=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #853 (14 May 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. re: Rilutek and Alcohol 2 .. re: free reading material 3 .. ALSA Advocacy Day in Washington, DC 4 .. re: alcohol and rilutek 5 .. re: trying to swallow pills 6 .. Cheryl M. Clark Memorial Golf Outing 7 .. re: professor vs. homeopathic 8 .. Gamma Globulin Treatment Protocol 9 .. Lorenzo's Oil, Omega 3 and 6 10 . Intrathecal cyclosporin prolongs survival of late-stage ALS mice 11 . nursing home care (1) ===== re: Rilutek and Alcohol ========== Date : Sun, 13 May 2001 >From : djdunn@ns.sympatico.ca (Donald Dunn) Subject: Rilutek and Alcohol I am not much of a drinker but a few years ago I heard that it is good for the heart to drink two ounces of alcohol a day. Any more can cause damage, especially to the liver. When I was dx'd last September I asked my neurologist if I could continue with the alcohol. He said yes. I have not had any problems from that, that I know of. I drink it before bedtime so don't worry about driving during the day. The Rilutek does make me sleepy but not to a bad degree. I enjoy any naps I can get during the day. -- Cheers Don Get high and stay high (Glider Pilot motto) (2) ===== re: free reading material ========== >From : CheriNQ@aol.com Date : Sun, 13 May 2001 Subject: Re: >Sometime ago a subscriber to the digest mentioned a website where free >reading material could be found, does anyone know where? Andrew - some of these are free and some are not but I wanted to include the whole list for you and others. Books Online Online Books - http://digital.library.upenn.edu/books/ Project Guttenburg - http://promo.net/pg/ Early English Books Online - http://wwwlib.umi.com/eebo Books ONLINE - http://www.booksonline.com/ Borders Online - http://www.borders.com/ Bibliomania - http://www.bibliomania.com/ Napster - http://www.napster.com/ (for as long as it continues) Books On Tape Books on Tape - http://www.booksontape.com/ Recording for Blind and Dyslexic (we ALS folks also qualify for services) - http://www.rfbd.org/ Library of Congress Service (ALS folks qualify) - http://www.loc.gov/nls/ Have fun! Cher (3) ===== ALSA Advocacy Day in Washington, DC ========== Date : Sun, 13 May 2001 >From : MHarrold Subject: Re: Dear PALS, CALS, GALS and GUYS: Maybe many of you know that next week is the National ALS organization Advocacy Day in Washington DC. The ALSA Margate Support group is sponsoring my trip with a few other willing members. To prepare for meeting our congressmen and senators, I have been collecting letters from group members to take with me. I ask all who are affected by this disease to also write letters and forward them with your local ALSA group (if they are going) or mail them directly to Washington. This is our one shot this year to express ourselves in a coordinated fashion. I believe a strong showing from all of us will have a substantial impact. Below is the email correspondence with an ALSA national representative. It is actually his idea to have letters from other members that can't attend. Read it to get an idea of what to do. Essentially, everyone of us has a unique message to tell -- how ALS has affected them - patients caregivers, spouses, family members, etc. We must demand more funding for ALS victims from the elected officials. Raising only private funds keeps our problem just that - private. Did you know that AIDS funding last year was $4.0 billion, almost 200 times more than our drop in the bucket $20 million? Why do you reckon that is? I believe it's because they bitched 200X louder than ALS victims. Now it's our turn to bitch! Don't wait to do this. Our Florida state ALSA members will be there next Thursday. Make your elected officials understand that we've lost enough victims. Do you know that every 12 years we lose more Americans to ALS than the Viet Nam war? How many more losing wars do we have to fight alone, with no government support. Now is our chance to make some noise and make a difference. We owe it to next years 5,000 newly diagnosed victims. Read this message to get the flavor of the job. My previous posted message to the Digest tells how to find your congressman's address, phone numbers, etc. Good luck and God Bless us all, Mike Harrold (here is my the correspondence