Date: Tue, 8 Aug 95 02:38:21 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD206 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#206, 07 August 1995) == == == == ------ 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 == == 880+ 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 2 .. re: many questions from Brazil 3 .. re: Neurofilament Mutations 4 .. re: Help with diagnosis 5 .. ALS - Incontinence 6 .. Alcohol and ALS 7 .. macrobiotic diet question 8 .. motor neurone disease & computers 9 .. Les Turner ALS Foundation 10 . Dilantin & ALS 11 . Drug - BDNF 12 . lucked into a great idea 13 . a question 14 . spasticity 15 . Phase III BDNF Trial 16 . Disability URL's - edited list 17 . Clinical Trials Homepage 18 . Lou Gehrig's Disease (1) ===== Editorial ========== I will be traveling for the next ten days or so. This means that there will not be an ALS Digest next week. I will be on-line once in a while as a way of managing new subscribers, etc. but serious work will need to wait until I return to Tallahassee. As always, I thank all of you for being a part of our on-line ALS Interest Group. rgds,bro (2) ===== re: many questions from Brazil ========== Date : Sun, 06 Aug 95 11:25:01 -0400 >From : "Dr. Kenneth Fischbeck" Subject: RE: many questions from Brazil >Recently, my wife and I have faced a difficult decision. Her father died >from ALS ten years ago (he was about fifty). Now, we are thinking about >having children and, when we went to a geneticist, she told us that there >is about a 50% chance that any one of our children will be affected -- as >well as a high chance that my wife is affected, too. > >Since we as yet have almost no information on this disease, I would like to >know if someone can answer the following questions (whether to the Digest >or by private e-mail, it doesn't matter): > >1. Is there more than one type of ALS? If so, how can they be > differentiated? > >2. Can ALS be genetically transmitted? If so, what are the > chances of transmitting it to a descendent? > >3. Is there any way to determine if one is affected with ALS > before its onset? Is there any precocious treatment? Only about 5-10% of ALS is familial. Unless there are multiple affected family members, the risk of transmission to a descendant is very low. In some familial cases, there are identifiable mutations in the gene for superoxide dismutase 1 (SOD1). In those families, there is a potential for pre-symptomatic diagnosis; however, there is no pre-symptomatic treatment that has been shown to be effective. K. Fischbeck, M.D. Neurology, Univ. Pennsylvania Philadelphia, PA USA (3) ===== re: Neurofilament Mutations ========== Date : Sun, 06 Aug 95 11:11:01 -0400 >From : "Dr. Kenneth Fischbeck" To : spgtbjg@ucl.ac.uk Cc : bro@huey.met.fsu.edu Subject: RE: Neurofilament Mutations >Is there any work going on to find point mutations within the neurofilament >genes of ALS patients? The following paper deals with this question: Figlewicz DA, et al. Variants of the heavy neurofilament subunit are associated with the development of amyotrophic lateral sclerosis. Human Molecular Genetics. 3(10):1757-61, 1994 Oct. K. Fischbeck, M.D. Neurology, Univ. Pennsylvania Philadelphia, PA USA (4) ===== re: Help with diagnosis ========== >From : "Lee Gaither" Date : Tue, 1 Aug 1995 11:32:08 EDT Subject: Re: ALS Thank you so much for sending the information. I was stunned to seen the query from Dave Putman who lives in Centre Hall, PA. This is were I am from and his father's symptoms are occuring exactly as my father's did. The doctors took two years to diagnose the disease. It even started with the same sequence ... slurred speech following one or two drinks, progressing to overall slurred speech, problems with the leg muscles, difficulty swallowing, and night cramps. The constant muscle twitching started after a particularly strenous day of physical work. Here is my query. Did Mr. Putman serve in the military during the end of the Korean War? Is he in his 60's? Apparently they have discovered a large number of cases of ALS occuring in veterans who served during the end of the Korean War. There was a food product put into the bread made by the locals on an island where many were stationed. I am sure you have discussed this. Thank you for any information you can provide. Lee