but it isn't. It's simply three or four or five or six or so very willing volunteers who are determined to make the ALS world a better place. They seek and accept donations of equipment for which they constantly must find storage areas. They work to get the equipment back into use as quickly as possible. For example, I am now the "user" of the power wheelchair once used by Sue Rodrigeuz who died a year ago after she gained national fame in her bid to the Supreme Court of Canada for the right to a doctor-assisted suicide. Victoria is - and has been - Canada's West Coast navy home port. Sort of the San Diego North. Phil Bissell insists on sharing the credit with predecessors but for obvious reasons they enlisted the support of navy veteran's in this seaport city. The Naval Officers' Association of Vancouver Island and the Chief and Petty Officer's Association both deserve immense credit for their contribution. But, it boils down to the faithful few volunteers. Now, with my hunt-and-peck typing ability (generously aided by spell check) I suggest ALS patients and those in their cheering section in other areas of this old world can also get support. It may be a self-help initiative and take the determination and ability of someone like Phil Bissell to make it work, but it certainly is worth it. Because I, personally, am a beneficiary of what I believe is "the best" in the way of personal comfort and support, please excuse me if I understate the essential and very important need for research funds. Phil's group obviously needs funds for administration, equipment repairs, etc. but this is in no way in competition with the objectives of the other volunteer team which raises funds for research. In fact, I understand the "team spirit" approach used here results in more money being raised than anywhere else in Canada. And to brag just a bit, we are now ready for the ALS Flower Day on June 3 and I would bet that our area on Vancouver Island will raise more money than any other area in Canada. So, if I must endure ALS, I am absolutely convinced the only place in the world I would want to be is right here in Victoria, also within reach of the ALS clinic at the University Hospital in Vancouver. I have detected nothing over the months that comes even close to the free and willing volunteer aid and support that I just assumed everyone else also received. I am indeed blessed. At the same time, however, it seems to me with a bit of organization and willing volunteers others could also greatly benefit. I may not have explained the "big picture" very well but if I have sparked any interest or curiosity I'll volunteer Phil Bissell's address - along with that of our very capable secretary for direct contact: Phil Bissell, President, Victoria Chapter, ALS Society, 1196 Oliver St., Victoria, B.C., V8S 4W9. Telephone and Fax: (604) 598-1285. Secretary Ms. Pat Redfern, 4714 Crofton Pl., Victoria, B.C., V8Y 3C5. Telephone (604) 658-2106 or fax (604) 658-2147. (6) ===== E-mail Directory ========== Date : Thu, 11 May 95 0:57:56 -0400 Sender : Subject: E-mail Directory >From : MOliva@aol.com} Hello. I would like to start an E-mail Directory of Neurologists. I plan to maintain, update, and distribute it electronically. Currently, I know of two other directories. One, is the AAN member directory, which is published yearly. The other is on the AAN home page on the World Wide Web. Unfortunately, the AAN directory is already out of date. For example, I know of two colleagues who have e-mail addresses which do not appear in the 1995 AAN directory. I'm sure there are others. Also, not everybody with e-mail has access to the World Wide Web. Therefore, if you would like to be listed in the directory, please email me. I plan to keep it simple and store only name, city, and e-mail address. I figure any other information (address, phone number) can be obtained directly from the member via e-mail. I will electronically distribute copies of the directory to all those listed (including future updates). Armando Oliva, MD Washington DC moliva@aol.com (7) ===== Tony Vitale (vitale@dectlk.enet.dec.com) ========== BYLINE: Chris Sinacola; Telegram & Gazette Staff DATE : 05/28/95 SOURCE: Sunday Telegram Worcester, MA NORTHBORO - When he's had his daily fill of algorithms, Anthony J. Vitale likes to watch a little comedy. In fact, watching as much comedy as possible has become somewhat a matter of life or death for the 50-year-old linguist and engineer, for reasons that began two years ago. On a summer morning in 1993, Vitale was on his usual four-mile run when he began having trouble with his left leg. There was no pain, but he kept scuffing the top of his sneaker. Puzzled, Vitale went to his doctor where, after numerous tests, he was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease. What made the diagnosis particularly ironic was that Vitale has spent more than two decades working at the forefront of speech synthesis, designing software to enable the visually or speech-impaired to better communicate. In the last two years, he has lost his ability to walk, but his hands, mind and speech remain unimpaired. "You've got two choices, live or die," Vitale said during an interview at his home on St. James Drive. "Basically, I choose to survive as long as I can. If I were pessimistic, I would be dead right