Date: Fri, 2 Dec 94 00:04:24 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#155 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#155, 02 December 1994) == == == == ------ 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 == == 410+ 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 .. A new life has begun 2 .. ALS patient samples 3 .. Re: feeding tubes 4 .. Re: burning skin 5 .. ALS discussion 6 .. Cephalon 7 .. sisters and brothers in the news (1) ===== A new life has begun. ========== Date : Wed, 30 Nov 1994 13:53:33 -0500 >From : SadieJanie@aol.com Subject: A new life has begun. Our world has just lost one of the most courageous, loving and kind women I have ever known. My mother in law, Wanda Jean Bainter, entered her new world of peace, without pain, on November 29th. She fought a good fight, never complained and stayed strong til the end. A wonderful mother of 6 boys and two girls, she struggled to stay with us until her youngest daughter's baby would arrive next July. That was not to be. We told her, before she died, that she will be a 'guardian grandma' and that it was ok to let go. About an hour later, she went into a fairly restful sleep and 12 hours later she took her last breath. Her husband of 53 years and each of her children and their spouses were able to be with her to tell her of their love for her and to talk about better days gone by. Laughter was combined with tears when remembering episodes of daily life of raising 8 children in a cape cod house with one bathroom. Even so, there was always room for more at her dinner table and everyone was welcome in their home. She was a terrific person and she will be greatly missed. But she is now free of the all the discomforts of ALS and I believe her prayers were answered that she be taken into her new life sooner than any of thought possible. I will continue to subscribe to the ALS digest. I would like to offer support to anyone I can. I hope you all have a wonderful Christmas season making good memories for the future and also for remembering good times in the past. May God Bless you all. Sincerely, Deanna Bainter (2) ===== ALS patient samples ========== Date : Thu, 1 Dec 94 14:48:22 EST >From : rosen@wadsworth.ph.albany.edu (Daniel Rosen) Subject: ALS patient samples Request for ALS patient samples Hi everyone. The purpose for this posting is to request patient samples from subscribers of the ALS Digest. I am in the process of setting up a new laboratory at the Wadsworth Center for Laboratories and Research, New York State Department of Health in Albany, New York. Previously I was the ALS project leader in the laboratory of Dr. Robert H. Brown, Jr. at Massachusetts General Hospital in Boston, Massachusetts. As some of you may be aware, Dr. Brown's laboratory is conducting research on the genetics of ALS with the goal of finding ALS-causing genes. Using families with a history of ALS, we were able to identify one gene, SOD-1, that caused some cases of familial ALS. However, SOD-1 mutations account for only about 25% of familial ALS cases, and apparently no cases of sporadic ALS. The fact that there are familial ALS cases without SOD-1 mutations implies that there is at least one other gene capable of causing familial, and maybe at least some cases of sporadic, ALS. I am preparing to conduct a new ALS gene study with the goal of finding those other ALS-causing genes. However, to do this, I will need samples from ALS patients. To participate in the ALS gene study I am organizing, all that is required is donation of a small sample of blood and information about family history. There will be no cost to anyone who participates in the study, and all information will be kept strictly confidential. You may withdraw from the study at any time without explanation. I am asking for samples from both familial and sporadic ALS patients, as once an ALS-causing gene is identified using the familial ALS cases, the sporadic cases will be analyzed to determine if the gene also causes this form of ALS. Anyone interested in participating in this study can contact me at rosen@wadsworth.ph.albany.edu or by calling (518) 486-2586 or by writing to: Daniel R. Rosen, Ph.D. Wadsworth Center L & R Empire State Plaza Albany, NY 12201-0509 Thank you for your consideration. Good health to all. Dan Rosen ________________________ ___________________________ ______________________________ Dan Rosen Wadsworth Center for Laboratories and Research (3) ===== Re: feeding tubes ========== Date : Thu, 01 Dec 94 12:51:18 EST >From : "Mike Doliton" To : METE , broedel@geomag.gly.fsu.edu Subject: Re: feeding tubes Dear Mete Pamir, I had a feeding tube put in about 7 weeks ago. No trouble except maintenance is required at the entry point. I have to swab down the entry point area with a cleaser 2 or 3 times a day. I have some leaking around the tube at the entry point. But they say they can put a larger tube in eventually with will not leak. This is all and I gained 10 pounds in 7 weeks and I am the desired weight that I wanted to be. I had some discomfort after the operation but this was not hard to deal with. It's worth it to have my weight back. My tube is called a BARD. There are many different types of feeding tubes but the BARD is supposed to stay in the best. Regards, Michael Doliton (4) ===== Re: burning skin ========== Date : Thu, 01 Dec 94 13:05:34 EST >From : "Mike Doliton" To : lwinlaw@cyberstore.ca (Lyall Winlaw), bro@huey.met.fsu.edu Subject: Re: burning skin Dear Lyall, I had this burning sensation in my skin on my legs. If it's any consolation it went away and just surfaces a little from time to time. It might be due to the synapse being invaded by free radicals