Gaither Publicity/Rights Manager University of South Carolina Press 937 Assembly St., Carolina Plaza, 8th flr. Columbia, SC 29208 Voice: 803/777-2021 lee@uscpress.scarolina.edu (5) ===== ALS - Incontinence ========== Date : Sun, 30 Jul 1995 22:51:32 -0400 >From : 76001.3670@compuserve.com Subject: ALS - Incontinence What nutritional supplements are useful for ALS sufferers? Glad to hear someone is creating a support group for ALS. My father has suffered from ALS, and has become incontinent. Moreover it's been difficult to find the supplies, and embarrassing to buy them. There's a mail order company I've used that specializes in incontinent care called Ivy Hill Products. You can order by calling their number (800) 489- 3353. They've been reliable, responsive, and have the lowest prices I've seen. Feel free to share this resource with fellow caregivers. Warmest regards, Joel (6) ===== Alcohol and ALS ========== Date : Sat, 5 Aug 1995 06:32:11 -0400 >From : TTorgerson@aol.com Subject: Alcohol and ALS I was diagnosed with 80% chance of als a few months ago. I drink a lot of beer for relief of pain and psych relief (3.2 beer only). How does that relate to als? Told it possibly makes it worse but for some reason I am not convinced. For second question my left ankle and left fingers are now swelled. Can that be a byproduct of als? Basically hand and walking (due to left areas) are shot. Seeing if I can get electric wheelchair, I have fallen one too many times. Moved all cpu and ham radio equipment upstairs in living room for easy access. Hardly can get get down the 13 steps to downstairs floor. Never was a good cpu typer but now use right hand almost exclusively, the left hand rests on shift key only - with keyboard on lap. As a cpu book writer this is basic operating position. Started using Neurotin a few weeks ago and helps sleep and appetite a bit. Glad state pays for it ($120/month). Enough I guess Chow, AOL ADDRESS - ttorgerson@aol.com Tom Torgerson, Mn. (7) ===== macrobiotic diet question ========== Date : Sat, 5 Aug 1995 13:35:19 -0400 >From : JanF@aol.com Subject: macrobiotic diet question A question for the ALS Interest Group: My sister-in-law would like me to ask all of you about your experiences and feelings about a macrobiotic diet for an ALS patient. Her father was just diagnosed a couple of months ago. He has already lost a lot of weight due to a "celery and water" diet that someone put him on. Now he is seeing a macrobiotic doctor who wants him to eat only seaweed and rice as a sort of "cleansing diet." We are concerned that this is not a balanced diet. He is already underweight, and we also feel that he will be losing muscle mass that he really needs. Right now, he is still walking and working, but he has already lost muscle strength and has tremors. His ALS doctor (not the macrobiotic doctor) says that his entire body has already been affected by the ALS. He has been selected to be in an upcoming rilutek trial. Please e-mail any pertinent info about the macrobiotic diet to me, and I will forward it to my sister-in-law, as she isn't on the net: janf@aol.com (8) ===== motor neuron disease & computers ========== Date : Mon, 31 Jul 1995 20:36:55 -0500 >From : anpeters@facstaff.wisc.edu (Andrew N. Pterson) Subject: motor neuron disease & computers My father in law has als and has been inquiring about "hands free" computers. Do you have any source of where I might find a foot or chin driven mouse? Thanks (9) ===== Les Turner ALS Foundation ========== Date : 04 Aug 95 17:17:45 EDT >From : "ARRIFLEX CORP." <72052.175@compuserve.com> Subject: Possible contribution to ALS Digest Following is a Grapevine column note from the August 4th,1995 issue of "Goldmine", a publication largely dedicated to record and CD collectors. Yours truly, Russell Guenther ----Mammoth Music Mart Looking for Collectible Donations---- "Goldmine's" pages will be the site of a special mail-order auction of music collectibles to be held in conjunction with the Mammoth Music and Record Mart with proceeds benefiting the Les Turner ALS Foundation. The Mammoth Music and Record Mart is a 10-day fund raising event held annually for the past 18 years under a circus tent at Old Orchard Plaza in Skokie, Illinois. More than 800,000 records, CDs, musical instruments and memorabilia