with Margate ALS members )================ Dear SFL ALS Members: At our last meeting, some members had asked me to recirculate this email asking all of us to contribute a letter so we can hand deliver them to Washington. To date, I've received only a note from Isaac. We all have a different message that needs to be relayed to our elected officials. I am the rookie to the cause, you all are the pros. You have much more experience in battling this war than I have yet to imagine. We still have 1 week left to prepare something. In the original email, I asked for a picture of you to attach to the letter. This way, you can put a face to the words. (The following text is an excerpted message sent to SFL ALS members on April 26th:) I have requested information from ALSA regarding the upcoming ALS Advocacy Day that a few of us will attend. They have suggested the members that are going take photos and letters from the members that are not. This is everyone's chance to be heard and seen. Let's put together a package that will get some attention. Write your letter and find a recent picture - or have one made and blown up to 8X10. Ensure your letters include the following: "... it is important to tell your story of how horrific ALS is and how it has impacted your life, your family's life and those of your co-workers." We have time to do a decent job which should get some attention. Think "Marketing 101". (As a last thought, if you make the effort to generate a letter, make a copy and address it each - President Bush (1 each to Mr. & Mrs.) and VP Dick Cheney (Mr. & Mrs. as well.) Now, like the NIKE commercial says - "Just Do It". Mike Harrold (4) ===== re: alcohol and rilutek ========== >From : JBull95961@aol.com Date : Sun, 13 May 2001 Subject: Re: Side effects >Can my mother consume alcohol while taking this drug? I'm talking simply >about a glass of wine with supper, or a toast with champagne at an >anniversary party. For what it is worth I have been taking rilutek for four years. I have two beers almost every evening and have not experienced any side effects except wanting a third. If your mother has no other health problems that would dictate otherwise, give her the wine. She will know when it is no longer wise to consume alcohol. Common sense has to come into play here, let her try it and watch for adverse effects. ALS seems to effect everyone different. Also keep in mind I'm no medical expert, just someone who enjoys his beer and has first hand knowledge of other PALS who do also. Jesse Bullock (5) ===== re: trying to swallow pills ========== Date : Sun, 13 May 2001 >From : Ian Stewart Subject: Re: Trying to swallow pills Dearest Soapflowers, I have a PEG tube so all foods and meds must be ground and mixed with water before they are administered. We use an electric coffee grinder which makes it quick and easy to break up the meds. Coenzyme Q-10 or vitamin E are oil based and gooey so they are cut with a knife and mixed with food. We sometimes use an old fashioned mortor and pestle from Cost-Plus, all the tablets can be crushed and ground and the soft caps added then water to make a slurry to pour in my tube. Ian Stewart >"I have always had a "gag" complex when trying to swallow pills. I am >wondering what others use if they crush vitamins and supplements. >Thanks." (6) ===== Cheryl M. Clark Memorial Golf Outing ========== Date : Wed, 09 May 2001 >From : Les Turner ALS Foundation Subject: Cheryl M. Clark Memorial Golf Outing - June 11, 2001 Need a reason to golf on a Monday? Heres one help researchers take a swing at finding a cure for ALS (amyotrophic lateral sclerosis), better known as Lou Gehrig's, disease on Monday, June 11 at Chalet Hills Golf Club in Cary, Ill. The event is organized by Jerry Clark and his family in memory of his wife Cheryl, who died of ALS in January 2001. Proceeds from the outing will benefit the Les Turner ALS Foundation. The Cheryl M. Clark Memorial Golf Outing will begin with a continental breakfast at 7:00 a.m. with an 8:00 a.m. tee off for a game of four- person team scramble. The event will conclude with a BBQ lunch and awards ceremony at 1:00 p.m. Golfers also have the opportunity to win a 2001 Chrysler PT Cruiser, courtesy of Crystal Lake Chrysler, if they get a hole-in-one on the chosen hole. A fee of $150 