which happens with ALS. Regards, Michael Doliton, Sony Medical Systems (5) ===== ALS discussion ========== Date : Mon, 28 Nov 1994 13:01:30 -0500 (EST) >From : Rae Frachel Subject: ALS discussion I read about the ALS discussion in The Medical List. I am a professor of nursing who plans to have senior baccalaureate nursing students monitor and possibly interact with discussion groups that have a supportive function for persons and families who have different types of health concerns. The students are all enrolled in a community health nursing class. The premise of the assignment is that persons who participate in discussion groups have something in common and therefore can be considered a "community" or aggregate group. What the students will be doing is trying to determine what the needs are of the participants based on the topics discussed. Subsequently, they will research locally how those needs might be met for persons with similar problems and concerns. Of course, the role of the nurse in addressing those needs will be emphasized. Few students in their undergraduate education come in contact with persons with ALS. Monitoring a discussion group or exchanging messages over the Internet could increase students' understanding of the illness and potentially make them better able to respond to clients in the future. Please let me know if you and the list participants would consider working with us in this way. Rae R. Frachel frachel@sjfc.edu St. John Fisher College, Rochester, NY ==== = Sounds wonderful to me. Hopefully you will be getting messages from = others and that you will be encouraged to join us. rgds,bro ==== (6) ===== Cephalon ========== PR NEWSWIRE via NewsNet Thursday December 01, 1994 CEPHALON APPOINTS MONROE KLEIN VICE PRESIDENT, WORLDWIDE REGULATORY AFFAIRS WEST CHESTER, Pa., Dec. 1 /PRNewswire/ -- Cephalon, Inc. (Nasdaq: CEPH) today announced the appointment of Monroe I. Klein, Ph.D., as vice president, worldwide regulatory affairs, a new position. He will be responsible for the company's regulatory submissions, compliance, strategies and policies. < parts deleted > Cephalon discovers, develops and markets products to treat neurological disorders. The company's principal focus is on neurological diseases such as amyotrophic lateral sclerosis (Lou Gehrig's disease), narcolepsy, peripheral neuropathies, Alzheimer's disease, head and spinal injury, and stroke. CONTACT: Mary Fisher of Cephalon, 610-344-0200 (7) ===== sisters and brothers in the news ========== PART (1) ------------ STAR TRIBUNE: NEWSPAPER OF THE TWIN CITIES Byline: Ron Schara; Staff Writer Column: Outdoors almanac 11/27/94 A limited edition Kent Hrbek frameable print, illustrating his outdoor interests and issued to commemorate the Twin's retirement from baseball, is available from Amyotrophic Lateral Sclerosis Association in Minneapolis. The 23x38 inch print sells for $149.50 (including postage and handling) and all proceeds go to the non-profit association to fight the disease. For information, call 672-0484. PART (2) ------------ LOS ANGELES DAILY NEWS TV, SPORTS AUCTION TO RAISE FUNDS POLICE ASSOCIATION EVENT WILL HELP OUT ILL OFFICERS Byline: James J. Rodriguez Daily News Staff Writer 11/28/94 With Christmas around the corner, the Burbank Police Officers Association might have that special entertainment or sports memorabilia gift for you. How about lunch with actress Marlee Matlin and actor Henry Winkler? Or a movie script for "The Godfather III," autographed by one of the stars, Andy Garcia? Then there's always a walk-on part to the sitcom "Picket Fences." Those are just some of the items to be auctioned off during a fund-raiser Dec. 8 sponsored by Matlin and the Burbank Police Officers Association. The event, open to the public, is being held to raise money for the association's catastrophic injury and illness fund, set up in 1992 to help officers who suffer debilitating illnesses. The fund was established after Burbank police Officer Danny Crawford was diagnosed with Lou Gehrig's disease and forced to retire. Crawford, who stays at home a lot these days, had been a patrol officer for eight years when he was diagnosed in 1989 with amyotrophic lateral sclerosis, a fatal nerve disorder. PART (3) ------------ THE BOSTON GLOBE Sgt. Detective Daniel Flynn Jr., homicide unit supervisor; at 48 Byline: Kevin Cullen, Globe Staff 11/29/94 Daniel B. Flynn Jr., a Boston police sergeant detective who continued to track down murderers even as he battled a debilitating, terminal illness, died yesterday at his home in Milton. He was 48. Sgt. Flynn succumbed to amyotrophic lateral sclerosis, known as Lou Gehrig's disease. He was diagnosed with the disease last year. In the macho milieu of homicide cops, Sgt. Flynn was decidedly different. While everyone swore, he did not. Eschewing the gritty fiction of Elmore Leonard and Tom Clancy, he counted philosophers among his muses, especially the Trappist monk Thomas Merton. In his desk drawer, where other detectives keep copies of books that spell out the technical intricacies of murder, he kept a Bible. Police Commissioner Paul Evans, a friend, said last night: "Danny broke the mold, in a lot of ways, of what we expect of cops. He wasn't gruff. He was very caring, very compassionate. I can honestly say I know of no more caring or committed person in this department. He tried to make a difference every day, and he did." PART (4) ------------ THE FORT WORTH STAR-TELEGRAM Straight-ahead look at mortality Patient with chronic disease chronicles struggle in a book Byline: Jan Jarvis 11/27/94 ARLINGTON - Helen Renwick says if she's lucky, she'll die in her sleep. "If I'm lucky, I simply won't wake up one