are for sale during the event, all donated by individuals and corporations. All money raised goes toward research into Lou Gehrig's disease, also known as ALS. Les Turner, Founder of Mammoth Music and Record Mart and an avid record collector, died of the illness just prior to the first MMM in 1977. Prior to this year's sale, which will take place September 28th through October 8th , a mail-order auction will take place via a full page ad in the September 15th issue of "Goldmine". We are seeking donations for inclusion in this sale. If you have items which you are willing to donate, please contact Sarah Bachman at Mammoth Music Mart before August 10. She can be reached at 708-674-MART or via fax at 708-679-9109. Those living in the Chicago area can donate items in person at MMM headquarters at 3325 Main Street, Skokie. "Goldmine" magazine can be visited on CompuServe in the American Oldies Diner Forum. Type "go oldies" at any prompt. The phone Number for "Goldmine" is 715-445-2214 if you want more information on the auction. (10) ===== Dilantin & ALS ========== Date : 05 Aug 95 22:50:13 EDT >From : WILLARD TODNEM <76264.536@compuserve.com> Subject: Dilantin & ALS I received and read two books from the Health Foundation in New York. They were about Dilantin whose generic name is phenytoin (PHT). It is approved by the FDA for treatment of Epilepsy and has been so used for decades .. According to their information it is effective in treating a wide variety of other afflictions resulting from an out of control nervous system. Side effects are rare and mild. They were not aware of anyone trying it for ALS. I would very much like to hear from anyone who has any knowledge of it being used to treat ALS Willard Todnem 76264,536@Compuserve.com (11) ===== Drug - BDNF ========== Date : Sun, 6 Aug 95 13:13:30 EST >From : Bob Gaetano Subject: Drug - BDNF Does anyone have any information on the Drug BDNF in the treatment of ALS? Any information on this subject would be greatly appreciated. Please reply to the email address listed below or in the ALS Digest. Thank you. Sincerely, Bob Gaetano. "All setbacks are temporary!" rgaetano@ocmvm.cnyric.org (12) ===== lucked into a great idea ========== Date : 7 Aug 1995 16:56:53 -0700 >From : "Robin Gardner-Boeing" : Subject: lucked onto a great idea My husband had a g-tube put in last Monday, and came home on Tuesday after we both spent the night in the hospital. It became apparent very quickly that we needed a good way for Pete to let us know he needed something. That afternoon, I called our local Radio Shack store and told the fellow there that I needed something just like a Star Trek Next Generations communicator, so that he could just press a button, and a tone would sound that would get my attention. It had to be cordless and very easy to use. It turned out that Radio Shack makes a cordless remote doorbell which is ideal for this use, and costs (at least here) less than $25.00. There are two units: the doorbell and the receiver. The receiver uses three AA batteries, and is the size of a pack of cigarettes. The doorbell is about as tall as a pack of 100 size cigarettes, and half as wide, easy to fit in a shirt pocket or on the bed next to a person. It takes a 9 volt battery. Thus far it has been great. He takes it into the bathroom, and lets me know when he needs help. He can sleep with the bedroom door closed so the kids don't bother him (we have little ones who just can't understand what it means to be quiet). He can have it with him at all times in case of emergency. It has about a 50 foot range, and so far been just great. The only drawback is that the adhesive velcro didn't work on his wheelchair control. I will try hot-gluing the velcro next, so that his unit can either stay on the wheelchair for when he is working or moving around, or removed to put on the bed or in a pocket. Other than that, it has worked wonderfully, and our visiting nurse was really impressed and planned to recommend it to other patients she has. Regards, Robin Gardner Robin_Gardner-Boeing@cl_63smtp_gw.chinalake.navy.mil Pete_Gardner@cl_63smtp_gw.chinalake.navy.mil (13) ===== a question ========== Date : Mon, 7 Aug 1995 18:51:41 -0500 (CDT) >From : "H. Fryauf-Bertschy" Subject: a question I have a question for people doing ALS research. Why does