=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #818 (12 March 2001) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == 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 == == 4700+ subscribers in 70+ countries. Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed. This newsletter is not intended to == == provide medical advice on individual health matters. == == Any such advice should be obtained personally from a == == physician. == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@met.fsu.edu (Bob Broedel) == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://www.glnicholas.com/ == == http://www.alslinks.com == == http://www.alssurvivalguide.com == == http://cc4144-a.ensch1.ov.nl.home.com/~digest == == http://health.oldeman.net == =============================================================== CONTENTS OF THIS ISSUE: 1 .. traveling with ALS 2 .. some questions 3 .. AP Corrects Cell Implant Story 4 .. Need some help ... 5 .. Care Giver 6 .. Symposium 7 .. "Living With ALS" Symposium 8 .. Alternative Treatments 9 .. artificial means of support vs none 10 . Disappearance of ALS from Guam 11 . ALS CANADA NEWS 2001 - #4 (1) ===== traveling with ALS ========== >From : "JHayes" Subject: Date : Sat, 10 Mar 2001 16:03:46 -0600 May 4th and 5th, we need to travel from Austin to Dallas for the graduation of our son from seminary. Could anyone advise us on the possible rental of a wheelchair accessible van? It would need to be the type that my husband could stay in his wheelchair. Does anyone know of any resources? Also, do you know of any motels, etc., that would have "hospital-like" beds? How do some of you travel if a hospital bed is needed for sleeping? Thank you. Sandy Hayes Hayesend@281.com (2) ===== some questions ========== Date : Mon, 12 Mar 2001 12:05:48 -0800 >From : "Sarah Pike" Subject: Re: I am wanting to put a question out for discussion and comments, using the sip and puff switch and sip and puff drive control with ALS clients, both those who have bulbar symptoms and those without. AS an OT, I have not been using this method of access related to poor oral motor control and the SLP and I are trying to re-address this method of access and hence I would like people's feedback and experiences. Thanks, Sarah (3) ===== AP Corrects Cell Implant Story ========== >From : Greg Date : Sun, 11 Mar 2001 18:28:51 EST Subject: Re: stem cell failure > >March 8, 2001 > >AP Corrects Cell Implant Story > >By THE ASSOCIATED PRESS > >Filed at 4:02 p.m. ET >In a story about experimental brain cell implants to treat Parkinson's >disease, The Associated Press reported erroneously on March 7 that >researchers had used fetal stem cells, which are master cells that can >develop into many different kinds of cells. Actually, the researchers >used fully developed fetal brain cells. > (4) ===== Need some help ... ========== >From : "Natasha Betz" Subject: Need some help.... Date : Mon, 12 Mar 2001 12:22:04 Hi, my name is Irica, I'm a Brasilian girl and I have 18 years, my father has ALS for 10 years, now he is very injured because of the ALS. He doesn't even comunicate anymore...and I feel very gilty because I was kind of careless about him all these years. Anyway, I'm asking for some help, because just now, after 10 years, I'm trying to find some answers. Why ALS happened to him? How it happened? What is ALS?. If you could explain some of these questions to me I'll apreciate it a lot! I would like to make contact with other people who share the same problem. Sincerely, Irica (5) ===== Care Giver ========== Date : Wed, 07 Mar 2001 21:07:58 -0500 >From : Andrew Jackson Subject: Care giver Single Senior Gentleman with Juvenile ALS, who lives in an upscale retirement community in Parkville MD 21234, needs a strong male caregiver to live in. This is an attractive position. If you or anyone you may know is interested please contact me at ajack10@bellatlantic.net Thank you, Andy Jackson (6) ===== Symposium ========== Date : Mon, 05 Mar 2001 16:38:07 -0500 >From : Robin Swope Subject: Symposium National Capital Area Chapter Presents Living for Today.... Looking Toward Tomorrow A Symposium Managing Amyotrophic Lateral Sclerosis Sat. March 31, 2001 9-2:30PM INOVA Fairfax Hospital Physician's Conference Center 3300 Gallows Rd. Falls Church, VA Speakers: 10-11:30 Dr. Ruediger Kratz Clinical Professor Georgetown University Director Neuromuscular Clinic ALS Overview/Genetic Aspects Dr. Raul Mandler