=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #850 (08 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Editorial 2 .. A Request for Personal Stories and Letters to Congress 3 .. Alternative Medicine 4 .. How can I help my mom? 5 .. nausea 6 .. re: Communication Devices 7 .. Tahitian Noni Juice? 8 .. Seeking internist in Staten Island vicinity 9 .. re: Omega 972 10 . Japan: current nutritional therapy and the ALS patient (1) ===== Editorial ========== Just so everyone knows, the ALS Digest is a free-of-charge newsletter. And I as editor/publisher/distributor/etc. do not need financial help because it does not cost me anything (except for my time) to create it. Actually, I don't even create it ... as it is created by the wonderful subscribers. However, sometimes people indicate that they want to make a financial contribution as a way of helping the ALS Digest. If people want to do that, they can now contribute to the Carmen Avila Scholarship Foundation. Carmen was my wife, and I started the ALS Digest as a way of trying to save her life. Now that we have lost Carmen, her friends have set up a scholarship fund as a way of remembering her. Carmen was a teacher at Rickards High School. Interested people can help us by contributing to the Carmen Avila Scholarship Fund c/o: Tyler Turkle, Executive Director Leon County Schools' Foundation, Inc. 118 North Monroe Street Tallahassee FL 32399-1700 USA TEL 850-224-2378 FAX 850-222-7281 E-M lcsf@tdo.infi.net URL http://www.lcsf.org Sincerely, Bob Broedel, ALS Digest (2) ===== A request for Personal Stories and Letters to Congress ========== >From : DJayne23@aol.com Date : Mon, 7 May 2001 Subject: A Request for Personal Stories and Letters to Congress Dear Friends, My name is David Jayne. I am 40 and have Lou Gehrig's disease, otherwise known as Amyotrophic Lateral Sclerosis (ALS), a degenerative condition that causes my muscles to atrophy. I live in the community of Rex, 15 miles south of downtown Atlanta, Georgia. In early 1998, I had a tube inserted in my throat and was hooked to a portable ventilator. I use a computerized speech processor to speak and receive my nutrition via a tube permanently inserted in my stomach. My mobility is limited to the ability to twitch three fingers. These medical conditions create an ongoing need for skilled nursing. Having worked prior to the onset of ALS and thus paid into Medicare, I qualify and receive home health services. Like for thousands of other Medicare beneficiaries this assistance literally is necessary for me to continue to live. Home health services have also enabled me to live in my own home and be near those I love most my 2 children, family, friends and church. But the receipt of these services also extracts a price which I believe no law abiding American should ever have to pay: The Medicare homebound rule says that to receive home health services a person can not leave their house except for very limited purposes like going to occasional medical appointments or religious services. This unfairly forces beneficiaries to give up our most precious freedom by making us prisoners in our own homes. This rule was put in place in the early 1970's when most people with significant disabilities were institutionalized or "confined to home" by barriers to health care, education, employment and community living that were far more rampant in society. Thanks to the ADA and advances in health care and technology, those with significant disabilities and chronic illnesses no longer have to be shut ins or shut out of life. No one should be forced to choose between receiving the home health care they need to survive and their right to live freely in their own homes and communities. Toward this end, U.S. Representative Edward Markey has introduced the Homebound Clarification Act of 2001 (HR 1490). Senator Jeffords of Vermont is expected to sponsor similar legislation as well. These measures would eliminate the homebound restriction and free many like me to play an active role in community life while retaining the home care services we need to survive. On May 15th, I will be traveling from Atlanta to Washington DC where I will lobby for the passage of HR 1490. I believe passage of this legislation is critical to affording full, first class citizenship to all Americans with disabilities. If you share my belief, I strongly urge you to write your U.S. Representative and Senators to cosponsor and actively work for the swift enactment of this crucial legislation. While in Washington I will be seeking to meet with the key Members of the Senate and House that are listed below. If you are represented in Congress by any of these individuals please contact them immediately and urge them to meet with me to discuss the importance of HR 1490. Here are the key members of the House and Senate and links to their websites for contact information. If you are a constituent of one of the elected officials listed below please contact them: Senators Chuck Grassley (Iowa) URL: http://www.senate.gov/~grassley Jim Jeffords (Vermont) URL: http://government.aol.com/cgi-bin/aolreturn.pl?link=jeffords. senate.gov&dir=htdocs/mygov Ted Kennedy (Mass) URL: http://www.senate.gov/~kennedy Max Baucus (MT) URL: http://government.aol.com/cgi-bin/aolreturn.pl?link=baucus. senate.gov&dir=htdocs/mygov Olympia Snowe (ME) URL: http://government.aol.com/cgi-bin/aolreturn.pl?link=snowe. senate.gov&dir=htdocs/mygov John Rockefeller (WV) URL: http://government.aol.com/cgi-bin/aolreturn.pl?link=rockefeller. senate.gov&dir=htdocs/mygov Tom Harkin (Iowa) URL: http://government.aol.com/cgi-bin/aolreturn.pl?link=harkin. senate.gov&dir=htdocs/mygov Representatives