=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#112, 18 July 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 == == 280+ 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 .. Editorial Comment. -- Building the Net -- 2 .. ALS Profile 3 .. PYCNOGENOL 4 .. ALS Profile - 2 5 .. how to gain weight? 6 .. ALS fund raising 7 .. managing ALS (book) 8 .. PEG (a partial search) 9 .. juvenile ALS 10 . ALS journal articles (1) ===== Editorial Comment. -- Building the Net -- ========== We all owe a *BIG* thanks to Barry Goldberg (71154.330@compuserve.com) for helping establish important international ALS/MND contacts! Iceland, Spain, Norway, and others are now on-line with us, and more are to follow soon. Also *MANY* thanks to the Editors of ISN News for mentioning the ALS Interest Group and for telling their readers how to join us. Important neuroscience researchers are joining our network as a result of the ISN News notice. rgds,bro (Bob Broedel) (2) ===== ALS Profile ========== Date: 13 Jul 94 18:59:12 EDT >From: Mike Breen <71712.3344@compuserve.com> Subject: ALS Profile My name is Mike Breen, I'm 46 years old. I have a wife of 20 years, Diane, and 2 Irish daughters, Kelly [14] and Kerry [11]. My first symptom of ALS was a weak thumb in Feb. '93. In Jul. '93, I was confirmed as having ALS. Now a year later I can no longer walk, raise my arms or hold anything in my hands. I've been off of CNTF for over a month, waiting for Synergen to get their act together, and get me the real drug. In the meantime I'm taking 300mg of NEURONTIN a day. While on this drug all my swallowing problems have disappeared, I've also gained some strength back in my hands. My breathing capacity has dropped to 55%. For the last 2 weeks I've been using Tom Woods [MTDY51A@prodigy.com] Respiratory System. Tom has worked with many ALS patients, and has a good system for prolonging the life through therapy. His oxygen machine is electric and dry, I use it when I feel short of breath. The pressure breathing therapy, I use twice a day for 10 min., it pumps 5 pounds of air into lungs, and feels like a good workout. The masked ventilator I use every other night, Tom dialed it in, and it senses as you take a breath then gives you a volume of air for effortless breathing, puts you right to sleep. My thanks to: GOD-for my family, without their support I wouldn't be alive today. TWA-for 27 years, and never laid off. Kaiser Permanente-for all the equipment and drugs, and doctors who take good care of me. Medical College of Georgia-Dr. Michael Rivner and staff for their CNTF program. Friends of Disabled-in Stone Mtn. GA, 404-491-9014, They supply bathroom eqpt., walkers, wheelchairs, hospital beds at no charge to disabled adults. and Tom Woods. A BIG THUMBS DOWN TO: The MDA-myself and many other ALS victims will never go back to their clinic at Emory University in Atlanta, not much in the way of support given. Mike Breen Ramp Crew Chief Trans World Airlines Atlanta Compuserve 71727,3344 Internet:71727.3344@compuserve.com (3) ===== PYCNOGENOL ========== >From : Donna Lee Burke Subject: PYCNOGENOL Date : Wed, 13 Jul 94 11:07:44 PDT Has anyone heard of PYCNOGENOL? My brother-in-law was told that a ALS patient who was in a wheel chair took 20mg of PYCNOGENOL per 20# for 1 month then cut it in 1/2 and now is walking with a cane (no more wheelchair). Is it a pill, powder, etc.? If anyone has information on this drug, please reply immediately to dlburke@mayfield.hp.com Thank You Donna-Lee Burke (4) ===== ALS Profile (2) ========== >From : SadieJanie@aol.com X-Mailer: America Online Mailer Sender : "SadieJanie" Date : Fri, 15 Jul 94 10:15:28 EDT My Mother in law was diagnosed with bulbar ALS almost exactly one year ago. She is still able to walk, but with labored breathing and extreme fatigue. She uses a wheelchair when necessary. About two months ago she had a feeding tub placed in her stomach. It seemed to give her some extra strength for awhile, but the disease seems to be steadily progressing. My mother and father in law raised 8 healthy children. They and their families fully support my in laws. We attend the ALS group meetings in Madison, WI once a month. We all plan to attend the ALS picnic in Madison which I believe is August 21st. I hope to see some of the online subscribers there! (5) ===== how to gain weight? ========== >From : ianp@carina.unm.edu (ian FRIENDS.IN.TIME phillips) Subject: Re: ALSD111 ALS-ON-LINE Date : Fri, 15 Jul 1994 20:45:48 -0600 (MDT) Could you ask the network if anyone knows any keys to gaining weight? I have tried different diets and lots of Ensure but I still lose weight. Thanks Ian Phillips (6) ===== ALS fund raising ========== PHILLIES COACH LARRY BOWA MAKES A `SHORT-STOP' AT FASHION BUG TO BENEFIT ALS BENSALEM, Pa., July 