the U.S. have roughly 33% (23,000 / 70,000) of all reported cases of ALS when it only has 6% (250 mil / 4.5 bil) of the world's population? I understand that "reported" is a key word, but does it explain the 27% difference? Thanks, Mike Bertschy (14) ===== spasticity ========== Date : Fri, 28 Jul 1995 15:37:47 EDT >From : UKRY13A@prodigy.com (MR JOSEPH L SNYDER) Subject: spasticity When I get up in the morning, I have extreme total body stiffening and shaking. HAS ANYONE FOUND A TREATMENT FOR THIS ALS SYMPTOM ? The only treatment I have tried is baclafen, which helps some, but weakens me during the day. HELP, ANY SUGGESTIONS WELCOME. JOE LOUISVILLE USA (15) ===== Phase 111 DBNF Trial ========== Date : Sat, 29 Jul 1995 12:46:17 -0400 >From : SkyGoetze@aol.com Subject: Phase 111 BDNF Trial Bob: Thanks to your ALS Digest #200, Contents of Item #1, Rick was the first PAL to be accepted on the trial and the second one to be injected. According to the Center for Neurological Study in San Diego, there are still openings; and they will be interviewing for approx. 3 months. The people working at CNS are wonderful. One of the main things they are looking for is the ability to score at least 60 or higher on the pulmonary scale. The web site is: http://www2.connectnet.com/users/cns E-Mail Address: cns@connectnet.com A Univ. of San Diego student, Jay Meyer, set CNS up on-line and was excited at the response. I thank you so much for keeping us informed and giving us the tools to help ourselves... Also, I make copies of your Digest and send them to an ALS Support Group in Northern Wisconsin; in fact, the man I send them to, Lew Neff, was named ALS Volunteer of the Year by ALSA. He would love to be on-line, but due to his disabilities hasn't been able to either afford or find the technology to do so. Anyway, I share all info with him and another friend here in Reno who doesn't have a modem. We all take our hats off to you and your vast efforts. Fondly, Sandy (16) ===== Disability URL's-edited list ========== Listname: "Muscular Dystrophy - Patients, Family, & Friends" : >From : Virginia Ward Subject : Disability URL's - edited list Date : Thu, 20 Jul 95 14:13:53 MDT To all of you who asked: This is the edited listed of Disability URL's. I took Bluegrass and Dilbert out. You are welcome to use, forward publish this information if you wish. I got it off the World Wide Web using Mosaic. You can also use Netscape or other WWW viewers. Maybe Frank can tell you how to get access to them. I have mine through work. Ginny _____________________________________________ REF="http://www.eskimo.com/~jlubin/disabled.html" disABILITY Resources on the Internet REF="http://synapse.uah.ualberta.ca/aan/00040000.htm" Neuromuscular Disease (AAN Continuum) -- Neuromuscular Disease: Table of Contents REF="http://synapse.uah.ualberta.ca/aan/00b00000.htm" AAN Home Page -- Home Page REF="http://grunt.berkeley.edu/cci/cci.html" Canine Companions for Independence REF="http://lcweb.loc.gov/nls/nls.html" National Library Service for the Blind and Physically Handicapped REF="http://www.nas.com/downsyn/"> Down Syndrome WWW Page REF="gopher://marvel.loc.gov/11/loc/nls" National Library Service for Blind/Physically Handicapped REF="http://www.traveller.com/dymedias/"> Better Life On-Line Catalog REF="http://www.portal.com/~cbntmkr/php.html"> Parents Helping Parents REF="http://www.ssa.gov/SSA_Home.html"> SSA Home Page REF="http://www.portal.com/~cbntmkr/whosphp.html"> Who Is PHP? REF="gopher://val-dor.cc.buffalo.edu/11/.naric/.abledata/.factsheets" ABLEdata Fact Sheets on assisitive devices REF="http://www.yahoo.com/Society_and_Culture/Disabilities/" Yahoo - Society and Culture:Disabilities REF="http://turnpike.net/metro/B/bernstp/chadd544.htm" CH.A.D.D. of Bay County, Chapter 544, Attention Deficit Disorder Information REF="http://www.pavilion.co.uk/CommonRoom/DisabilitiesAccess/" Welcome to Disabilities Access REF="http://www.icdi.wvu.edu/Others.htm"> Disability Resources REF="http://www.nas.com/downsyn/listserv.html"> List of Lists REF="gopher://trace.waisman.wisc.edu/1"> Trace Center: Disability and Computer Access Information REF="http://www.parentsplace.com/"> ParentsPlace.Com Home Page (17) ===== Clinical Trial Homepage ========== Date : Fri, 28 Jul 1995 16:05:46 -0400 >From : Richard