=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #820 (17 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Employment and ALS ... 2 .. ALS Updates in the New Millenium 3 .. Van for sale 4 .. re: Alternative Treatments 5 .. Wheelchair use by PALS 6 .. Post-doctoral Fellowships 7 .. re: pain in the heels 8 .. My brother David Brooks (1) ===== Employment and ALS ... ========== Date : Thu, 15 Mar 2001 10:16:20 -0500 >From : David McNaughton Subject: Employment and individuals with ALS who use augmentative and : alternative communication We have recently completed a study in which 7 individuals with ALS who use augmentative and alternative communication participated in a focus- group discussion hosted on the WWW. Participants discussed supports and barriers to employment for individuals with ALS, and also generated a series of recommendations for individuals with ALS and their employers. To see a brief text summary of the research project, please go to http://mcn.ed.psu.edu/~emp/Emp/Presentations/ALSemp/ALSempText to see a PowerpPoint presentation which provide additional details, please go to http://mcn.ed.psu.edu/~emp/Emp/Presentations/ALSemp/index.htm For a comprehensive description of the project, please write to David McNaughton at dbm2@psu.edu and he will send you an electronic copy of the in-press manuscript. We hope you find the materials to be of interest, and our thanks again to the individuals with ALS who participated. -- David McNaughton Assistant Professor Department of Educational and School Psychology and Special Education 227 CEDAR Building, The Pennsylvania State University, University Park, PA, 16802 (Phone) 814-865-7159 (Fax) 814-863-1002 (2) ===== ALS Updates in the New Millenium ========== Date : Thu, 15 Mar 2001 15:52:18 -0500 >From : krusinsk@salus.med.uvm.edu (Patti Krusinski) Subject: ALS Conference Vermont ALS Center is having an ALS Conference for patients, caregivers, family members and health care providers. Continuing medical education credits will be given for attendance. TITLE: "ALS Updates in the New Millenium" Dates - late afternoon 6/7/01 & all day 6/8/01 Location: The Cliff House in Ogunquit, Maine Vendors will be available during both days with a reception in the vendor area Thursday evening. Guest Speaker: Dr. Robert Brown, Massachusetts General. Objective of the conference: To present the most up-to-date ALS research information and provide tools to help give the best care possible to those that may live in more remote areas and do not have access to the larger centers. Patty Krusinski, Executive Director Northern New England Chapter, ALS Association (3) ===== Van for sale ========== >From : "MARGARET HANSON" Subject: Van for sale Date : Wed, 14 Mar 2001 22:45:13 -0800 Hello all. This is my first contact writing. My husband was 40 years old when he was diagnosed with ALS, July 96. We had been married 13 months, second marriage for both of us. He had no idea what the illness was or what was ahead of him. We live in a community of about 7,500 on the eastern edge of Nebraska, near Omaha. He was a faithful reader of this Digest and gave to me the articles that he knew I would most want to read or follow-up on. Believe it or not, I had 2 neighbors die from ALS within two blocks of my house, within several years, both good friends, so I had first-hand knowledge on what lay ahead for me/us. I did not, however, have first-hand knowledge about the middle of the night happenings, what lack of sleep would do to both him and me and how we would get through the time we would have together. We opted for the feeding tube, which was done Jan 98, and the vent which we did March 2000. His lung capacity was getting less and he was having more problems breathing at night. His goal was to see his son graduate from high school last May. We accomplished that goal. My husband passed away Jan 19 of this year, not as a direct result of the ALS, but from a blood clot that broke loose, the doctor thinks from one of his legs, and traveled to just the right spot to quickly take him. We kept him on life support for two days until his father could come from Florida and a sister from NY to say goodbye. It was a joint decision to remove the vent and he slipped away very peacefully. We knew we had made the right decision. Ironically within about 10 days of my husband passing away, two other ALS friends from our support group also died. For as rare as this is supposed to be, we certainly seem to have a lot of it here in our area. I am now trying to put my life back together, find a job and decide what I will do for the rest of my life. I had been his primary caregiver. One hurdle I must jump now is selling the IMS ramp van we have. A good friend and my brother-in-law found it, financed it and had it ready for us when we were ready to use it. It is a 1997 Dodge Grand Caravan SE, 4 brand new tires, a new 5-year battery, new exhaust and 69,300 miles, majority of those miles being highway as I drove him to and from work for about two years. It has lowered floor, dual control front heat, AC and additional rear heat/cool, with tiedowns. I expected we would be needing it for at least several more years, since my husband still had enough leg strength to help support weight as I transferred him from bed to wheelchair and recliner. We are asking $17,500 as this is the payoff on the loan. It is a good van and ready to roll. I'll keep following this site as ALS and the MDA Labor Day telethon will always have my interest and be a part of my life. For those of you caregivers