Date: Sun, 5 Mar 95 02:28:12 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#177 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#177, 05 March 1995) == == == == ------ 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 == == 540+ 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: 0 .. Editorial 1 .. re: Primary Lateral Sclerosis 2 .. Coldness in lower extremeties 3 .. ALS book by Dennis Kaye 4 .. neurontin 5 .. ALS/Neurontin 6 .. Communications Aid Manufacturers Association 7 .. Voice augmentation systems 8 .. financing home care, letter to the President, and more 9 .. quality of life 10 . ALS alternative experimental drugs (0) ===== Editorial ========== A *BIG THANKS* goes to Bill Bulkeley, Staff Reporter of the Wall Street Journal for his front page article "E-Mail Medicine" (27 FEB 95) about ALS. Thank you Bill for keeping ALS in the public eye, and thanks for mentioning the ALS Digest. There will be more about this in ALS Digest 178, which will be appearing very soon. rgds,bro (1) ===== re: Primary Lateral Sclerosis ========== Date : Sat, 25 Feb 95 14:29:01 -0500 >From : "Dr. Kenneth Fischbeck" To : pwhitemurp@aol.com Cc : bro@huey.met.fsu.edu Subject: RE: Primary lateral sclerosis ALS includes both "lower motor neuron" and "upper motor neuron" signs. Lower motor neuron signs include muscle weakness, atrophy, and twitching (fasciculation) that are caused by degeneration of the nerve cells in the spinal cord and brainstem that supply nerve input directly to the muscles. Upper motor neuron signs include muscle stiffness (spasticity) and increased reflexes that are caused by degeneration of higher order motor nerve cells in the brain that supply input to the lower motor neurons in the brainstem and spinal cord. It is not uncommon for patients to start with lower motor neuron signs and develop upper motor neuron signs later, or vice versa. A patient who has only lower motor neuron signs is said to have "spinal muscular atrophy". A patient who has only upper motor neuron signs is said to have "primary lateral sclerosis", because the upper motor neuron degeneration causes "sclerosis" (scarring) of the "lateral" columns in the spinal cord (the lateral columns are nerve fiber tracts that carry motor information from the upper motor neurons in the brain to the lower motor neurons in the spinal cord). Most patients with primary lateral sclerosis go on to develop typical manifestations of ALS, but some do not. The primary lateral sclerosis patients who do not develop ALS may have a different disease, like hereditary spastic paraparesis. Your cousin might do well to ask her neurologist what he or she means by the diagnosis of primary lateral sclerosis and what the implications are for her. I hope this helps. It is a little difficult to explain this sort of thing by e-mail. Let me know if you have any further questions. K. Fischbeck, M.D. Neurology Dept., Univ. Pennsylvania (fischbeck@a1.mscf.upenn.edu) (2) ===== Coldness in lower extremeties ========== Date : Fri, 24 Feb 1995 17:24:23 -0800 >From : lwinlaw@cyberstore.ca (Lyall Winlaw) Subject: Coldness in lower extremeties My wife Carole was diagnosed last July with ALS and initially it was a problem only in her legs, but now includes a weakness in her hands as well. She also seems exhausted most of the time. She is housebound mostly because she feels she dosen't have enough energy to go out. I would like her to join a support group, does anyone have any positive input re support groups for ALS. Also Carole has cold feet as well as her legs from the knee down, her Doctor says it has nothing to do with ALS, but I have found that we get better input by asking those with ALS, you can feel her feet and legs and they are cold to the touch, I am not sure if it is inactivity or something else, would appreciate any suggestions. Also as a family member of an ALS patient, I would highly recommend "Laugh I thought I would die" by Dennis Kaye, it is great testimony to the human spirit, plus he has a great sense of humour. Lyall Winlaw (3) ===== ALS book by Dennis Kaye ========== >From : MCCLAIN@rmcnet.robert-morris.edu (McClain, Susan) Date : Thu, 02 Mar 1995 11:04 EST Subject: ALS book by Dennis Kaye I am trying to find a book that was suggested on this list, "Laugh, I thought I'd Die: My Life with ALS" by Dennis Kaye. Does anyone have any suggestions of where I could find it? Thanks, Susan ===== = There is a very nice bookstore in Cambridge, MA called WordsWorth. = They are very complete, they