Professor of Neurology Director, The Nation's Capital ALS Center of the George Washington University Disease Management Multidisciplinary Team Approach 11:30-12:00 Panel Discussion Q & A 12:00-1:00 Lunch 1:00-1:30 Dr. Marie Borum Associate Professor of Medicine Division of Gastroenterology George Washington University 1:30-2:00 Tanya Brackman, RD Nutrition 2-2:30 Q & A The cost of the symposium is Free and it is open to all ALS patients and their caregivers. Health care professionals and others who have an interest in learning more about living with ALS are asked to donate $15.00 to NCAC-ALSA to cover the cost of the lunch. Registration by ALL is necessary to insure adequate seating and to provide lunch. -- Robin Swope, MSW Patient Services Coordinator National Capital Area Chapter ALS Association Administrative Office: 615 S. Frederick Ave. Suite 308 Gaithersburg, MD 20877 Chapter Office:301-978-9855 Chapter Fax: 301-978-9854 rswope@alsa-ncac.org Home Office: 301-428-9922 Home Fax: 301-774-3016 rswope@alsa-ncac.org (7) ===== "Living With ALS" Symposium ========== >From : BTep100@aol.com Date : Sun, 11 Mar 2001 08:29:54 EST Subject: MA Chapter ALS Association "Living With ALS" Symposium HOLD THE DATE! MA Chapter ALS Association Annual "Living With ALS" Symposium Sunday, April 29th 12:00-4:00 p.m. Holiday Inn Conference Center Dedham, MA An invitation to a free educational conference especially for people with ALS and their families to explore the exciting frontier of research and disease management. This hallmark event is the most well attended educational forum that the chapter sponsors and it draws people from several states. Dr. Robert H. Brown, Jr. and Dr. Merit Cudkowicz will focus on research. Dr. Brown is Associate in Neurology at Masachusetts General Hospital, Director of the Cecil B.Day Laboratory For Neuromuscular Research, MGH and Professor of Neurology at Harvard Medical School. Dr. Cudkowicz is Assistant in Neurology at MGH, Assistant Professor of Neurology, Harvard Medical School and Co-Director of MGH Neurology Clinical Trial Unit and ALS Clinic. Attendees will have an opportunity to pose questions about disease management to a panel of experts: Dr. David Chad, neurologist, Dean Hess, respiratory therapist and Suzanne Danforth, speech and language pathologist. Dr. Chad is a neurologist at UMass Memorial Health Care and Professor of Neurology at UMass Medical School. Dean Hess is a respiratory therapist at MGH, Assistant Director of Respiratory Care, MGH and Assistant Professor of Anesthesia, Harvard Medical School. Suzanne Danforth is a speech and language pathologist at MGH. Attendees will also have time to talk with several exhibitors and check out the handouts at the popular resource tables. Exhibitors include: 1. Clarence E. Smith, Respiratory Therapsist (Demonstration of the In-Exsufflator) 2. Design-Able, Inc., Medical Supply Company 3. Massachusetts General Hospital, Physical Therapists (Exercise Demonstrations) 4. Muscular Dystrophy, Nonprofit Serving Neuromuscular Diseases 5. Ride-Away Corporation, Vehicle Sales and Service 6. Spaulding Rehabilitation Hospital, Assistive Technology Center Speech, Occupational and Physical Therapists 7. TLC Home Care Agency 8. Whole Person Health Multidisciplinary Holistic Clinic Therapist, Nutritionist, Massage Therapists 9. SHINE, Counselor (Information on health insurance options) A new feature will include a swap table of aids for daily living. If you have small aids for daily living that you are no longer using and they are in excellent condition, bring them to our swap tables so they can be passed on to other PALS. An occupational therapist will be present to help you with your selections. Some adaptive equipment that we can pass on at the symposium includes but is not limited to: built-up utensils, universal cuff, T-handle mugs, reacher, dressing stick, zipper pull, button aid, sock donner, adaptive shoe laces, extended handle brush, electric razor, universal remote control, videos, cassettes, books on tape, book holder, writing aids, phone holders, kitchen aids headmaster collar (no soft collars). We cannot pass on food or medications. Please register to attend by calling the MA Chapter ALS Association at (781) 245-2133 or 1-800-258-3323. We will make special seating arrangements for people using wheelchairs and we will also have wheelchairs available for those who would like to use one. Please let us know when you