Date: Thu, 9 Feb 95 00:20:23 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#172 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#172, 09 February 1995) == == == == ------ 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 == == 480+ 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 .. excess salivations 2 .. Barrie Houston Ford 3 .. ALS Onset 4 .. My Friend Robert 5 .. movie about Lou Gehrig 6 .. Infant has ALS/Lou Gehrig's, mother has questions 7 .. Speaker Phone 8 .. ASSISTANCE TECHNOLOGY AND ALS 9 .. John's Passing 10 . Gene Finding Workshop (1) ===== excess salivations ========== Date : Mon, 06 Feb 95 11:51:01 -0500 >From : "L. Staton Noel" Subject: post My mother was prescribed scopolamine patches by her physician to control her excess salivations. However, at this time we are not able to get any and have been told that it is a problem with the manufacturer. Does anybody have any suggestions of where we could get some or suggest some alternative? Staton (2) ===== Barrie Houston Ford ========== Date : Mon, 6 Feb 1995 10:29:49 -0500 (EST) >From : Bill Hyde Subject: Barrie Houston Ford Bob and all, I have been following the ALS digest for some months now on behalf of my good friend Ed Houston, whose daughter Barrie Houston Ford, had ALS. Barrie passed on last Friday night, and so I bid this group farewell. Ed wanted me to let you all know how he appreciated the information that was distributed via this group. I also want to thank you all for teaching me so much, as I have followed your trials and tribulations along with Ed. Godspeed Barrie. Bill Hyde Dania, FL bhyde@aksi.net (3) ===== ALS Onset ========== Date: Wed, 8 Feb 1995 20:31:24 -0500 >From: Teach21@aol.com Subject: ALS Onset My father was diagnosed with ALS in August of '93. His onset/diagnosis coincided with his undergoing major surgery, unrelated to ALS, approximately 6 months before. There may have been symptoms present prior to surgery, but after surgery, the ALS progressed at a very rapid pace. I was wondering if any one else had noticed either the emergence of symptoms or rapid progression of ALS after major surgery. I am interested in any and all responses. I can be reached at Teach21@aol.com Thanks in advance (4) ===== My Friend Robert ========== Date : Sat, 28 Jan 1995 14:03:47 -0500 >From : DanB5974@aol.com Subject: ALS Digest; My Friend Robert Well, here's another note about My Friend Robert. The note in ALS166 from David Wray (Optimism 101) was very good. It reminds me in ways of Robert's predicatement. He's had ALS for about two years. He's had no limb control (I mean, zero), been on assisted breathing for 9 months. He's loosing his voice and part time ability to swallow, which puts him into a every-few-minutes care bracket, when he coughs or has saliva. He has not been progressing quickly, perhaps helped by valium. In August I learned about Robert Ray, and started visiting him. Either the wife or I visit him daily now. He's divorced; his kids are in custody of x-wife and stepfather in Bellingham, where most of his friends are. He's in the THC Hospital in North Seattle now. Visitors from Bellingham are scarce due to travel time. Kids visit infrequently; x-wife says what's the use. Obviously no family to provide home care. And he definitely has not been the most patient with care given. This has hurt him. He's been on state aid, and they don't like to put out the red carpet. There are very few places that will accept him, and those that do do not have red carpets. Each one that becomes a possibility comes and reviews things, and then decides that the cost of care is too great for what the state would give them. One place after another has gone away. He was in a rat hole in Seattle, and everyone was trying to get him out of there. Finally he got a virus that got him into a hospital. From there, the THC which is a lower care transitional hospital. Been strictly a temporary situation while a non-hospital was found. No other place has stayed in the picture. And Robert does have all this optimism. Follows all the scientific stuff closely. Would like someone to experiment with him. Here's where the desperate mentality enters. He was in an experimental program somewhere, and of course they used controls - placebo. He didn't follow the protocol; didn't care so much about scientific test results as he was interested in getting well. He took double and triple doses, and got booted off the program. Keeps hoping for the big bang cure. He'd despirately like to get closer to his kids. Some kook up in Bellingham, refered to as doctor, keeps giving him false boosts. Enough to convince Robert to demand a car, and Robert would drive to Bellingham. That's so far from reality it's insane. I won't go into other destructive things this kook put Robert up to; all nearly as rediculous. As far as I know, said Kook hasn't been down to Seattle to visit Robert and refresh himself on reality. ON the phone, he apparently tells Robert he can do anything if he puts his mind to it. The latest, tho, is that there was a group home in the area that was all set to take him. However, the state would have to buy all equipment. Someone from the state was supposed to visit him and the home, and decide. Well, someone