Date: Mon, 9 Jan 95 22:42:02 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#164 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#164, 09 January 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 == == 440+ 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 .. sleep problem 2 .. Prodigy Update 3 .. re: Ricky & ALS 4 .. ALS in the military services 5 .. Charcot Marie Tooth (CMT) 6 .. Alzheimer's disease WWW Page (1) ===== sleep problem ========== Date : 08 Jan 95 17:43:19 EST >From : Wayne Phillips <70303.173@compuserve.com> Subject: sleep problem I'm looking for suggestions about sleeping. I have to wake my wife 3 to 6 times each night to turn me, since I can't turn myself any more. The sleep deprivation is wearing us down, especially her. It's making it difficult to be patient with our 5 and 16 year old boys. What have any of you done for this? Wayne (2) ===== Prodigy Update ========== Date : Thu, 5 Jan 95 20:43:17 PST >From : Kathy=Goeddel%CGG%InfoSys@banyan.BV.TEK.COM Subject: Prodigy Update: Neurontin Survey and Media Alert Here are a couple of interesting items from the Prodigy A.L.S. Medical Support bulletin board. The first shows the latest results of the Neurontin survey. The second is a "Media alert" about some of the Prodigy A.L.S. patients. Thanks goes to Barb Drummond and Sally Gill for these items. Neurontin Evaluations - Week 12 Of the 19 prodders participating as of week 8, 3 passed away between the week 8 evaluations and the week 12 evaluations. Two female, one male; all were limb onset; dates of diagnosis were 6/92, 3\93, and 5\93; two were taking CNTF; neurontin doses were 300 mg (1) and 900 mg (2). This leaves 16 participants, 13 male and 3 female. Dates of diagnosis are '88 (2) '89 (1) '90 (4) '91 (1) '92 (2) '93 (3) '94 ( 3) 13 limb onset, 3 bulbar onset. Dose levels are 300 mg (1) 600 mg (1) 800 mg (1) 900 mg (4) 1200 mg (1) 1500 mg (2) 1800 mg (4) and 2400 mg (2). Statistics for the 16 are as follows: B=better S=same W=worse Respiration: B 0% S 81.25% W 18.75% Speech: B 0% S 75.00% W 25.00% Swallowing: B 0% S 75.00% W 25.00% Dexterity: B 0% S 62.50% W 37.50% Mobility: B 0% S 62.50% W 37.50% Muscle Function:B 0% S 50.00% W 50.00% 4 prodders are taking Neurontin and CNTF. Their stats are: Respiration: B 0% S 75.00% W 25.00% Speech: B 0% S 75.00% W 25.00% Swallowing: B 0% S 50.00% W 50.00% Dexterity: B 0% S 75.00% W 25.00% Mobility: B 0% S 75.00% W 25.00% Muscle Function:B 0% S 50.00% W 50.00% Two more of the prodders have started taking Eldepryl which brings us to a total of 6 who are taking Neurontin and Eldepryl. Their stats are: Respiration: B 0% S 100.00% W 0% Speech: B 0% S 83.33% W 16.66% Swallowing: B 0% S 83.33% W 16.66% Dexterity: B 0% S 66.66% W 33.33% Mobility: B 0% S 83.33% W 16.66% Muscle Function:B 0% S 50.00% W 50.00% Side Effects: none (12) drowsiness (3) increased fasiculations (2) wobbliness (1) increased drooling (1) Please remember that these evaluations are subjective. Take care everyone Barb MEDIA ALERT ! ! ! WGN (Channel 9 in Chicago) is featuring medical bulletin boards on their Health Watch segment next Monday. Marshall Pines and Ben were interviewed today by Sonja Gantt, and the story should be as much about ALS as it is about bulletin boards. Ben's interview took over an hour, but of course we don't know how much they will use. There should be some good footage of Ben reading everyone's notes! The segment is supposed to air Monday January 9th during the 7:00 a.m. news (Central Standard Time) and again on the 9:00 p.m. news that night, if time permits. WGN has a number of cable outlets throughout the country, so you may want to check to see if it's going to be shown in your area. We'll let you know if we find out it's going to be on a different date or time. We want to thank Marshall for referring Sonja to us. She was absolutely delightful and most interested in ALS. Tune in! Sally & Ben (3) ===== re: Ricky & ALS ========== Date : Sun, 8 Jan 1995 23:41:19 -0500 >From : KeyOfF@aol.com Subject: Ricky998/ Handicap Digest #3692 Bob, I'm responding to a post in ALS Digest #163. This post was evidently forwarded from the Handicap Digest. I hope Richard will see this: ------------------- Hello, Richard: I just had to respond to your message in the Handicap Digest, which was also posted in the ALS Digest. I relate so much to what you wrote and empathisize with you from my heart. Your acount of your experience with this disease really touched me, as all stories of ALS patients do. Yours especially, though. My mother also suffered with ALS; she died twenty years ago. A long time ago, true, but I remember everything. It's something one doesn't forget. What struck me in your story is how similar it is to my mother's. Her symptoms also began in the left ankle. She complained of the weakness and was turning her ankle a lot - it was giving way quite often. When she sought medical help, she went through the same thing you did - tests, tests, and more tests. The first neurologist found nothing. After the very last test, he told her there was evidence that she had experienced a mild stroke. As time went on and her walking became