who need someone to talk to, I'm available. The days are rough and the nights long. I know what you are going through and if I can help you in any way, I would be happy to. (4) ===== re: Alternative Treatments ========== >From : Bernie Windham Subject: re: Alternative Treatments (some options to research) Date : Tue, 13 Mar 2001 09:50:42 -0500 Irina asked: 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. ******************************************* I would choose a treatment that is based on attempting to cure the underlying cause. My paper documents some of the causes, and some who've gotten better by dealing with them (see my web site: www.home.earthlink.net/~berniew1) There are also some other options and treatments I'll provide web sites for, most are medical labs or clinics that have experience with the condition or similar conditions: Infinity Labeling Lab www.altcorp.com documentation on causes and tests Immunosciences Lab http://www.immuno-sci-lab.com/intestin.html See info on mycoplasma MELISA labs www.melisa.org see research info on causes, ALS, treatment Pfeiffer Clinic / Health Research Institute, www.hriptc.org/ Great Smokies Diagnostic Lab www.gsdl.com (by conditions) and search news (they have a good test for ALS treatment, comprehensive liver detox test) Perlmutter Clinic, Naples Fl, http://www.perlhealth.com/ neurologist- good experience with chronic neurological conditions/ HBOT/etc.) Huggins www.hugnet.com Edelson Clinic (www.edelsoncenter.com) Gerson Clinic (and treatment) www.gerson.org (or .com) Hulda Clark Cure for All Disease (book widely available) & web (search) (5) ===== Wheelchair use by PALS ========== >From : Dasroster@aol.com Date : Tue, 13 Mar 2001 00:19:31 EST Subject: Wheelchair use by PALS: A survey from Baylor Wheelchair use by patients with amyotrophic lateral sclerosis: A survey of user characteristics and selection preferences. Trail M, Nelson N, Van JN, Appel SH, Lai EC Department of Physical Therapy and Occupational Therapy, Methodist Hospital (Trail); Department of Neurology, Baylor College of Medicine (Nelson, Van, Appel, Lai), Houston, TX. [Record supplied by publisher] Trail M, Nelson N, Van JN, Appel SH, Lai EC. Wheelchair use by patients with amyotrophic lateral sclerosis: a survey of user characteristics and selection preferences. Arch Phys Med Rehabil 2001;82:98-102. OBJECTIVES: To determine wheelchair types and features that are most beneficial to patients with amyotrophic lateral sclerosis (ALS), to ascertain at what stage of disease and disability patients benefit from wheelchair use, and to pinpoint the differences in patient characteristics between the users of manual and motorized wheelchairs. DESIGN: Internally generated questionnaire. SETTING: A neuromuscular clinic. PATIENTS: Forty-two patients (28 men, 14 women) with ALS who used wheelchairs and whose mean age was 53.9 years (range, 32-75yr). Main Outcome Measure: Wheelchair users completed a 39-item survey. RESULTS: At the time of the survey, the patients' mean Appel ALS rating scale total score was 84.5 (range, 48-138), indicating moderate disability. Forty-one patients reported that wheelchairs permitted them greater interaction in their communities; 33 were "very satisfied" with the positive impact of wheelchair use on their activity levels. Most users did not work and needed caregiver assistance for activities of daily living. The most desirable wheelchair features provide extra comfort (supports for the head, neck, trunk, extremities) and have improved maneuverability (lightweight frame, smaller wheelbase). Undesirable features are low sling backs and sling seats, nonremovable static leg rests, and large frames. No significant differences were reported between manual wheelchair users and motorized wheelchair users in terms of overall disease symptom severity, arm and leg strength, and bulbar function. However, motorized wheelchairs offer patients a greater sense of independence and an improved sense of well-being. CONCLUSION: Information obtained directly from wheelchair users with ALS provided first-hand experience concerning the most and least desirable features of wheelchairs and may help other ALS patients make informed decisions when purchasing a wheelchair. Copyright 2001 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation PMID: 11239293 (6) ===== Post-doctoral fellowships ========== Date : Thu, 15 Mar 2001 14:00:52 -0500 >From : Jimmy Abbas Subject: Post-doctoral fellowships in SCI/TBI Research UNIVERSITY OF KENTUCKY POSTDOCTORAL FELLOWSHIPS IN SPINAL CORD AND BRAIN INJURY RESEARCH The Spinal Cord and Brain Injury Research Center (SCoBIRC) at the University of Kentucky College of Medicine invites applications for four post-doctoral fellowships. These fellowships are funded by the Kentucky Spinal Cord and Head Injury Research Trust and provide competitive salary and benefits for two years. Applicants should have a Ph.D or M.D. in neuroscience or a related discipline and are expected to develop a strong research project in conjunction with one or more of the SCoBIRC faculty (www.mc.uky.edu/scobirc/faculty.asp). Fellowship applications will be reviewed beginning April 1 for appointment beginning July 1, 2001. Applications should include a curriculum vitae, statement of research interests, and the names, addresses, and phone numbers of at least three references. Applications should be sent to via email (jgeddes@uky.edu) to James W. Geddes, Ph.D., Director, Spinal Cord and Brain Injury Research Center, Sanders-Brown Building, University