decided, without any visit whatsoever and without having reviewed history on the case, that Robert would not go there and would go somewhere else. Back to ground zero; nothing; exploring totally anew with no hope. I intend to explore this politically. Without going into it, I think religious bias was involved. (5) ===== movie about Lou Gehrig ========== Date : Wed, 08 Feb 1995 14:46:23 +0100 >From : Floor Weijnen Subject: movie I wonder if anyone on the list could give me some information on the movie about the life of Lou Gehrig (e.g. the exact title or the name of the director). This movie has been mentioned on this list. I have tried find some information in Holland, where I live, but no one has ever heard of it. With kind regards, Florence Weijnen ======================================================================= Florence Weijnen Dept. Oral Physiology Faculty of Medicine Telephone +31-30-533096/533540 Utrecht University Fax +31-30-535537 P.O. Box 80.037 e-mail F.G.Weijnen@med.ruu.nl 3508 TA Utrecht The Netherlands ======================================================================= ===== = Dear Florence, There may be other titles, but here are the two that I = know about. = THE PRIDE OF THE YANKEES. Excellent portrait of baseball great Lou = Gehrig. Beginning as he joined the Yankees in 1923, the film follows = this great American through to his moving farewell speech as his career = was tragically cut short by the disease that bears his name. 1942, 128 = minutes, Gary Cooper, Teresa Wright, Babe Ruth, Walter Brennan, Dan = Duryea. Directed by Sam Wood. = LOVE AFFAIR: THE ELEANOR & LOU GEHRIG STORY. The true story, told from = Mrs. Gehrig's point of view, of the love affair between baseball great = Lou Gehrig and his wife Eleanor from his glory days as a New York Yankee, = to his battle with an incurable disease. A television drama. 1977, 96 = minutes, Blythe Danner, Edward Herrman, Patricia Neal, Ramon Bieri, = Lainie Kazan. Directed by Fielder Cook. = rgds,bro ===== (6) ===== Infant has ALS/Lou Gehrig's, mother has questions ========== Newsgroups: sci.med >From : tmc@cb1focus.cb.att.com (45354-Tom Cliff) Subject : Infant has ALS/Lou Gehrig's, mother has questions Date : Fri, 3 Feb 1995 18:06:05 GMT To whomever may be of help, I am posting this for my cousin, who has a friend whose son has infantile Lou Gehrig's disease (ALS). He was diagnosed early and was not expected to live very long, but has already survived into his first year. The mother speculates that this may be in part due to doses of vitamins he is receiving based on the advice of a local school principal who also has ALS. The mother has the following questions that she has asked to be posed to the Internet community. Please respond directly to me if you can provide any information: Thomas.M.Cliff@att.com. 1) Are any studies being done on muscular diseases (e.g. ALS) using vitamins/nutrients/amino acids as treatment? 2) Has anything been found regarding the restoration of deteriorated anterior horn cells, nerves, and the central nervous system? 3) Has anything been found to help strengthen swallowing muscles (the baby has difficulty swallowing? 4) Has any research been undertaken in other countries on genetic muscular diseases, and, if so, how might these researchers be contacted? Please forgive me if any of these questions don't make sense. I've transcribed them the best that I could from a brief phone conversation. Also, if there are more appropriate forums for this posting, please let me know. Thanks in advance, Tom Cliff AT&T Bell Labs Columbus, OH Thomas.M.Cliff@att.com (7) ===== Speaker Phone ========== Date : Mon, 6 Feb 1995 08:54:40 -0700 >From : gnicholas@lanl.gov (Grant Nicholas) Subject: Speaker Phone I'm responding to your request for information about speaker phones. We listened to and priced several varieties (Radio Shack, etc) before we found a model called the Freedom Phone made by Southwestern Bell. It was retailed by "BEST BUY" a electronic merchandise chain, and sold for less than $45.00. We are really happy with the phone, the voice quality was best of all those we listened and talked over, and the price was less, by half, than any other model we looked at. If I may be of further help, whistle. Regards, Grant ========================================================================== ===== Grant L. Nicholas Voice: 505/665-3212===== ===== Los Alamos National Laboratory Fax: 505/665-4657===== ===== NIS-4 Space Science Engineering gnicholas@lanl.gov===== ===== CIS:74000,1616 ===== ===== AOL:GrantN6077 ===== ========================================================================== P.S. In my haste to answer you I neglected to include the model number of the phone: FM 880 is model #. The device has 32 speed key dialing and has an LCD display as well. (8) ===== ASSISTANCE TECHNOLOGY AND ALS ========== PART (A) ----------- Newsgroups: alt.education.disabled >From : Renard_Fritz@bbs.edc.org Date : Sun, 05 Feb 1995 05:52:59 EST Subject : ASSISTIVE TECHNOLOGY AND ALS Can anyone give me any ideas on enabling a lad with severe ALS to use a Mac. He is very intelligent yet can only move his foot. PART (B) ----------- >From : Christine Wade Newsgroups: alt.education.disabled