service mailorder requests, and they = are set up with gopher, WWW, e-mail, FTP, etc. One can get more = information by e-mailing them at: info@wordsworth.com = I *think* they will be able to help with this book request. rgds,bro ===== (4) ===== neurontin ========== Date : Fri, 24 Feb 95 16:47 EST >From : rcarlson@edcen.ehhs.cmich.edu (Raymond S. Carlson) Subject: Re: ALS A friend of mine, from Bellaire, Michigan has a sister in New York (Queens) who is in an advanced stage of ALS. I live in Houghton, Michigan which is about 400 miles from Bellaire. Anyway, her sister in on a medication called Neurontin. My friend would like to know if anyone else is on that medication, what the dosage is and what are the results. My friend is going back to Bellaire early Sunday morning. Would it be possible to have a couple answers for her. I think she is going to New York in about two weeks. Thanks for everything Ray Carlson (5) ===== ALS/Neurontin ========== Date : Fri, 24 Feb 1995 18:37:19 -0800 (PST) >From : Leigh Redding Subject: ALS/Neurontin To : "Raymond S. Carlson" Yes, I am on Neurontin, also known as Gabapentin. I was started at 300mg. three times a day, (900 mg per day). After 30 days the dose was increased to 300 mg four times a day, (1200 mg per day). I am a 55 year old male with Bulbar onset, diagnosed in July of 1993. With the Bulbar onset I probably had ALS for 6-18 months prior to the diagnosed date and didn't know it. Things like slurred speech and swallowing difficulties. Who can can really say when they actually got ALS? After the diagnoses I went on the CNTF trial study until this last April when my CO2 level went up so much that my left lung collapsed when it received oxygen. That prompted my being fitted with a trach for the use of a ventilator. I sleep and rest on the ventilator. however I am able to stay off of it for 2 to 4 hours per day. The biggest thing I have noticed about the Neurontin is my swallowing has improved allowing me to eat by mouth and less by my feeding tube. I hope this is some help to your friend and wish them the best. Sincerely, Leigh Redding (6) ===== Communication Aid Manufacturers Association ========== CompuServe Mail Date : 01-Mar-95 15:33 EST >From: Greg Trautman [72262,1664] Subj : Communication Aid Manufacturers Association The Communication Aid Manufacturers Association presents workshops on augmentative and alternative communication aids that are open to, "consumers and their families, and others interested in assistive technology." These workshops are presented at locations throughout North America. ===== Their address is: = CAMA = 518-26 Davis St. Suites 211-212 = Evanston, Il 60201-4644 = TEL 1-800-441-2262 ===== Greg Trautman medcom@alaska.net 72262.1664@compuserve.com (7) ===== Voice augmentation systems ========== Date : Sat, 25 Feb 1995 21:10:26 -0800 >From : fdunne@ccnet.com (Frank Dunne) Subject: Voice augmentation systems My wife and I are currently looking for a voice enhancing system for her. The best one we have read about,so far, is the system 2000/versa by Words+ in Palmdale, Ca. We would be interested in hearing from others on different systems. My wife is comfortable using any of the present personal computer operating systems. Any info or advise would be much appreciated. Please contact at our e-mail address. Thanks.. (8) ===== financing homecare, letter to the President, and more ========== Date : Wed, 01 Mar 95 14:54:48 EST >From : kjm@joplin.att.com Subject: Dear ALS list subscribers, Attached is a letter that I have sent to President Clinton with regard to frustration over the situation patients and their families are put through during the course of any catastrophic illness (ALS in my fathers case). I am writing to this list to request information to find a way to financially be able to allow my father to return home. He is in the final stages of ALS (his respirator monitors and controls his breathing), but he has skipped a lot of the earlier stages. He has full motor functions (use of arms and legs, ...), and can still eat food. He is very sharp mentally, and still has a lot to offer society. I would expect that if he had access to his computer, he would be writing this request instead of me. I am sure my family's situation is not all that unusual. What resources are out there to allow someone with ALS to return home and live their life out without fear of financially crippling the rest of their family? I am very interested in hearing about how other readers of this list have