of Kentucky, Lexington, KY 40536-0230. Telephone: 859-257-1412 ext. 254; FAX: 859-323-2866. Additional information is available online at www.mc.uky.edu/scobirc/postdoc.asp. Women and minority candidates are encouraged to apply. The University of Kentucky is an Affirmative Action/Equal Opportunity Employer. ------------------- James J. Abbas, PhD Center for Biomedical Engineering email:abbas@uky.edu Wenner Gren Research Laboratory tel. 859-257-4261 University of Kentucky fax. 859-257-1856 Lexington, KY 40506-0070 www: http://www.uky.edu/RGS/CBME/abbas.html (7) ===== re: pain in the heels ========== >From : "Ballard, Marcy" Subject: RE: Date : Tue, 6 Mar 2001 12:52:53 -0800 When my husband had pain in his heels, we found that frequent foot baths and baths in general helped, not showers, baths. We got a plastic horse trough which is fairly light when my husband could not longer walk. We got a plumbers y and attached it to the washing machine so that we could have hot water. The local hardware people helped us figure it out. We brought the horse trough in from the deck when we needed it. We filled it with water and used a hoyer lift to lower him in. If you are ambulatory, you can use plastic basins. We also found frequent massages helped. Some people use paraffin soaks ( very warm wax baths) We also found that the pain decreased when we kept his feet elevated. Hope this helps. M. Ballard (8) ===== My brother David Brooks ========== Date : Fri, 26 Jan 2001 22:08:27 +0000 >From : "david.brooks5" Subject: My brother David Brooks subscribed to your newsgrouop. He was diagnosed with Motor Neurone Disease in May 1996 but had begun experiencing symptoms about 18 months earlier. He died on Monday 22 January at Glan Clwyd Hospital in North Wales - he was aged 43 and the 2nd MND victim in this immediate area during the period of one week - unusual in such a small area. David had to be admitted to hospital three days before Christmas with a mild infection which developed into a more serious chest infection. Up until Christmas, he was still living at home, cared for by a team of support workers, his GP, community nurses and me (his sister) and my partner - Richard. We had additional support from my parents who live literally a stone's throw away. David was a real man's man - very brash and physically a giant, six foot eight inches tall and weighing in at eighteen stone, he used to play rugby and in his younger days was a fine athlete. Prior to his illness, he was an agricultural contractor and farmer, but on leaving college, he had aspirations towards being an engineer - he made good use of his practical skills on the farm tho' adapting and repairing his agricultural equipment. He was a self-taught PC user and realised that the internet could be an invaluable source of information regarding his illness. Here in the UK, the MND Association, whilst providing good support to individuals seems somewhat fragmented - the on-line service has only recently come into being. Finding out information about equipment and aids to make David's life easier has been a nightmare and again largely successful due to our own research. I know he found your ALS Interest Group a tremendous support and he felt that it gave him an up-to-date picture of developments regarding the disease. We desparately need something similar in this country. Immediately before his last visit the the hospital, David had become totally dependant on others and was only able to move his legs a little when lying down (usually on his sofa) - this enabled him to operate a "Possum" switch - a housekeeping system by which David could control heating, lights, TV/hi-fi, telephone (with and adapted microphone/speaker) and call button and alarm. His only other independant movement was to turn his head side to side when lying down. His speech was very slurred and whispery; breathing shallow; swallowing often presented difficulties but David had already rejected a PEG feeding system. Nevertheless, he still maintained a cheerful appearance, was always glad to see his few visitors (diminishing as communication problems increased) and, whenever he felt he was causing problems because of his poor health, he would apologise. David's relationship with his girlfriend of 18 years broke down completely 12 months ago, when she asked us (his family) to move him out over Christmas whilst she visited her family. She visited him a couple of times after that but couldn't handle David's bitterness towards her and walked out during the 2nd visit. During his last year, he spent the first six months in a nursing home and then, when we had completed renovations and adaptions, he was able to move into a small cottage with my boyfriend and me. Now he's gone leaving an enormous hole in all our lives. My main regret is that he wasn't able to spend more time with us here at the cottage. We all miss him so badly and know the pain will take a very long time to diminish. If any UK readers of this site would like to contact me I would be more than happy to pass on information that David found useful over the last 6 years although I appreciate that each individual case will vary in needs. This site was a source of comfort to David over the years as he could keep pace with any research/treatment developments going on in the US. I hope one day I will read of a successful treatment and still better, that the cause of this disease has been isolated and identified. Best regards to all PALS Keep on fighting Ceri Brooks Ty Draw Cottage North Wales UK === end of alsd 820 ===