Harbaugh Subject: Clinical Trial Homepage Thank you for your interest in the Sterling Clinical Resources home page. We maintain a list of clinical trials for people looking to participate in studies for new drugs or devices. Our list tends to include rare chronic disorders, however, we will list almost any Phase II or Phase III study. Although our home page is relative new a there is a great deal of interest. We add new listing by the 5th of each month and have at least ten more we will add in August. People are able to access our home page at no charge. We receive posting are sent to us by clinical trial sponsors, contract research organizations (CROs) and individual investigational sites. We ask that posting be provided in our standard format and be approved by each institution's IRB. In some cases we have posted IRB approved verbiage that is in a somewhat different format from our own. We will list the name of the investigator and a telephone number or mailing address. Our number toll free number (800) 393-9866 is also listed as a source of information if the investigators do not want their names and numbers listed. Our home page is http://www.primenet.com/~iwpp/sterling.html The Sterling home page is one of the many methods we use to recruit study participants for clinical trials. The home page is maintained as part of our effort to gain exposure for the company. Sterling Clinical Resources is a company that recruits study participants for clinical trials and works with them to help overcome obstacles which would cause them to drop out of a study. Our clients are mostly drug and device companies that are attempt- ing to collect data on their way to FDA approval. If you would like more information please contact me by e-mail or voice. We are in Tustin, California. Our format for postings is: Sterling Clinical Resources Home Information Sheet Clinical Trial Name Treatment Objective Basic Inclusion Criteria Basic Exclusion Criteria Study Regimen Cities and States of Investigational Sites How to get More Information Best regards, Richard Harbaugh ______________________________________________________________________ Distributed by: The Clinical Trials Mailing List Paul Bleicher, MD PhD (Moderator) Voice: 508 798-6900 E-Mail: bleicher@world.std.com Send Submissions to: clinical_trials@world.std.com ALL POSTINGS MUST HAVE YOUR REAL NAME AND AFFILIATION Subscribe by sending a message to: majordomo@world.std.com body of message: subscribe clinical_trials your@email.addr Unsubscribe by sending a message to: majordomo@world.std.com body of message: unsubscribe clinical_trials your@email.addr ______________________________________________________________________ (18) ===== Lou Gehrig's Disease ========== TITLE : Lou Gehrig's disease BYLINE: Dr. Frank Foley DATE : 07/06/95 SOURCE: The Toronto Star This progressive and chronic muscle disease destroys brain and spinal cord nerve cells to the point where movement becomes difficult. Amyotrophic lateral sclerosis (ALS) is commonly known as Lou Gehrig's disease after the famous 1930s baseball player who suffered from it. The cause is not known, but 5 to 10 per cent of cases may be hereditary. Environmental toxins and immune system problems may contribute. Who is at risk? * Persons over age 45. * Men (1.6 times more common than in women). * Anyone with a family history of ALS. * Persons exposed to heavy metals like lead and mercury. Early symptoms: Mild leg or hand weakness, stiffness, fatigue. Later: Muscle and weight loss, problems walking, swallowing, talking and breathing, cramps, constipation. Intellect unaffected. Treatment * Since there is no cure, a team approach is best: physiotherapy, occupational therapy, speech therapy, psychotherapy, neurological assessment. * Drugs can relieve pain, stiffness and cramps. * A proper diet maintains body weight and self-esteem. * Local ALS societies provide support and advice. ALS Society of Canada: (416) 362-0269. Persons with ALS usually live about four years after diagnosis; 10 per cent live more than 10 years, and some more than 25 years. ------- Dr. Frank Foley is a family physician and psychotherapist. We regret letters cannot be answered personally, but they will influence future columns. LifeLine is a general guide; always consult your doctor. === end of als 206 ===