15 /PRNewswire/ -- Legendary former Phillies shortstop Larry Bowa will meet and greet fans at Fashion Bug in Whitman Plaza, located at Third Street and Oregon Avenue, on Saturday, July 23, between 11 a.m. and 1 p.m. Bowa will pose for pictures and sign autographs with the general public in Fashion Bug's new "Stefano Men's Shop" located in the rear of the Whitman Plaza store. One dollar will be charged for every picture taken or autograph signed, with all proceeds going to find a cure for Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's Disease. One of the best shortstops ever to grace a baseball diamond, Bowa is a 20-year veteran of the sport, participating in five All-Star games, five NL Championship Series and one World Series. Currently a key member of the Phillies coaching staff, he serves as third base coach and continues to be an invaluable asset to the Philadelphia Phillies organization. Bowa, a former Sacramento native, now resides in Bryn Mawr, Pennsylvania, with his wife Sheena and daughter Tori. Fashion Bug in the Whitman Plaza is one of nearly 1,400 Fashion Bug stores in 45 states, featuring the latest sportswear, career wear, lingerie and accessories in Junior, Misses and Plus sizes. Most stores, like Whitman Plaza, also feature casual footwear, as well as Girls' and Men's fashions, all at affordable prices. Charming Shoppes, Inc. operates this chain of specialty stores through its subsidiary corporations. CONTACT: Michelle Durham of Charming Shoppes, 215-633-4795 (7) ===== managing ALS (book) ========== A newly published book ... Amyotrophic Lateral Sclerosis: A Comprehensive Guide to Management. ------------------------------------------------------------------- Edited by Hiroshi Mitsumoto, MD and Forbes H. Norris, MD 1994, Demos Publications, 342 pages, $39.95, paperback. Available from: Demos Publications; 386 Park Avenue South, Suite 201; New York, NY 10016. TEL 212-683-0072, FAX 212-683-0118. Here is the Table of Contents: 1 ... Classification and Clinical Features of Amyotrophic Lateral Sclerosis. Hiroshi Mitsumoto 2 ... Amyotrophic Lateral Sclerosis: The Diagnostic Process. Walter G. Bradley 3 ... Care of the Amyotrophic Lateral Sclerosis Patient. Forbes H. Norris 4 ... Therapeutic Trials in Amyotrophic Lateral Sclerosis. Sany T. Khabbaz and Raymond P. Roos 5 ... Amyotrophic Lateral Sclerosis: Unorthodox Treatments. Mark R. Glasberg 6 ... Dysphagia and Dysarthria: The Role of the Speech-Language Pathologist. James M. Mancinelli 7 ... Nutritional Maintenance in Amyotrophic Lateral Sclerosis. Eileen M. Carr-Davis 8 ... Physical Therapy Interventions in the Management of Amyotrophic Lateral Sclerosis. Catherine M. Howell 9 ... Environmental Adaptations Patricia Casey 10 .. Long-Term In-Hospital Ventilatory Care for Patients with Amyotrophic Lateral Sclerosis. Hideaki Hayashi 11 .. Respiratory Management and Home Mechanical Ventilation in Amyotrophic Lateral Sclerosis. Edward Anthony Oppenheimer 12 .. Life Support: Realities and Dilemmas. Mark B. Bromberg 13 .. ALS Nursing Care Management: State of the Art. Barbara T. Beal Libby 14 .. Successful Home Care. Mary Beth Parks 15 .. Psychosocial-Spiritual Overview. Evelyn R. McDonald 16 .. The Effect of Cultural Expectations on Progression Responses in ALS. Ann Kuckelman Cobb 17 .. The ALS Caregiver's Experience: An Impelled Journey. Ann Kuckelman Cobb, JoAnn B. Reckling, and Karen J. Fernengel 18 .. Amyotrophic Lateral Sclerosis: Legal and Ethical Issues. Mark R. Glasberg 19 .. Hospice: A Family Approach to Amyotrophic Lateral Sclerosis. N. Michael Murphy and Barbara Thompson 20 .. Mourning and Amyotrophic Lateral Sclerosis. N. Michael Murphy 21 .. Long-Term Care: The Financial Realities. Brian S. Gould 22 .. ALS: The Experiences of Health Care Professionals. Marlene A. Ciechoski 23 .. Patient and Family Support Groups in ALS. Helen Ann Bower 24 .. The Role of the National Voluntary Agency in ALS. Lynn M. Klein 25 .. Resources for ALS Patients and Their Families. Kristen L. O'Donovan (8) ===== PEG (a partial search) ========== Connecting to the CINAHL database ... This CINAHL database contains citations published between 1983 - 1994 from nursing and allied health literature indexed by CINAHL Information Systems. There are 172,867 documents in this information base. The last update was performed on Tuesday May 31, 1994. Searching ENTIRE database Searching for TERM = PERCUTANEOUS ENDOSCOPIC GASTROSTOMY* ============================================== Title : Percutaneous endoscopic gastrostomy tubes: the nurse's : role in a moral, ethical, and legal dilemma Author : Barnie DC Source : GASTROENTEROL NURS : 1990 Spring; 12(4): 250-4 (17 ref) ============================================== Title : PEG/PEJ: implications for nursing care... Percutaneous : Endoscopic Gastrostomy... Percutaneous Endoscopic : Jejunostomy Author : Kundtz JE Source : SGA J : 1984 Summer; 7(1): 22-5 (7 ref) ============================================== Title : Percutaneous endoscopic gastrostomy Author : Bruckstein DC Source : GERIATR NURS : 1988 Mar-Apr; 9(2): 92-3 (6 ref) ============================================== Title : Nutritional support: percutaneous endoscopic gastrostomy Author : Beck ML Source : NURSING : 1989 Apr; 19(4): 76-7 ============================================== Title : Percutaneous endoscopic gastrostomy feeding tube in : neuroscience patients Author : Guenter P Source : J NEUROSCI NURS : 1989 Apr; 21(2): 122-4 (5 bib) ============================================== Title : Care of patients after percutaneous endoscopic gastrostomy : (PEG) tube placement Author : Jackson B Source : GASTROENTEROL NURS : 1989 Fall; 12(2): 131 ============================================== Title : A safer gastrostomy for the high-risk patient... : percutaneous endoscopic gastrostomy Author : Johnson S Source : RN : 1986 Mar; 49(3): 29-32 (3 bib) =============================================== Title : A superior method of tube placement: percutaneous : endoscopic gastrostomy Author : Fawcett HV Source : PROF NURSE : 1990 Nov; 6(2): 92, 94, 96 (7 ref) =============================================== Title : Taking care of percutaneous endoscopic gastrostomy Author : Starkey JF;Jefferson PA;Kirby DF Source : AM J NURS : 1988 Jan; 88(1): 42-5 (3 ref) =============================================== Title : Percutaneous endoscopic gastrostomy: what are the : benefits, what are the risks? Author : DiLorenzo J;Dalton B;Miskovitz P Source : POSTGRAD MED : 1992 Jan; 91(1): 277-81, 293-6 (15 ref) =============================================== Title : Going home with a percutaneous endoscopic gastrostomy: : a reference for patients and care givers Author : Noble AC Source : GASTROENTEROL NURS : 1992 Oct; 15(2): 90-1 (8 ref) =============================================== (9) ===== juvenile ALS ========== UPn 07/14 0318 Health Notes By EVA EMERSON ------ ANOTHER SWING AT LOU GEHRIG'S DISEASE: Scientists have located a gene that might be responsible for juvenile amyotrophic lateral sclerosis (ALS), a progressive neuromuscular disease similar to the one that afflicted Lou Gehrig, according to a study published in Nature Genetics. Northwestern University neurologist Teepu Siddique and his colleagues found the suspect area by analyzing the genes of 10 juvenile ALS sufferers, all from a single, inbred Tunisian family. Researchers hope to characterize the mutation in the gene in order to test their hypothesis that ALS is caused by a defect in the cell's defense against oxygen free radicals, which are toxic. Juvenile ALS is rare and genes for it must be inherited from both parents. As the disease progresses, muscle is laid to waste, while the mind remains unaffected. British astrophysicist Stephen Hawking suffers from a similar type of ALS. ------ (10) ===== ALS journal articles ========== =============================================== Title : Amorphous material of the skin in amyotrophic lateral : sclerosis: a morphologic and biochemical study. Author : Ono S; Nagao K; Yamauchi M Source : Neurology 1994 Mar;44(3 Pt 1):537-40 Abstract : We performed morphologic studies on skin from seven patients with ALS and seven control subjects. By light microscopy, the wide spaces that separated collagen bundles reacted strongly with colloidal iron and alcian blue in ALS patients. Electron microscopy revealed markedly increased amorphous material that was positive for ruthenium red in the ground substance. These findings were not present in controls. Quantitative amino acid analysis showed that the amount of total amino acids (nmoles per mg dry weight) was significantly decreased (p < 0.01) in ALS patients compared with that of controls, and there was a significant negative correlation between skin amino acid content and duration of illness in ALS patients (r = -0.83, p < 0.001). These morphologic findings and biochemical data indicate that the amorphous material, which is markedly increased in ALS skin, includes glycosaminoglycans. =============================================== Title : Conjugal amyotrophic lateral sclerosis: a report on two : couples from southern France. Author : Camu W; Cadilhac J; Billiard M Source : Neurology 1994 Mar;44(3 Pt 1):547-8 Abstract : We report two conjugal cases of amyotrophic lateral sclerosis (ALS) occurring between 1977 and 1991 in southern France (Languedoc-Roussillon). Although conjugal ALS may occur by chance, the description of two cases in the same area points to a role of environmental or genetic factors in the etiology of the disease. == end of als 112 ==