morning," said the 55-year-old Arlington woman. "And if I'm not, I'll lose my ability to walk, talk, swallow, breathe." Renwick has lived with amyotrophic lateral sclerosis, better known as Lou Gehrig's disease, for seven years. Her doctors predicted that it would kill her within a year, but she continued working, first as a social-services provider and later as a writer. With the help of longtime friend Pat Simmons, Renwick is chronicling her journey - physically and spiritually - in a book that she hopes will be published after her death. Together, the women grope for meaning in the experience. In essays dictated to Simmons, Renwick looks at life with the clarity that imminent death can bring. "Having this disease is like having a front-row seat at your own demise," Renwick said as she settled into a sofa, head held erect by a brace."But I decided early on - I said to God - that I would try to do this right." "Right" for Renwick has meant focusing on what she is able to enjoy more than on what she has lost, and her manuscript puts a positive spin on her fate. Renwick's disease has followed a common pattern. She first noticed symptoms in 1987 when muscle weakness made it difficult for her to write a check. Next, her tongue was affected while working as executive director of Big Brothers/Big Sisters of Albuquerque. Doctors diagnosed the weakness as a virus of unknown origin until 1992, when a neurologist delivered the grim news. "I was told I would not be able to talk in eight months, and I'd be dead in a year," she said. "Well, in June 1993, when I was supposed to be dead, my son and I were on an airplane to Albuquerque." Although Renwick continued to travel, Simmons said she could see her friend's health and spirit wane. Renwick participated in an ALS research project in Chicago but after a near-fatal reaction to the drug, Renwick moved from the Midwest to Arlington in March to be with her family. Simmons, who was living in Albuquerque, soon joined her. The friends have become kindred spirits who endure daily heartaches and celebrate momentary triumphs. "Sometimes, Helen is my friend with ALS, but most of the time she's just my friend," Simmons said. "When I see something new, it brings on the tears, like when I noticed for the first time what a difficult time she had swallowing. That's when my heart hurts." Although chewing a morsel of food can take an hour or more, and walking requires intense concentration, Renwick ventures out to a restaurant or bookstore once a week. Her unshakable spirit and laughter so enchanted a waiter at Romano's Macaroni Grill recently that he paid for the meal, Simmons said. It's that spirit in the face of death that Simmons hopes to capture in the book. "She has remained in the world and interested in life and helping others," Simmons said. "She has not hidden herself." Although depression and suicide are common among ALS sufferers, Renwick has tried to find meaning in her suffering, Simmons said. This month, after much debate, Renwick agreed to a stomach tube that will give her the basic nutrition she needs to keep up her strength. But she doesn't let the tube prevent her from enjoying little pleasures: liqueur in her coffee, spinach crepes and chocolate mousse. PART (5) ------------ STAR TRIBUNE: NEWSPAPER OF THE TWIN CITIES Susan Margoles, disabled-rights activist, dies at 48 Byline: Anne O'Connor; Staff Writer 11/27/94 Susan Margoles never wanted to be known as a "courageous cripple." She couldn't talk, couldn't move, couldn't even breathe by herself, but that didn't stop her. Even after losing a nasty court battle to be cared for in her own home, she never gave up working for the disabled. "She still worked for everyone else," said her brother, Alan Margoles of St. Louis Park. "Most people would have looked at her and thought there was nothing there to give. She could only move one eyebrow. But she kept working for other people, to try to get them home health care even though she couldn't get it." Margoles, 48, died Saturday at Ramsey Nursing Home in Maplewood. She learned 17 years ago that she had amyotrophic lateral sclerosis, a progressive neuromuscular disorder also known as Lou Gehrig's disease. Doctors at the Mayo Clinic in Rochester, Minn., gave her three years to live. On Saturday, at her request, Margoles' family took her off life-support systems, her brother said. For years, Margoles could communicate only through a special computer or word board, which she operated by blinking her eye when someone pointed at the correct letter. In a newspaper interview, Margoles said that her quality of life would be improved greatly at home and that she should have some control over her life if she was going to be immobile. She started Minnesota Home-Care Advocacy, an organization to help other disabled people obtain home-health care. Margoles visited hospitals, researched public policy issues, wrote letters and sent information to people looking for ways to live at home. She traveled to Washington, D.C., and spoke before Congress about the need for better services for the disabled. She also spoke before the Minnesota Legislature, and her work was written about nationally. "She was a remarkable person," said Larry Leventhal, her friend and lawyer. "She survived more than a decade out of sheer willpower." "I think she's shown that there are a number of limitations in a health care system which prefers confining someone like Susan to institutions," Leventhal said. "She's illustrated to many that there are reasons to rethink our health care system." Services will be held at 2 p.m. today at the Temple of Aaron in St. Paul. Memorials to the ALS Society are suggested. === end of als 155 ===