call. PLEASE REGISTER BY APRIL 17th (We would like to have an accurate count) We look forward to seeing you! (8) ===== Alternative Treatments ========== >From : Irina Carvalho Subject: Alternatives Medecins Date : Fri, 9 Mar 2001 12:55:37 -0000 I need some information about Homeopathic Theraphy. Here in Portugal my mother PALS went to a Homeopathic Doctor that gave her some medecins to take for the disease. I need to now how can I look in the internet if the medicins are ok for PALS. He told her she would have to make a choice between drugs from the hospital and homeopatic medicins. What should I do? Can I trust this or should I consider the Hospital treatment that will be next 13th March. Who can give a site or link were I can search if the homeopatic medicins that are really for ALS or if I'm being deceived. Please it's Urgent! Thank you and good bless you all. Irina in Portugal (9) ===== artificial means of support vs none ========== >From : Attheisland@aol.com Date : Fri, 2 Mar 2001 09:00:34 EST Subject: Submission of Inquiry to The ALS Digest There have been frequent postings on increased longevity in PALS who opt for artificial means of support, i.e., feeding tube, BiPap and the eventual vent. My question concerns those PALS who have not adopted any of these measures. It would be very useful to hear from those patients--or their caregivers--who have survived quite long periods--longer than four years from initial onset or beyond medical expectation--and to what basic factor(s) they would contribute this success. Thank you for replying to either: attheisland@aol.com or this digest. (10) ===== Disappearance of ALS from Guam ========== Date : Fri, 09 Mar 2001 01:57:40 -0500 >From : Linda Carlton Subject: Disappearance of ALS from Guam: implications for exogenous causes Rinsho Shinkeigaku 1995 Dec;35(12):1549-53 http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query_old?uid=8752460& form=6&db=m&Dopt=b [Disappearance of ALS from Guam: implications for exogenous causes]. [Article in Japanese] Chen KM Department of Neurology, Guam Memorial Hospital. The author reports the disappearance of amyotrophic lateral sclerosis (ALS) from Guam over past 30 years, which coincided with rapid changes in the ecology, socioeconomy, and westernization of the life style. This slow but steady decline is believed to be the consequences of radical changes from food collection to wage-based life style and dietary improvement in recent years and elimination of exogenous factors. Those risk factor(s) are believed to be the environmental trace metals which must have triggered the accelerated oxidative stresses in the motor neurons of genetically susceptible population. Changing Epidermiology: 1. The annual incidence of 70/100,000 in 1960s down to 7/100,000 in 1990s, and remained unchanged for past 15 years. 2. Upward shift of age at onset by 10 years and at death by 8 years and even out of sex ratio. 3. Birth cohort analysis showed less risks for those born after 1920. No ALS cases born after 1945. 4. No increase in the incidence of ALS among non-Chamorros transients of Guam and Marianas during W.W.II. 5. Long-term resident non-Charmorro and half-Chamorros on Guam are also affected. 6. Charmorro migrants to U.S. Mainland are affected after long absence from Guam. 7. Incubation period for both ways is estimated to be 18 approximately 20 years. 8. Other forms of dementias like Alzheimer disease (AD) and vascular dementias are on the rise and the leading cause of death is cerebro- and cardiovascular diseases. 9. ALS is also declining in past 10 approximately 15 years in Kii peninsula, and West New Guinea. Changing Ecology of Guam: 1. One third of Island land was used for construction of huge military bases after W.W.II. 2. Urbanization of villages including concrete houses, deep well water supply, sewage, and electrification. 3. Tourism boom: high-rise hotels, development of 7 golf courses and other recreational facilities resulted in loss of flora and erosions of soil. Socioeconomic Changes: 1. Shift in population demography; Efflux of Chamorros and influx of aliens; Chamorros less than 50% by 1990. 2. Tourists passed 1 million in 1994. 3. Automobiles 1 car/1.5 person. 4. Westernization: After W.W.II, almost free access to Military Commissary for imported food and appliances. 5. Life style: from food collection to wage-based society. Genetic Studies: 1. Familial aggregations, but no clear-cut Mendelian inheritance. 