per player or $600 per foursome includes continental breakfast, golf, cart, first, second and third-place team prizes and BBQ lunch. Corporate or individual sponsorship of a hole is available for $1,000. Space is limited, please call (847) 747-3102 or visit the Clark Family ALS Initiative web site at http://www.docnzok.com/cff/golf.htm . -- Les Turner ALS Foundation 8142 N. Lawndale Avenue Skokie, IL 60076-3322 Phone: 847-679-3311 Fax: 847-679-9109 www.lesturnerals.org (7) ===== re: professor vs. homeopathic ========== >From : "Bill Millington" Subject: Re: : professor vs. homeopathic Date : Mon, 7 May 2001 I never thought I'd respond to WSampsons' mutterings but ENOUGH IS ENOUGH ALREADY SAMPSON. Just because things don't come from your medical books simply does not give you the authority to demean them. Keep in mind Sampson that the vast majority of your so called gospels of medical literature were considered quackery first too. Herbal medicine has been around alot longer than our modern methods. Modern is actually an alternative to traditional medicine if you really THINK about it. I personaly feel it is going to take a combined effort to rid society of neurological disorders completely so the sooner your type falls off the pedestals your on the sooner society can benefit. "It could and will happen" Keep smiling one and all, Bill (8) ===== Gamma Globulin Treatment Protocol ========== >From : "Harry Gould" Subject: Gamma Globulin Treatment Protocol Date : Thu, 3 May 2001 Good news for those who want to try the Gamma Globulin Treatment in the states. I have heard from other patients that ALS-TDF now has the ITIG protocol ready. It was written in cooperation with Dr. Moreira. Patients interested in the GG treatment should read both the ALS-TDF's statement regarding their investigation of the GG treatment and their section of FAQ's on the GG Treatment. When approaching a doctor to administer the treatment, you should have print outs of both of these papers along with my original story, "A New and Effective Treatment for ALS", which was posted on this website on March 7. Approach a doctor with these documents and explain to him that he can obtain the complete protocol by emailing bjauss@als-tdf.org for more info." The protocol is intended for distribution to medical professionals only and is not intended for distribution to patients or caregivers. ALS-TDF Website http://www.als-tdf.org/index.htm ALS-TDF's statement regarding the Gamma Globulin Treatment http://www.als-tdf.org/igg.htm ALS-TDF's FAQ's on the Gamma Globulin Treatment http://www.als-tdf.org/itiggqa.htm (9) ===== Lorenzo's Oil, Omega 3 and 6 ========== >From : "Teri-Lee Hawkins" Subject: Lorenzo's Oil, Omega 3 and 6 Date : Wed, 2 May 2001 I am a caregiver to a very special lady who is 36 and has been suffering with ALS for almost 6 years, she has a little girl who turned 5 in Jan. It is now 2 AM and I am sitting by her bedside while she is getting a good nights rest. My heart goes out to all of you who are suffering with ALS or are seeing family and friends suffering with this devestating disease. I came across some materiel which I hope will be of help to you who are searching for ways to stop and possibly combat this disease. Benny Hinn, a healing minister with a TV program by the same name, has several times interviewed a lady called Maureen Kennedy Salaman. She has for over 30 years worked closely with researchers and physicians versed in nutrition. Her book "All your health Questions answered" ISBN 0-913087-21-1, is a manual of over 1000 pages. In it she mentions Lorenzo's Oil. If you have not yet seen the movie "Lorenzo's Oil", a true story made movie and starring Susan Sarandon and Nick Nolte, released in 1992, I strongly urge you to see it. It is about parents fight for their son's life and a cure for ALD, and they found it in natural sources. Now kids all over the world are being saved because of their own research. ALD destroys the myeling sheeths. It is also being tried and used in similar diceases. Lorenzo's Oil is a formula of omega-6 and omega-3 oils, made from Olive Oil and Rapeseed oil. Lorenzo's Oil can be obtained from Scientific Hospital Supploess, 38 Queensland St., Liverpool, L73JG, England, 011-44151-228-1992 and can be obtained by your physician. I would