dealt with situations such as this. Thank You!!! Sincerely, Keith Mayer kjm@joplin.att.com _________________________________________________________________________ Dear President Clinton, Until recently, I had no interest in health care reform other than the normal consumer outrage at high costs. This week I received news that is every Americans' nightmare, my father was diagnosed with a terminal disease, Amyotrophic Lateral Sclerosis (ALS). Normaly, I would not consider writing to the President of the United States about such a personal matter, but seeing as you have advocated a program of health care reform I thought one more personal story to illustrate why this issue must be addressed as a non partisan human issue is in order. My father Alfred Mayer is 73 years old. His life until recently has been the the American dream. He is a self made man who served his country in World War II, returned home, married and raised a family of four children. He became an accomplished professional musician (he is a Julliard graduate), educator (Brooklyn College, adult education programs, and private classes), and has started and successfully run a number of businesses related to the music industry. My father made one mistake in his life, he did not feel that he needed to plan for a catastrophic illness. By receiving the diagnosis of a terminal disease, his plans to retire and provide a comfortable life for himself and his wife of 45 years Annette come to a horrible end, Now begins a nightmare for his wife and four children (Scott Mayer, Wendy Lange, Bonnie Morton, and myself). We face paying astronomical health care bills for a period of up to three years (the length of time the doctor has allowed for the disease to run its course). We are faced with impoverishing my mother for the rest of her life in order to make my fathers last few days comfortable. My father wishes to return home for his final moments on earth to be with his wife and live in the surroundings he has established for himself over the last 45 years. My siblings and I are finding that this final wish is becoming increasingly impossible to grant. None of his children live within 50 miles of him, and cannot provide the 24 hour attention that his medical condition demands without risk of losing our jobs and ruining our lives. We have consulted with numerous social workers and have found that the current health care system is not set up to honor such requests. Instead we face the possibility of surrendering most of my fathers hard earned nest egg in order to provide a few short months of comfort in a nursing home. So much for the American dream. This is the American nightmare. I do not look forward to telling my father of the future that awaits him. He has always feared nursing homes, considering them as a dumping ground for the elderly and the unwanted. It will surely shorten his life further knowing that he must be remanded to nursing home care and that his wife might be left indigent with his children struggling to help her pick up the pieces of her life and continue. I offer my father's story to you as impetus to continue your struggle to create a health care system that works for America. I urge you to do this not for Alfred Mayer but for his five grandchildren (Sean, Riley, Kyle, Jessica, and WIlliam) for they surely will face similar tragedies in their future if American health care problems are not addressed soon! I also welcome any suggestions you might have as to how my family might be able to comply with my fathers wishes. I seem to have run out of possibilities. Sincerely, Keith Mayer kjm@joplin.att.com (9) ===== quality of life ========== Date : Fri, 3 Mar 1995 12:38:26 -0500 >From : BDominion@aol.com Subject: quality of life I would like to know if there a quality of life scale used to measure ALS patients, for example on admission to a clinical trial. Please let me know if you can refer me to any appropriate sources regarding quality of life Thanks (10) ===== ALS alternative experimental drugs ========== Date: Fri, 3 Mar 1995 22:03:43 -0500 >From: OAKPSY@aol.com Subject: ALS alternative experimental drugs Has any research been done on the following experimental drugs on ALS? Hydergine (up to 9 grams per day), Vinpocetine, Piracetam, Deprenyl, Aminoguanidine, Centropheoxine, Isoprinosine, Minaprine, Vasopressin, L-Dopa, Bromocryptine, RNA Therapy, Phenytoin, DHEA, Inderal? Possibly a combination of any one of these experimental drugs? Sincerely, Duane Oaks === end of als 177 ===