=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#103, 27 May 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 == == 250+ 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 .. ALS -- Special Request 2 .. MS query 3 .. ALS & famous people 4 .. nutrition & ALS 5 .. celebrity MDA appeal 6 .. RE: ALS -- Special Request 7 .. RE: ALS -- Special Request (more) (1) ===== ALS -- Special Request ========== ================================================================ Date : Thu, 26 May 94 13:02:46 -0700 (PDT) Subject: ALS -- Special Request >From : a11599@mindlink.bc.ca (R. Patton) ================================================================ I'm writing a documentary about Lou Gehrig's disease and believe you may be able to help me. I fortunately do not suffer from this, but would like to help people understand the angst of having a fully active mind in a deteriorating body. What I am looking for is the personal angle rather than the academic or medical. If there is any lead you can let me have I'd be delighted. Hoping to hear from you With thanks Richard Patton (2) ===== MS query ========== == part 1 == Date : Thu, 19 May 94 16:03:42 PDT >From : George Robert Siggins Subject: MS query Does anyone out there know of an on-line subscription group for discussion of multiple sclerosis, similar to this ALS group? I have a colleague who is interested in doing research in this area. Thanks in advance G.R. Siggins George Robert Siggins, Ph.D. Dept. of Neuropharmacology The Scripps Research Institute 10666 N. Torrey Pines Rd. La Jolla, CA 92037 Phone: 619-554-7067; FAX: 619-554-6412 == part 2 == Subject: Re: MS query Date : Fri, 20 May 94 15:31:14 EDT >From : Bill McGarry I just answered this same question in the Handicap Digest mailing list and messed the answer up totally so here I will give the RIGHT address this time There is a MS list called MSLIST-L and it is very active. To subscribe, send mail to: listserv@technion.technion.ac.il Leave the subject blank and for your message enter: sub mslist-l firstname lastname Bill McGarry (203) 926-6187 UUCP: {oliveb, uunet}!bunker!wtm INTERNET: wtm@bunker.afd.olivetti.com BITNET: l-hcap@ndsuvm1.bitnet Fidonet: The Handicap News BBS (1:141/420) 1-203-926-6168 (300 to 14400 baud, 24 hours) NVN: ABILITY Compuserve: 73170,1064 == part 3 == Date : Fri May 20, 1994 5:39 pm EST >From : George Robert Siggins ... geobob@scripps.edu Subject: re: MS query Thanks for the quick reply. My colleague Dr. Steven Henriksen is much obliged. It seems there is also a newsgroup (alt.support.mult-sclerosis; also apparently very good) on the same subject (if anyone asks again). Cheers: GeoBob (3) ===== ALS & famous people ========== MEMORANDUM The Amyotrophic Lateral Sclerosis Association; National Office; 21021 Ventura Boulevard, Suite 321; Woodland Hills, CA 91364. TEL 818-340-7500 FAX 818-340-2060. DATE: May 19, 1994 TO : Chapter Communications Person FROM: Richard Drasen SUBJ: Well Known Persons with ALS You can help in our national advertising strategies. Would you send us the names of well known persons who have or who had ALS? This can be anational figure whom you've heard about or more likely men and women in your chapter or support group area. By "well known" we are referring to company heads, civic leaders, sports figures -- anyone you think might fall into this broad category. If you have a question just call me. Please list their names, what they are famous for, age if you know it and whether or not they are still alive. I look forward to hearing from you soon. And Thanks! cc: Chapter Presidents Free Standing Support Group Leaders (4) ===== nutrition & ALS ========== ======================================================== Title : Maintaining adequate nutrition and hydration in : the dysphagic ALS patient Author : Welnetz K Source : CAN NURSE 1983 Mar; 79(3): 30-4 (21 ref) ========================================================= (5) ===== celebrity MDA appeal ========== OTC 05/26 2057 CELEBRITY FRIENDS STAR IN NEW TV APPEAL FOR MDA TUCSON, Ariz., May 26 /PRNewswire/ -- Five stars of film, recording and television are helping the Muscular Dystrophy Association by appearing in a TV appeal called "Friend of the Family." The 30-minute program, hosted by ABC News correspondent Denise Richardson and CBS daytime drama star Ed Fry, introduces three families who believe generous public support of MDA's rapidly progressing research into gene therapy for neuromuscular diseases can save their children's lives. Film star Ann-Margret tells viewers, "You are so important to these families. You're the one friend they can't do without." In addition to Ann-Margret, Richardson and Fry are joined by singers Maureen McGovern and Tony Orlando. The stars ask viewers to help families affected by neuromuscular diseases by phoning in pledges of $36, the cost of one minute of research in MDA's worldwide scientific search for cures and treatments. All five stars have long been involved with MDA's efforts to defeat 40 neuromuscular diseases. Ann-Margret is chairperson of MDA's Myasthenia Gravis Division; the disease affects her husband, Roger Smith. McGovern chairs the Association's Polymyositis/Dermatomysitis Division; the latter disease affects her niece, Carolyn Sweeney. Orlando, a frequent performer on MDA's Labor Day Telethon, has two young close relatives with spinal muscular atrophy (SMA). Fry's mother, Virginia, died from amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), and he chairs MDA's ALS Division. Fry and Richardson co-host the New York broadcast of MDA's Labor Day Telethon. The appeal will begin airing in early June on dozens of stations across the country, including affiliates of all major networks and several independents. "Friend of the Family" includes appearances by Kathy and Chris Fallon of Baltimore and their 7-year-old son, Lance, former MDA National Goodwill Ambassador, who has SMA. Shannon DeVido, 12, of Holland, Pa., who also has SMA, appears with her parents, Lauren and David. Mark and Kathy Wilburn of Manvel, Texas, whose sons, Travis, 9, and Austin, 7, have Duchenne muscular dystrophy, also tell their story. Fry, star of "As the World Turns," points out that MDA depends solely on private voluntary contributions. The association doesn't seek