William Thomas (R-Ca-21st) URL: http://www.house.gov/billthomas Pete Stark ( Ca-13 district) http://www.house.gov/stark/contact.html Bilirakis (Fa-9th District) http://www.house.gov/bilirakis/ Sherrod Brown (Ohio-13th) http://www.house.gov/sherrodbrown/ John Dingell (MI-16th) URL: http://www.house.gov/dingell Charles Rangle (NY-15th) http://www.house.gov/rangel/ John Lewis (Ga-5th) URL: http://www.house.gov/johnlewis When you write, e mail, or call your Senator or Representative, please be sure to share with them in your own words: Why the current homebound rule is both unfair and outdated; How the homebound rule makes people prisoners in their own homes; and, Why allowing Medicare home health beneficiaries the freedom to leave their homes will likely improve their health and/or outlook on life. Finally, I know that many will be attending the annual conferences of the ALS Association or National Council on Independent Living in Washington, DC the same week I am there. I would ask that when you meet with your Members of Congress that you urge them to cosponsor or otherwise support the passage of HR 1490. Thank you in advance for your interest and support. Sincerely, David Jayne, Founder djayne23@aol.com The National Coalition to Amend the Homebound Restriction http://amendhomeboundpolicy.homestead.com/ (3) ===== Alternative Medicine ========== Date : Mon, 07 May 2001 Subject: Alternative Medicine >From : Patrick Griffin Some people see a rose, smell it, and remember it as a beautiful thing. A few people may pass a rose and not notice it or care about it, or even find it to be an impediment to their journey. Others see a rose, grasp the stem, are jabbed with thorns, and remember the rose as a hurtful, dangerous plant. Still other people KNOW the rose: they appreciate its colorful beauty in bud and bloom, are enchanted by its scent, and yet are also wary of its thorny stems and the potential for bee stings. To me, the disciplines that fall under the umbrella of "alternative medicine" are like a rose. Some disciplines actually help, and their effectiveness as compared to "traditional" medical practice has been 'proven' in clinical trials. Acupuncture and chiropractic come to mind. Some disciplines may not demonstrably help, but they do not hurt. At the very least, they may make a patient temporarily feel better. In my view, aromatherapy and use of crystals can be placed in this group. And some disciplines can cause harm to the patient. This may be actual physical harm caused by the "treatment", economic harm caused by exorbitant and unaffordable "treatment, emotional harm resulting from inflated claims and insignificant results, or increased trauma resulting from delaying or avoiding traditional medical care. I believe that KNOWING is the best course to take when considering any treatment, whether "traditional" or "non-traditional". I think it is OK to be skeptical and critical of traditional OR non-traditional treatments that can cause harm. As a patient, that skepticism and critical thought processes lead to informed consent. We, as patients, are in charge of our bodies and the care we receive. We need to know all the facts and opinions, positive and negative, of the treatments we receive, including the intended effects, the side-effects, the demonstrated results, and the costs. With that information, WE decide what to do. Personally, I take advantage of "traditional" Western medicine, even though it cannot cure KD (or ALS). My medical doctors help me manage my blood pressure, cholesterol, aches and pains, infections, and provide surgical intervention if needed. I use "non-traditional" medicine in conjunction with "non-traditional", and I keep my medical doctors informed of that use. I visit a chiropractor regularly, who maintains the health of my spine, reducing my need for muscle relaxants and pain killers, and possibly improving my overall health in addition. I practice accupressure and reflexolgy. I use herbs, vitamins, and other dietary supplements. I meditate and pray. The key is I optimize my health maintenance while minimizing risk. Health is not just the presence or absence of disease. It is a state that permeates one's total existence. Whatever form of treatment one chooses, it is important to know what critics have to say about it. For example, you may not like Dr. Sampson, but you owe it to yourself to consider his ideas, and accept or reject them. To ignore him, or to ignore those in opposition to him, is a failure to gather information. That is a symptom of a closed mind. When your mind is closed, I believe your overall health can only suffer. Patrick Our attitude determines our altitude. (4) ===== How can I help my mom? ========== Date : Mon, 7 May 2001 >From : Jean Chen Subject: How can I help my Mom? My Mom was diagosed having ALS 3yrs ago at age 55. She lives in China and I'm working in US. She is hard-working mother and got this diease before she can enjoy her retirement life. I feel depressed that I can never bring her here and spend time together. How can I help her with this distance. She cannot talk now and I can only write her. I feel guilty and I can't leave for China since I have two young kids here and a job. What can I do for her? Thanks! Jean (5) ===== nausea ========== >From : wendy_long@ny.kirkland.com Date : Tue, 8 May 2001 Subject: NAUSEA Dear Newsletter readers: Please, someone must have an answer to this. My mother, 65 years old, was diagnosed with bulbar onset ALS in Nov. 1999. She had a G-tube installed in Feb. 2000 as she could no longer swallow. Although she has deteriorated very badly over the past two years, at least she had no problems with