=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#115, 08 August 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 .. desperately seeking 2 .. ALS Book 3 .. ALS & flying 4 .. re: PC Technology 5 .. Thoughts on Flying with ALS 6 .. ALS/Virus ? 7 .. Iron Man Award (1) ===== desperately seeking ========== Date : Tue, 26 Jul 94 11:17:06 MDT >From : almes@drmail.dr.att.com I'm desperately seeking for informations on ALS, because a friend of mine has this disease in Italy. Please, help me! Thanks Alessandro Alessandro Messina Engineer in Electronics c/o Italtel AT&T System Verification Group AT&T 11900 North Pecos st. Denver, CO 80234 Phone: (303) 538-1635 Fax: (303) 538-4995 email: almes@drmail.dr.att.com ======================================================================= I'm posting this message trying to collect as many informations as I can about a disease that is killing the father of a friend of mine, in Italy. I've been told that researches are still at a starting point, for what concerns this disease, but I'm hoping to know a little bit more, and maybe to find someone who can help us by posting this article. I'm not a medical expert, therefore I'm posting this message in all the news groups I think it can be useful. Sorry if I'm not in the right news group. Instead, if you have any kind of informations, news, articles, or even if you know someone who can help me, please reply by e-mail at my address: almes@drmail.dr.att.com Thanks. Here is what I'm looking for: the disease is called AMYOTROPHIC LATERAL SCLEROSIS. It hits the neural system, and practically paralyzes who is sick for this disease, without stopping his brain. It has two main forms of development, one is faster and it is called Primary Lateral Sclerosis, and the other is slower and it is called Progressive Lateral Sclerosis. This man that I know, in Italy, seems to have the fastest one, unfortunately. His relatives are almost desperate, because they can not find anyone to help them, in Italy. Therefore I'm trying to contact as many people as I can. PLEASE, if you can help me, PLEASE...contact me! THANKS, and sorry for bothering who's not interested. Alessandro (2) ===== ALS Book ========== Date : 07 Aug 94 19:32:20 EDT >From : wayne phillips <70303.173@compuserve.com> Subject: als book Hi all; A friend gave us an inspirational book, "Charlie's Victory," by Charlie and Lucy Wedemeyer, published by Zondervan. I want to share it with you. Charlie has had ALS for 18+ years. He's a high school football coach living in the San Francisco bay area. You may have seen one of the movies about him made by PBS and CBS. A new movie is in the works now. Enjoy, Wayne Phillips 70303.173.compuserve.com (3) ===== re: ALS & flying ========== Date : 07 Aug 94 19:32:41 EDT >From : wayne phillips <70303.173@compuserve.com> Subject: als and flying Hi Ron and all: notes about flying with ALS Charlie Wedemeyer (see previous note) is on a respirator and feeding tube but often flies to Hawaii and even Europe. He recounts some flying experiences in his book. Let the airline know your situation well in advance. If you're on a respirator take your backup as carry on luggage (seems obvious). Almost two years ago my wife and I flew LAX-Miami-LAX on American (part of a cruise). AA was wonderfull. I was, and am, in a large power chair, no respirator or feeding tube. Some airlines won't carry lead-acid batteries or require you to package them specially. Mine are gel-cell, so we had no problems there, except having some employees tell us that they wouldn't take the batteries, only to have them retract when they checked with their supervisor about gel batteries. My wife disconnected the batteries and removed loose parts and the joystick and put them in a plastic trash bag. This she tied into the seat. It survived. The trickiest part was transferring in and out of the plane. We were only on large planes boarded via skyway; no ladders. My wife first put me in an airline supplied manual chair while she packed and checked my power chair. To board, to a very narrow "aisle wheelchair" which had an X type seatbelt; basically a dolly for people which felt pretty insecure. An employee wheeled me to my aisle seat. My wife then transferred me to the seat. This was hard due to cramped space. Ask for a bulkhead seat so you have more space. Exiting just reversed the process. Considering the waiting and boarding time, it's best to plan to use a catheter and legbag. good luck, Wayne Phillips 70303.173.compuserve.com (4) ===== re: PC technology ========== Date : 02 Aug 94 17:11:12 EDT >From : "71154,330" <74431.2305@compuserve.com> Subject: Response to Debra in ALS Digest#114 ===== re: PC technology ========== Debra, my name is Barry Goldberg and I have lived with ALS since 1990. My symptoms, too, started in the hands and when typing became a problem I looked into a variety of voice recognition systems. My requirements were that it be quick to learn, adaptable to the majority of programs out on the market, and that it continue to adapt to any changes in my voice which might occur due to speech involvement from either muscle weakness or the onset of bulbar symptoms. The end result was my company's purchase of DragonDictate, one of the most advanced programs available. When we purchased it, the price was ridiculous -- almost $10,000 but it did everything I needed and more. Today the same software -- much improved in terms