like to quote from chapter on ALS, p.677: "A Canadian physician using intravenous vitamin C for the treatment of degenerative diseases inspired C.A. Douglas Ringrose, MD, formerly of The Linus Pauling Institute of Science and Medicine in Palo Alto, California, and now practicing out of Edmonton, Alberta, Canada, to develop his protocol. I talked to him personally and he has successfully fought his own battle with Lou Gherig's disease, which he has had now for 14 years. He told me his righht hand and forearm were paralyzed and now they are "stronger than before". The book tells what should be eliminated from the diet and the doctor's protocol an "fortified ascorbic chelation therapy". He says he has successfully used this protocol also for Parkinson's, Parkinsonism, Alzheimer's and MS. Your physician may reach Dr. Ringrose at (403)484-8401. My friend was aware of this a couple of years ago and asked her physisian to help her try this therapy but her physisian refused. Maybe it is time to look into this again. Please let us know if this info proves helpful or if you have any experiences with any of these therapies. Anne Christensen. (10) ===== Intrathecal cyclosporin prolongs survival of late-stage ALS mice ========== Date : Wed, 2 May 2001 >From : Will Hubben Subject: Intrathecal cyclosporin prolongs survival of late-stage ALS mice Intrathecal cyclosporin prolongs survival of late-stage ALS mice. Brain Res 2001 Mar 16;894(2):327-31 (ISSN: 0006-8993) Keep M; Elmer E; Fong KS; Csiszar K Laboratory of Matrix Pathobiology, Pacific Biomedical Research Center, University of Hawaii, 1960 East-West Road, 96822, Honolulu, HI, USA. Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease characterized by upper and lower motor neuron death with ascending paralysis ... In a transgenic mouse model of ALS (SOD1-G93A) weakness appears at 3 months of age, and because of progressive paralysis leads to death by 5 months. Cyclosporin A (CsA) is well known, for its extracerebral effect, as an immunosuppressant in organ transplantation. When able to access the brain, CsA is an effective neuroprotective agent mainly due to its protection of mitochondria through inhibition of the mitochondrial permeability transition. CsA does not cross the intact blood-brain barrier and was in the present study delivered to the brain through an infusion into the lateral cerebral ventricle. Injections started at the onset of late disease when weakness of the hindlimbs was apparent. CsA treatment prolonged the survival of ALS transgenic mice as compared to vehicle-treated controls. This finding implicates mitochondrial function in ALS and may have significance for human disease. Language: English MEDLINE Indexing Date: 200103 Publication Type: Journal Article PreMedline Identifier: 0011251210 Will Hubben whubben@earthlink.net http://www.steveholly.com/Will.html (11) ===== nursing home care ========== >From : "Diane" Newsgroups: sci.med.diseases.als Subject : nursing home care Date : Thu, 03 May 2001 If nursing home care is needed, here is a helpful website. http://www.medicare.gov/NHCompare/home.asp This site lists all accredited nursing homes, gives info on size, patients, ratings in most recent survey, and staffing ratios. Results need to be read with consideration for information not given. Examples: There is no quick distiction between skilled care and custodial care facilities which greatly affects the care needed, likelihood of problem prone patients, and staffing levels needed: A facility that has a high % of patients with pressure sores may be one that specializes in caring for cancer patients who are especially vulnerable to them. I found the info on the deficiency rating in the most recent accreditation survey to be especially helpful. It is necessary to compare several nursing homes in the area, however. Some regions of the country have rather lax reviewers (or simply cannot afford to close the few facilities they have!) and give few deficiency ratings. A bad rating in those areas spells really lousy care. Others are really tough and don't hesitate to give out deficiencies so even good homes get some marks against them. The severity of the deficiency is also rated, so that helps separate the not-so-good from the potentially-very-dangerous. Diane === end of alsd 853 ===