Subject : Re: ASSISTIVE TECHNOLOGY AND ALS Date : Sun, 5 Feb 1995 13:13:03 -0500 On Sun, 5 Feb 1995 Renard_Fritz@bbs.edc.org wrote: > Can anyone give me any ideas on enabling a lad with severe ALS to use > a Mac. He is very intelligent yet can only move his foot. I recently sent a patient with advanced muscular dystrophy to Helen Hayes Hospital in New York for evaluation for a new wheelchair. They were fantastic! They came up with a system that included devices to allow him to use his computer - they do all kinds of software and hardware modifications up there. Call Jean Minkel, the physical therapist in charge up there at 914-947- 3000, ext. 3102. The other therapist who knows about equipment available is named Karin. Best of luck, Christine Wade (9) ===== John's Passing ========== Date : Mon, 30 Jan 1995 23:36:38 -0800 >From : tomsweet@ix.netcom.com (Thomas R. Sweet, Sr.) Subject: John's Passing I've been a reader of this listing for several months after learning that my brother-in-law suffered from ALS. I passed the messages along to John on a regular basis, and this helped him to keep in touch with the various efforts underway to fight this terrible affliction. I thank all those who contributed on John's behalf. Sadly, John died Sunday afternoon. He was diagnosed just two years ago with Bulbar onset. John was only 42, and he is survived by his wife and two young children. His death, although expected at some point, was a shock. We all thought John would live for some years longer, especially since he was so young. John was more than just my brother-in-law, we were also close friends. He was always very active throughout his life. John loved baseball and was quite a good athlete. I don't believe he suffered from any serious illness until the onset of ALS. John participated in a sanctioned research program for some period of time, although at this time I don't have details about this. He also used some unconventional treatments that I don't believe were of any use. He tried bee sting therapy, had his mercury fillings removed, some form of live cell injection being tried in Great Britian, and others. These treatments created greater financial strains on his family. When the immediate pain begins to lessen, I will learn more about the various treatments he tried so I can share this information with the group. I'm sure he would want to help anyone who might benefit from this knowledge. Like many people who suffer a major medical catastrophy like ALS, John's family was practically wiped-out financially. I know the MDA association was helpful in getting a wheel chair and other items that helped him. I gained a renewed appreciation for MDA. I believe, as I know John did, that sharing information through the Internet can only help patients and families better understand this terrible illness. John certainly never gave up hope. The day will come when ALS will be cured. Tom (10) ===== Gene Finding Workshop ========== Date : Wed, 8 Feb 1995 11:34:36 +0100 Sender : Human Molecular Genetics >From : Arthur Bergen Subject: David Searls / FIRST CALL: Gene Finding Workshop ---------------------------------------------------------------------- PRELIMINARY CALL Workshop on Gene-Finding and Gene Structure Prediction October 13-14, 1995 University of Pennsylvania Philadelphia, PA SCOPE The Workshop on Gene-Finding and Gene Structure Prediction will be concerned with the increasingly important activity in computational biology of discovering protein-encoding genes in otherwise uncharacterized primary sequence data. This has traditionally been done in genomic sequence by discriminating likely coding regions based on a variety of statistical analyses and by detection of landmark sequences such as splice junctions. Recent approaches have involved combination of such evidence using rule-based and/or connectionist architectures, and have dealt in a variety of ways with the combinatorial problem of exon assembly (dynamic programming, clustering, etc.) The recent profusion of expressed-sequence data and related techniques has also raised new issues and opportunities. In this workshop we will explore topics such as compositional measures of exonic tendency (including approaches founded in statistics, information theory, and signal processing), the effects of genome heterogeneity, the role of models of biological signals and processes, dealing with incomplete and error-prone sequence data, algorithmic and probabilistic techniques, and similarity-based gene prediction. Problems of interest include detecting coding sequences and assembling gene models from large-scale genomic sequence, collections of expressed sequence fragments, and sets of putative exons from a region. Practical issues of interest include dataset and performance metric standardization, annotation of genome databases, and software interoperability. < parts deleted > FURTHER INFORMATION To express interest in the Workshop and to receive further mailings directly, send e-mail to dsearls@cbil.humgen.upenn.edu, or contact David Searls Department of Genetics, CRB475 University of Pennsylvania School of Medicine 422 Curie Boulevard Philadelphia, PA 19104-6145 Voice: (215)573-3107 FAX: (215)573-3111 === end of als 172 ===