the tube. One month ago, in April 2001, in the hospital for her second bout of pneumonia, she elected to get a tracheostomy with a "diversion" procedure (in which the trachea is basically blocked off at the top and diverted out the front of the neck like a normal trache, so that anything in the mouth/nose will never go down into the lungs but will instead be diverted into the esophagus. When they did this surgery, they also gave her a new "replacement" G-tube as we were told they should be replaced every couple of years. Since the operation, she has been so nauseated that it is unbelievable. She intermittently vomits her tube feedings, and even when her stomach is empty, she retches and is completely nauseated. It has not let up for weeks. It is terrible. She is at a good teaching hospital and many good specialists of all kinds have seen her. No one can figure out why she is nauseated. She has tried all the anti-nausea drugs available, and none works. Has anyone any idea what is causing this or what to do about it? Wendy Long wendy_long@ny.kirkland.com (6) ===== re: Communication Devices ========== Date : Wed, 25 Apr 2001 Subject: Re: >From : LUANN GRENINGER Re: Communication Devices My mom was dignaosed with ALS on Aug. 28, 2000. Her speech was affected first also. We got the Lightwriter and it was a lifesaver. We got help from our ALS clinic and they referred The Courage Center. They have an assortment of supplies to use free of charge. When the Lightwriter doesn't work and you need a different type of machine all you need to do is call them and they came and replace what you have with a different one that will work for you now. Ask your ALS Clinic or your own doctor if there is a facility or company that does this in your area. Good luck and God Bless all of you. Bunches of love, LuAnn Greninger (7) ===== Tahitian Noni Juice? ========== >From : Dhart510@aol.com Date : Sun, 22 Apr 2001 Subject: Re: Have you heard about Tahitian Noni Juice? It repairs cells. Could it help with ALS cell repair?? (8) ===== Seeking internist in Staten Island vicinity ========== >From : YourAlien@aol.com Date : Tue, 8 May 2001 06:35:00 EDT Subject: ALS notes Could someone recommend an internist in the Staten Island, New York vicinity that my mother, dx'd in 1999 could get check ups? We just moved and I figured that a doctor familiar with ALS would be better for her. Thanks. (9) ===== re: Omega 972 and Topiramate (ALSD816) ========== Date : Wed, 11 Apr 2001 >From : Sue Uteck Subject: re: omega 972 My husband Larry also participated in the omega trial. While we did not find that it improved his day to day functions, it did improve his breathing for the 1st two months and there were no changes as far as lung capacity. Overall, Larry felt "well" the next morning after he received this drug. From a caregiver perspective, there was "definitely" an improvement. He had more energy and did not want to rest. We also have absolutely great days when Larry wanted to walk a distance "50 ft. or more" or movement of a finger or foot that he could not do before. But most importantly, for all of us caregivers, the breathing gave us rest at night and showed that there is indeed hope for this disease. We are now in the process of figuring out how to pay for this, we know this is not the cure and Dr. Ladoulis explained this so eloquently, but we do know, that this is one more step that we need to make in order to have any hope of dealing with this. The absolutely mind boggling thing about Dr. Ledoulis is that he will tell you that he is not certain he knows what he has, he just knows that people are reacting in some way and he will continue to work on it. Regards, Sue Uteck (10) ===== Japan: current nutrition therapy and the ALS patient ========== >From : Dasroster@aol.com Date : Fri, 4 May 2001 Subject: Japan: current nutrition therapy and the ALS patient Rinsho Shinkeigaku 2000 Nov;40(11):1083-9 Related Articles, Books [A survey of current nutrition therapy for the ALS patients in Japanese national sanatoriums]. [Article in Japanese] Seki H, Kameya T, Kimura I. Department of Neurology, National Yamagata Hospital. To evaluate the current nutrition therapy for the patients of amyotrophic lateral sclerosis (ALS) in Japan, we sent questionnaires to 53 Japanese national sanatoriums (hospitals) and were able to collect replies from 42 institutes. In these replies, information on 466 patients (262 inpatients and 204 outpatients) was reported, accounting for about 10% of all Japanese ALS patients. Patients who ate orally were more frequent (p < 0.001, chi 2 test) in the outpatients (76.0%) than in the inpatients (39.7%). When the subjects were limited to non-orally nourished cases, gastrostomy was more frequently performed (p < 0.05, chi 2 test) in the outpatients (49%) than in the inpatients (29.1%), but no significant differences were observed between the above two groups as to the quantity of daily caloric intake; the mode was 1000-1200 Cal. About a quarter of non-orally nourished patients received supplemental sodium chloride, and fewer were supplemented copper and/or zinc. The consent of the patients as well as the clinical findings weighed heavily in the determination of the feeding route. Most physicians were disinclined to encourage tube feeding in the early stage of dysphagia, but were supportive of the operation of percutaneous endoscopic gastrostomy when non-oral nutrition therapy became necessary. Although the efficacy of vitamins for ALS has not been proved, 45 of 58 physicians agreed to subscribe vitamins to their patients, especially vitamin B12, E and C. PMID: 11332187 [PubMed - in process] === end of alsd 850 ===