progressively worse, she went back to him seeking answers, feeling very anxious. He could find nothing wrong - told her she should see a psychiatrist. Of course she had never had a stroke. Finally her illness was diagnosed, by another neurologist at Shands Clinic in Gainesville, FL. The diagnosis was more difficult to make then than it is today. Mother went through much the same progression you've experienced - the brace, the walker, then the wheelchair. The disease continued up the body until she was paralyzed on the left side. No, it's no picnic - that's for sure. In those days there were no drug trials, no treatment that might prolong life. Just elavil, an antidepressant, to help the patient tolerate the situation better. There's one question I would like to ask you. What is your age? My mother was 68 at the time of diagnosis. I just wanted to let you know that I'm thinking of you. Also, you're the first one I've heard describe the onslaught of his/her illness as beginning with weakness in the ankle. At one time, I thought the disease was the same in every patient, but now I know it isn't. Continue to share - I think it helps. it's wonderful to have these groups to compare notes, to seek answers, etc. it's something my mother didn't have. I hope you see this. My best wishes to you as you cope with this disease. Faye (4) ===== ALS in the military services ========== Date : 09 Jan 95 12:08:47 EST >From : "Ronald J. Leeb" <72613.2113@compuserve.com> Subject: ALS in the military services. Dear Bro, Please post this fax I sent to ALS Society of Ontario in regards to "Minister turns down veteran's appeal", of ALS Digest 162. Subject: ALS in the military services. Date : 03-Jan-95 at 09:05 >From : Ronald J. Leeb, 72613,2113 To : ALS Society of Ontario, FAX: 14164971256 Dear ALS Society of Ontario, I subscribe to the ALS DIGEST on-line and read about the Ontario ALS Society's support of veteran Arnie Briese's application for a disability pension due to his amyotrophic lateral sclerosis (ALS) being related to his military service, and on behalf of other veterans in similar circumstances. It noted that earlier awards for disability pensions to former sailors with ALS who have had long exposure to lead in oil-based paint on board ships have been made. Your National Service Bureau was kind enough to send me a copy of Drs. R. Merchant's & J. Guernsey's study "Is ALS More Common In The Navy?" I found their study of great interest. I would like to call your attention to an environmental toxin that I propose is the pathogen that is the cause of ALS. The Navy study hit upon the occupations or job exposures where this allelopathic toxin, ricin, is used. And although they found that ALS was *not* more common in the navy, they did find a "population-at-risk" for those in the navy during WWII. I believe I can explain that risk, and it's not lead, but ricin's use in the paint itself. Ricin is 10 to 1,000 times more potent and toxic than potassium cyanide and in the past has been used in fertilizer, according to a study done by the State of California. And I have been told that it is still being used in some mixed fertilizers today. Ricin is the toxin of the castorbean plant. The toxic properties of ricin are the equivalent or even surpass those found in such deadly bacterial toxins as tetanus and botulism. The castorbean plant is masticated into a pulp called the "pomace cake" or "poison cake" that is then put into some mixed fertilizers as an allelopath to kill a worm (nematode) that has a voracious appetite for foliage and crops. And "research has shown that genes controlling nematode development are strikingly similar to genes in other animals, including humans" (from NATURE REPORT, Gene Mutation Finding Advances ALS Research, By Robert C. Di Iorio). But more importantly to those Canadian sailors who thought that long term exposure to lead in oil-based paint was the cause of their ALS, I've also found references to ricin's use in paints & varnishes (as a mold growth inhibitor), in a variety of oils such as hydraulic brake fluids, in aviation fuels, and other consumer used products. I believe Ricin is the cause (pathogen) of Lou Gerhig's disease (ALS/MND), and what Ricin has been doing to the worms beneth our lawns, I believe that process in humans is called ALS. Besides the elevated rates or "clusters" of ALS seen in the navy, and in lawn sports, there have been clusters of ALS reported in the plastics industry (Chicago Tribune, Feb. 15 1987), in leather workers and in the print works industry (Merchant,"Is ALS More Common in the Navy?" Canadian Dept. of Veterans Affairs, March 1990, p.7), all of which use a derivtive of the castorbean's oil adopted to a particular use (one company offers 175 different derivtives alone: USDA, Texas A&M University, Castorbeans in Texas.). The castorbean plant is also found on the Island of Guam, and I theorize is the source of the ALS/PDC pathogen on the island. ( Do not confuse the castorbean plant with the cycad nut plant that others have sought to identify its nerve toxin as the pathogen, for the two plants are quite different.) Having been "well