now." Vitale said he has no regrets about his life or career, although he is hardly ready to quit either. As his name suggests, he has approached his time on earth with gusto. In the late 1960s, he was trekking through East Africa with the Peace Corps, spending time in Kenya and Somalia. He not only learned Swahili before setting foot in Africa, but is the author of two textbooks about the language. Vitale graduated from Boston University with a bachelor's degree in English, and holds master's and doctorate degrees in general linguistics from Cornell. He learned French in the former Belgian Congo (now Zaire), German in Germany, and Polish in Poland. Having grown up in Boston's North End, he had little trouble finishing off textbook Italian. He has held two Fulbright-Hays teaching positions, in Dar es Salaam, Tanzania, and Lodz, Poland. He has also served with the United States Information Agency in Poland and in Czechoslovakia as an academic specialist. In 1981, when Soviet tanks poured into Warsaw, Vitale put his wife, Jeanine, on one of the last flights out of the city. It was three weeks before he knew whether she had made it safely back to the United States. NO FEAR "With what I saw then," Vitale said, "I can't be afraid of death now. I saw some pretty nasty things the police did to the people." Living under communism and having a gifted tongue made for interesting times. Vitale recalled the Kafkaesque experience of having a government censor actually break into one of his personal phone conversations to ask if he would please speak in Polish. Another time, he held a phone conversation in Swahili, baffling government authorities who had never heard anyone in Poland speak it. Vitale is currently senior consultant in linguistics and speech technology with Digital Equipment Corp.'s Assistive Technology Group, based in Marlboro. He rejected the opportunity to take long-term disability, preferring to remain active and working. He goes in to work two days a week, and spends the other three immersed in his home office, where a jumble of computers, printers and wires connect him to the world. Messages pour in by electronic mail - in addition to work messages, there are personal greetings, linguistic tidbits from around the globe, and news from the ALS research front. SYNTHESIZER But perhaps the most meaningful work Vitale has done is in the creation and improvement of DECtalk, the world's leading text-to-speech synthesizer. Vitale connects the DECtalk unit, which is about the size of a portable radio, to his notebook computer, types a message, and presses a command. The voice of "Paul" reads back the message. Paul hasn't shed his electronic accent, but the message is fully intelligible. Work is now under way to teach DECtalk German, Spanish and French. Much of Vitale's work consists of designing algorithms, or computational procedures that enable the software to recognize chains of letters as belonging to a particular language. From there, other commands allow the speech synthesizer to pronounce the text with a high degree of accuracy. For more than a year, he worked on a single algorithm to allow DECtalk to pronounce proper names correctly. DECtalk's voices, eight in all, are based upon real people, male and female, young and old. The British physicist Stephen A. Hawking, for example, who has ALS, uses Paul's voice in all his communications. It is the voice featured in the movie based on Hawking's life and work, "A Brief History of Time." TIME IS LIMITED Vitale said he knows that his own time is limited, but points out that the disease could have begun with his hands or his brain. Looking around his office, it quickly becomes clear that Vitale means what he says about the importance of language - the Oxford English Dictionary is near to hand, and the dozens of other books include a history of Poland, an Arabic-English dictionary, and a hefty tome entitled "A Generative Theory of the Syllable." Vitale's third book, which is to be a collection of figurative uses for the names of ethnic groups, countries, or languages, is about 80 percent complete. Scrolling through the manuscript, Vitale picks out examples as simple as Danish (a type of pastry) to the Polish "Chinski mur," meaning "Chinese wall" - any difficult or insurmountable problem. Vitale believes a breakthrough in ALS research, which has proven to be as difficult a medical challenge as any, may come within a decade. While that is likely to be too late to help him, he remains undeterred. In a convention speech given last year as president of the American Voice Input/Output Society, Vitale told of a dinner with Hawking and his assistant at which the discussion turned to winning the lottery. Vitale had quickly decided he'd spend the rest of his life drinking rum on a beautiful Caribbean island. "Stephen interrupted and said, "No you wouldn't. You'd keep working on speech just as I've kept working on theoretical physics - because we owe it to mankind and it's a much more useful endeavor than the one you just spoke about.' "On the way home," Vitale told the convention gathering, "I said to my wife, I think I'd probably still be drinking rum on some Caribbean island. But I was wrong. Hawking was right. Now that I have only perhaps a few more years to live, I've been working harder than ever before." === end of als 195 ===