2. Segregation analysis: no absolute genetic or environmental cause but additive gene component may play a role in genetic susceptibility and basis for geographical clustering. 3. Absence of Apo-E or Mu/Zn SOD genes. 4. Recent discovery of mtDNA Complex I deficiency in Parkinsonism-dementia cases suggests mitochondrial DNA abnormality. Comparative Environmental Studies: 1. Environmental studies in three hyperendemic areas in the Western Pacific--Kii, Marianas, and west New Guinea, where strikingly high incidences of ALS is known to occur, found the identical geochemical environment--low Ca, Mg, and Zn and high A1, Mn, Fe, Si, in the garden soil and drinking water. 2. Exogenous etiologic factors that are absent from primitive culture of Auyu and Jackai tribes in West New Guinea were eliminated. 3. Cycad neurotoxicity has been excluded. 4. Suspected exogenous agents that are common in these 3 hyperendemic areas are (a) locally grown vegetables, starchy roots, and reef fish; (b) surface water containing soluble organic minerals from red laterites; (c) rain water that is chemically pure and lack of essential minerals. Pathogenic Speculation: Chronic dietary deficiency since birth in Ca, Mg and Zn induced excessive absorption of divalent cations which accelerates oxidant-mediated neuronal degenerations in a genetically susceptible population. The process is probably carried through interactions between cytoskeletal abnormality of the neuron, aging process, abnormal proteins, and mitochondrial dysfunction. PMID: 8752460, UI: 96325766 (11) ===== ALS CANADA NEWS 2001 - #4 ========== >From : "Susan" Subject: ALS CANADA NEWS 2001 - #4 Date : Tue, 27 Feb 2001 09:17:07 -0500 How Can People Help? The ALS Society of Canada is seeking advice from people with ALS and their caregivers. (Please forward this message to any you know who might like to make a contribution.) We are aware of these two things: Caregiving is clearly focussed on the person with ALS. Often this means other things become secondary or are neglected. Friends and neighbours often want to help in some way. Sometimes they don't know what to do or how to initiate the conversation. We are asking then, What is your experience with this situation? What have you done or said when someone says, "How can I help?" What kind of help do you need from others? What do friends and family need to know in order to help out? Is there a resource that the ALS Society could develop for you to give to friends that would help orient them to your situation and needs? We invite you to participate in a conversation about these issues. To contribute, we invite you to join an e-group conversation by clicking on the link below and joining the conversation. You can choose to 'listen in'. You will receive a daily e-mail containing the comments that others have made. You can choose to 'talk' by offering your contribution which will be 'heard' by all the others who join the group. Again you will receive a daily e-mail with all the contributions from that day. We will keep the conversation going until the subject seems to have been exhausted. The information will enable the members of the ALS Society Support and Education Resource Committee respond to this need in the most appropriate way. The group consists of Diana Rasmussen, chair, from the ALS clinic in Winnipeg and the Unit Director of ALS Manitoba and Vice President of ALS Canada; Barb Yorston, Unit Director of ALS Society of NB whose husband died of ALS; Ann Rowe, from the ALS clinic in London, Ont; Ben and Linda Lindberg from Richmond Hill, Ont - Ben who is on the board of ALS Canada has ALS and Linda is his caregiver; Janice Hegel, from the ALS clinic in Calgary; Marjorie Griffin from the GF Strong Centre, Vancouver, is also on the Board of ALS Canada; staff support is provided by Susan Graham Walker Join the conversation by going to http://groups.yahoo.com/group/how_can_people_help If you have questions or need further assistance, please contact Susan Graham Walker - sgw@als.ca _________________________________________ To provide care and find a cure for ALS. Its time for a cure. Its time to care. Call to participate. Charitable registration: 10670 8977 RR0002 Susan Graham Walker Manager of Communications and Special Projects sgw@als.ca 800-267-4257 416-497-1256 fax 416-497-2267 ext 208 alscanada@als.ca www.als.ca 265 Yorkland Blvd., Suite 300, Toronto, Ontario M2J 1S5 === end of alsd 818 ===