or accept government funding and never charges families for services. The TV appeal includes Richardson's interview with Jeffrey Chamberlain, assistant professor of human genetics at the University of Michigan Medical School, who has halted Duchenne dystrophy in mice through gene therapy. Since 1986, MDA scientists have identified more than 20 genes that, when defective, lead to neuromuscular diseases. These findings lay the groundwork for development of therapies to correct genetic flaws. MDA is a voluntary health agency working to defeat 40 neuromuscular diseases through programs of worldwide research, comprehensive patient and community services and far-reaching professional and public health education. The association's programs are funded almost entirely by individual private contributors. CONTACT: Jim Brown of the Muscular Dystrophy Association, 602-529-5317 (6) ===== RE: ALS -- Special Request ========== Date : Fri, 27 May 1994 09:45:57 -0400 (EDT) >From : NeuroScience Center at TMH Subject: Re: ALS -- SPECIAL REQUEST ------------------------------------------------------------- As for understanding the angst, there is a film called _Johnny Get your Gun_, footage of which can be seen in the Metallica video for the song _One_ about a soldier who loses sight, speach, hearing, arms and legs while at war and is kept alive in a hospital. While not directly ALS related, it may offer some perspective on issues to consider. I haven't seen the movie myself, and from what I understand, it's pretty hard to find. That's the nearest thing to help I can offer you. Good Luck. Chris The NeuroScience Center neuro@freenet.scri.fsu.edu at Tallahassee Memorial (904) 681-5037 (7) ===== RE: ALS -- Special Request (more) ========== Date : Fri, 27 May 94 08:53:57 CDT >From : optimg!philw@uunet.UU.NET (Phil Walsh) Subject: Re: ALS -- SPECIAL REQUEST ---------------------------------------------------------------- I never talked to my Mom directly about what kind of "angst" she felt as the disease progressed; she wasn't really much for discussing personal angst. But if you are prone at all to contemplating the difference between the body and the person that inhabits the body, knowing someone with ALS will keep you awake more than one night. ------------------------------------------------------------------ Nine months after being diagnosed, my mother's right arm had lost significant strength, and her left arm was being affected as well. It was the last day of our Christmas vacation at my parents house, and we were busy packing our bags, getting ready to leave. Mom wanted to hold my 7 month-old daughter, so I gingerly handed Katie to her. She rested Katie on her left arm and held her right arm across Katie's back. I went back in the guest room and continued packing. Sometime later, our packing done, I started looking for Katie and Mom. They weren't in the kitchen where I expected them to be, and they weren't in the living room either. I opened the door to my parents bedroom and saw Mom sitting on the bed looking out the window, her back to the door. Katie was gurgling happily in her lap as Mom sat there and sobbed. Almost a year and a half later, we spent Memorial Day weekend at my sister's home in Duluth. It was a long trip for my parents. It was very difficult for Mom to sit upright comfortably for any length of time, but she had wanted to go. She had just started using a wheelchair recently, but she was still trying to be as independent as possible. As they got ready to leave for home Monday morning, Dad got the wheelchair out of the van and brought it up to the house. He helped Mom down the stairs, and out the door. But as they got to the chair, she said "No," and refused to get in it. With Dad propping her up from behind, she struggled down the 50 ft walk to the van, where Dad helped her into her seat. She cried. That was the last time she ever visited my sister's house. We visited my parents house again the weekend of March 19-20. My mother could no longer move anything more than her eyes, an eyelid and some facial muscles. An elastic band held her head to a support on the wheelchair; it didn't seem like she could even work up a grunt anymore. But she heard every word you said and everything that went on around her. You could see her light up when one of the kids entered the room; she wouldn't hardly track me at all any longer, but if my year-old son crawled across the floor she struggled to keep her eyes on him the whole way, and when the kids started making some kind of mess that caused their mothers consternation, you could see her shake from laughter welling up somehwere within her. That Sunday was bright and mild, and so we wheeled her chair out into the back yard, and for 45 minutes the kids ran around and yelled and geese flew over honking and we all talked and Mom sat there and drank it in. We got out a wheelbarrow and the kids took turns riding while I pushed, making sure to wheel them over in front of Mom regularly. I'd get them somewhere close to where I thought she could see them and I'd say "See them?" and she'd lift an eyebrow in acknowledgment and almost grin. It was late in the afternoon and it started to cool off and Mom seemed to be getting tired and so we rounded up the kids and we wheeled her back inside. That Wednesday she died. My Dad had left for work, and a nurse's aid and one of my mother's caregivers were giving her a sponge bath. They were about to lay her down flat, which always made her uncomfortable. The nurse's aid said "Ok Mary Lou, I'm going to lay you down now; I know you don't like that, but I'll try to hurry, ok?" and my Mom gave the woman a little smile that had always been her way of saying "Don't worry about me, go ahead and do what you need to; it's ok, I won't hold it against you," and they started to lay her down and she stopped breathing and was gone. ----------------------------------------------------------------------- I have no idea if any of this is useful to you; I can tell you I think it's been useful for me to write it down. --philw ----------------------------------------------------------------- Phil Walsh philw@optimage.com Software Engineer 515-225-7000 OptImage ----------------------------------------------------------------- == end of als 103 ==