established" on Guam by 1905, the castorbean plant is today limited to several small areas on the island. This suggests a correlation between the high rates of ALS/PDC since the early 1800s on Guam and the lowering of those rates after 1955 with the disappearance of the castorbean plant from the island. My training is as an historian, not in medicine, but the data on the castorbean plant and its allelopathic toxin Ricin's link to ALS cries out to be investigated. I hope this info can in some way help Mr. Briese. Sincerely, Ronald Leeb 5332 Garden Grove Ave. Tarzana, CA 91356 USA E-mail: 72613.2113@compuserve.com (5) ===== Charcot Marie Tooth (CMT) ========== PART (1) ---------- Date: Tue, 3 Jan 1995 12:15:04 EST Sender: L-HCAP List >From: Bill McGarry Subject: Handicap Digest # 3688 Subject: alt.support.muscular dystrophy and CMT >From: ls@mitre.org (Louise Smith) Organization: The MITRE Corporation I'm looking for a forum to exchange information about Charcot Marie Tooth (CMT). CMT is a neurological disorder, unrelated to muscular dystrophy but none the less included in the neuro-muscular diseases the Muscular Dystrophy Association (MDA) Inc. supports. The MDA Inc. provides research and client services for 40 neuro-muscular diseases. These include the various forms of muscular dystrophy, but also non muscular dystrophy related diseases such as CMT and ALS. I'm not sure a forum on neuro- muscular diseases satisfies what I'm looking for. (News groups reach the international community. Is MDA international?) Since I haven't found an appropriate group, I have been considering starting a new news group alt.support.Charcot-Marie-Tooth. If an alternative were available I wouldn't need to create a separate group. I'd rather a separate group but I'm not certain there would be enough message traffic to make a separate group worth while. Kevin M. Rudolph wrote about starting a new news group alt.support.musc-dystrophy. Either the name needs to be changed or the content needs to be clarified. The name implies three different topics: 1) all the forms of muscular dystrophy, 2) an outreach news group for the MDA Inc. client community, or 3) the collection of neurological and muscular diseases that the MDA Inc. covers, but disassociated from MDA Inc. If the intent of this news group is to include other neurological and muscular diseases then the name should be alt.support.neuro-muscular-diseases. Kevin, it is great you have taken the initiative to propose a news group, but first firm up the title and content. ls@mitre.org PART (2) ---------- Subject : Re: Charcot-Marie-Tooth >From : ls@mitre.org (Louise Smith) Organization: The MITRE Corporation In article <34841@handicap.news>, riggsb@FRB.GOV (Betsy Riggs) wrote: > >I tried to send a message to you directly, but I didn't have the address > right so it bounced back (it said that you aren't a typewriter). > >Betsy, > Sorry about the bounced letter. I'm not sure of my own email address. Try ls@mitre.org. (Yes, lcsmith is a typewriter company. But I'm the real thing.) I've been searching the WWW for information on CMT and have found a little. I found a tutorial on genetics at http://www.gdb.org/Dan/DOE/intro.html. I also came across a reference to a Compuserve mailing list or BB for MDA related diseases. Does anyone know any more about this? I don't have Compuserve access. What we need is both a newsgroup for ongoing interactions, and a WWW (with gopher) server for access to other organizations and for an information repository. I'm waiting for more feedback before setting up a newsgroup. Until then, I'm keeping a mailing list of interested people and growing my CMTNet web pages. If you have any ideas, please pass them on. There are three organizations that provide support for CMTers. These are: Charcot-Marie-Tooth Association (Previously called The National Foundation for Peroneal Muscular Atrophy (NFPMA)) Crozer Mills Enterprise Center 601 Upland Avenue Upland, PA 19015 Newsletter: The CMTA Report (previously called The NFPMA Report) Charcot-Marie-Tooth International One Springbank Dr. St. Catharines, Ontario, Canada L2S 2K1 Newsletter: CMT Newsletter Muscular Dystrophy Association Inc. National Headquarters 330 East Sunrise Drive Tucson, AZ 85718-3208 Newsletter: Quest ------ (6) ===== Alzheimer's disease WWW Page ========== Date : Wed, 04 Jan 1995 12:07:21 +1000 >From : David Small Subject: Alzheimer's disease WWW Page To : Maillist Amyloid Alzheimer's disease WWW Page I have constructed a preliminary Alzheimer's disease WWW Page. It should be readable with a day or so. It is in a temporary location, as it is only a trial version. I have had some problems constructing one of the figures. In addition, Netscape seems to read it well, but Mosaic has some problems. Let me know what you think and if you don't like it, let me know what browser you are using. I have Netscape, Cello, WinWeb and Mosaic. This is only an alpha test version! Comments would be appreciated, so that I can put together something a little nicer. The temporary address is http://128.250.224.11/ds/ad.html Let me know what you think! (but please be kind!)#000# === end of als 164 ===