of quality of recognition and other important considerations -- is less than $1,000! That includes the hardware and software. The software works with virtually all DOS programs and from what I understand Dragon now has a Windows version as well. This has a vocabulary of 30,000 words backed by a complete dictionary, has built-in commands for many word processing programs and even spreadsheets like Lotus 1-2-3. It continues to learn any changes in voice as it works and I'm sure it would work with a program like Quicken for checks and other banking needs. Information on DragonDictate can be obtained by calling Dragon Systems toll free number at 1-800-825-5897. I use this with fax, e-mail, modem applications like CompuServe and the INTERNET so I have experienced everything your father wants to accomplish. Good luck and let me know if there's anything I can add to help out. Barry Goldberg --- MDA -- Working to find the cure for neuromuscular disease (5) ===== Thoughts on Flying with ALS ========== Date : Tue, 02 Aug 94 14:24:55 EST >From : "Mike Doliton" Subject: Thoughts on Flying with ALS To All, I have been flying both commercial and private aircraft. I have no voice at present. Here are my ideas about flying: Do not fly if you have a cold. It is important to be able to relieve the pressure on the eardrum as the plane changes altitude. Swallowing is important too. If you can't swallow you could chew gum or Yahn. The commercial airliners are pressurized so that there isn't a danger for people who have trouble breathing. The airplanes maintain 1 atmosphere of air pressure. Take a voice synthesizer with you like the Radio Shack Talking Organizer EC-337. Take out trip insurance. If you get sick, which happened to me, you may have to change the departure time. Most airlines don't allow changing flights now a days especially if you get a cheep rate. If you are traveling to a foreign country, bring an insurance form with you. Also get a form from your doctor that outlines the procedures and the procedure numbers. Take this form to the bookkeeping department of the hospital and have them choose the right codes for the procedures. May countries aren't as sophisticated as the USA. And finally, get flu and pneumonia shots to prevent getting a cold. A cold can be very uncomfortable and even fatal depending how far the ALS has gone in the ALS patient. Be careful when you walk around. Some people with ALS are weak and fall easily. Regards, Michael Doliton (6) ===== ALS/Virus ? ========== Citation: British Medical Journal, June 11, 1994 v308 n6943 p1541(3) ---------------------------------------------------------------------------- Title : Sequences specific for enterovirus detected in spinal cord from patients with motor neurone disease. Authors : Woodall, C.J.; Riding, M.H.; Graham, D.I.; Clements, G.B. ---------------------------------------------------------------------------- Abstract: There appears to be an association between enterovirus and motor neuron disease. Motor neuron disease, also known as amyotrophic lateral sclerosis and Lou Gehrig's disease, is a fatal degenerative disease of the motor neurons for which there is no known cure. The enterovirus genus is associated with a number of diseases and includes polioviruses, which have been associated with motor neuron disease. Polymerase chain reaction tests of RNA sequences taken from 11 people who died from motor neuron disease revealed the existence of nucleic acid sequences specific for enterovirus in 8 of the patients. An enterovirus sequence was also located in one of two patients with putative familial motor disease. No such enterovirus sequences were found in similar tests conducted on a control group of patients with no motor neuron diseases. ============================================================================ (7) ===== Iron Man Award ========== DETROIT, Aug. 5 /PRNewswire/ -- Detroit Tiger Kirk Gibson has been selected as this year's recipient of the ALS/Detroit Tiger Iron Man Award. The Iron Man Award is given each year to the Detroit Tiger who best exemplifies the skill, perseverance and character of Lou Iron Horse Gehrig. Previous recipients include Darrel Evans, Mike Heath, Alan Trammell, Tony Phillips, Cecil Fielder and Mickey Tettleton. Gehrig died at the age of 37 from Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig's Disease. The legendary baseball player ended his record 2,130 consecutive game streak in Detroit from the early effects of the disease. This year's award selection committee included local sports reporters Jim Northrup (PASS), Eli Zaret (WJBK), Jay Berry (WXYZ), Ray Lane (WKBD), Fred McLeod (WDIV/PASS), Charlie Vincent (Detroit Free Press) and Paul Harris (Detroit News). The Award will be presented to Gibson at the Honeybaked Iron Man Award Luncheon, Wednesday, Sept. 21 at the international Banquet & Conference Center in Greektown. Former Detroit Tiger Jim Price will host the noon luncheon and Hall of Famer George Kell will be the keynote speaker. Proceeds from the luncheon will benefit the Harry J. Hoenselaar ALS Clinic at Henry Ford Hospital. Hoenselarr, the founder of Honeybaked Ham Company -- this year's award sponsor -- also died of ALS. Individual tickets for the luncheon are $50 and tables of 10 are $450. For more information, call Bonnie Oleszkowicz at 313-876-2004. CONTACT: Diana Leone of Henry Ford Health System, 313-876-2882 == end of als 115 ==