=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #848 (05 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Reversible MND 3 .. re: professor vs. homeopathic? (ALSD845) 4 .. ALS information in Spanish language needed 5 .. Gateways to Death Identified 6 .. The ice flow sounds better 7 .. Help request from Colombia (1) ===== Editorial ========== This is a note to AOL users. If you are using AOL to receive the ALS Digest, and you are receiving all issues that are being sent, and if you are willing to help AOL users who are having problems receiving the ALS Digest ... please contact me. ( bro@met.fsu.edu Bob Broedel). I will send you some e-mail addresses of AOL users who are needing help. (2) ===== Reversible MND ========== Date : Fri, 4 May 2001 >From : Will Hubben Subject: Reversible MND - PALS read!! One of these is a bit older, but they're two of my favorite abstracts. PALS should keep hope alive. -Will ----------------------------------------------------- Rinsho Shinkeigaku 2000 Nov;40(11):1090-5 A patient with motor neuron syndrome clinically similar to amyotrophic lateral sclerosis, presenting spontaneous recovery. [Article in Japanese] Miyoshi K, Ohyagi Y, Amano T, Inoue I, Miyoshi S, Tsuji S, Yamada T, Kira J. Department of Neurology, Neurological Institute, Graduate School of Medical Sciences, Kyushu University. We report a patient with motor neuron syndrome similar to amyotrophic lateral sclerosis (ALS) and with spontaneous recovery. At the age 40, the woman developed progressive muscular weakness, atrophy and fasciculation in extremities. She also noted a dyspnea, tongue atrophy and dysphagia. A neurological examination 6 months after onset revealed i) a tongue atrophy and fasciculation, ii) diffuse muscule weakness and atrophy in face, neck and extremities, and iii) marked hyperreflexia in the four limbs and bilateral Babinski reflex, but iv) neither sensory disturbance nor ophthalmoplegia. Electromyogram (EMG) detected such denervation potentials as fibrillation potentials, fasciculation potentials, positive sharp waves and polyphasic or giant MUPs diffusely in the limb muscles. Peripheral nerve conduction study detected neither conduction block nor delay. Thus, she was diagnosed as suffering from ALS. However, since approximate 1 year after onset, her muscle weakness has gradually been getting better. Simultaneously, the dyspnea and dysphagia gradually improved. Two years after onset, an EMG examination detected chronic denervation potentials in the left musculus sternocleidomastoideus and a few on-going denervation potentials in the left musculus extensor carpi radialis, but no denervation potentials in other limb muscles. Fasciculation potentials were found in tongue muscles. Thus, the present case was thought to have a reversible motor neuron syndrome clinically quite similar to ALS. A mild increase in IgE (346 U/ml) and a low-titer IgM-class anti-GM1 antibody were found in her serum though its pathological significance was uncertain. Any immunological aberrance may account for the pathogenesis. PMID: 11332188 [PubMed - in process] --------------------------------------------------------------- Neurology 1991 Oct;41(10):1541-4 Comment in: Neurology. 1992 Nov;42(11):2229-30 Neurology. 1992 Nov;42(11):2229; discussion 2230 Subacute, reversible motor neuron disease. Tucker T, Layzer RB, Miller RG, Chad D. Department of Neurology, University of California San Francisco School of Medicine. Four patients with a clinical syndrome closely resembling amyotrophic lateral sclerosis recovered completely, without treatment, 5 to 12 months after onset. Electrodiagnostic tests revealed acute and chronic denervation, with normal motor and sensory nerve conduction studies. The CSF was normal, and tests for paraproteinemia, heavy metal intoxication, and systemic illness were negative. Although such cases are rare, the possibility of spontaneous recovery should always be considered when counseling patients with suspected ALS. PMID: 1844350 [PubMed - indexed for MEDLINE] --------------------------- Will Hubben whubben@earthlink.net (3) ===== re: professor vs. homeopathic? (ALSD845) ========== >From : Wisampson@cs.com Date : Wed, 2 May 2001 Subject: Re: professor vs. homeopathic In order to help clarify some confusion, the following may help readers of S Kressen's note in ALSD Digest 845. The difference between medicine and "alternative" medicine is that medicine refers to methods that are effective. "Alternaive" medicine is a term specifically invented about 1980 to obscure the problem that the methods it is intended to describe are one of the following: Proved to be inefffective Not likely to be effective (implausible) Claimed by someone to be effective without evidence, and not proved to be effective. Note that the latter two can be invented by anyone, including anyone on this list, with the same amount of credibility. Note also that only one or two methods or sustances starting out as "alternative" or "holistic" out of thousands has ever been proved effective. The best example is vegetarian and low fat (not low sugar) diets. Fewer than five herbs out of hundreds in use have shown effectiveness. WSampson (4) ===== ALS information in Spanish language needed ========== Date : Wed, 02 May 2001 >From : Pamela Mathy Subject: RE: I am a speech language pathologist who works in Arizona. I am seeing an increasing number of PALS for whom English is not their first language. I am hoping that some of the readers of this newsletter may be able to provide me with resources (books, internet, or other) that provide information about ALS in different languages. I am especially looking for information in Spanish. Thank you very much for any assistance. Sincerely, Pamela Mathy Pamela Mathy, Ph.D., CCC-SLP Director of Clinical Services Department of Speech and Hearing Science Arizona State University P.O. Box 870102 Tempe, AZ 85287-0102 Phone: 480-965-1974 Fax: 480-965-8516 (5) ===== Gateways to Death Identified ========== Date : Fri, 27 Apr 2001 >From : Will Hubben Subject: Critical initiating factors that launch the apoptotic process : identified >From Hitoshi Nishio: http://www.hhmi.org/news/korsmeyer.html ------------------------------------------------------- Gateways to Death Identified "These studies show that BAX and BAK are the obligate gateway that clearly starts the process of apoptosis," said HHMI investigator Stanley J. Korsmeyer. April 27, 2001-- Researchers have identified two key components of what are likely "gateways to death" in the membranes of the cell's mitochondria. When cell death signals are received by the mitochondria, these gateway proteins are believed to form pores in the mitochondrial membranes that allow molecules to pass into the cell, generating a cascade of biochemical reactions that causes cell death. Programmed cell death, also called apoptosis, culls unneeded cells during development and growth. It also protects organisms by killing defective cells. Defects in apoptosis can be harmful--leading to extended cell survival, which may allow cancer cells to expand, for example. Conversely, faulty apoptosis can also accelerate the rate of cell death, and may contribute to neurodegenerative diseases, immunodeficiency disorders and infertility. The discovery of these gateway molecules could provide new molecular targets to improve therapy for a wide range of disorders, say the researchers. In an article published in the April 27, 2001, issue of Science, researchers led by Howard Hughes Medical Institute investigator Stanley J. Korsmeyer (http://www.hhmi.org/research/investigators/korsmeyer.html) show for the first time that two pro-apoptotic proteins, called BAX and BAK, constitute the critical initiating factors that launch the apoptotic process in mitochondria. According to Korsmeyer and his colleagues at the Dana-Farber Cancer Institute at Harvard Medical School, a control protein called tBID triggers BAX and BAK to form pores in the cell membrane that allow cytochrome c to flow into the cell. This influx of cytochrome c launches the biochemical death cascade. "Earlier work revealed that cells contained an anti-death molecule, BCL-2," said Korsmeyer. "But then we began finding these 'evil twins' such as tBID--closely related members of the BCL-2 family that were pro-death molecules." The discovery of these molecules led Korsmeyer and his colleagues to propose the "rheostat" model of apoptosis, in which a balance of pro- and anti-apoptotic molecules determines whether a cell lives or dies in response to various stresses. The researchers also found that excess BAX and BAK induced cell suicide if a cell were to be stressed by chemicals or other apoptosis-inducing signals. "We knew that further upstream, BID had to be activated by known death receptors on the cell surface. But then we began to ask how this activated tBID, and its cousin molecules, triggered the beginning of apoptosis in the mitochondria. We believed it had to cause a central initiating event that released cytochrome c from the mitochondria. We had evidence that tBID just couldn't do it by itself." In their experiments, Korsmeyer and his colleagues used a retrovirus to insert activated tBID into mouse embryonic fibroblast cells. In those cells, which were engineered to lack single genes for either BAK or BAX, introducing tBID triggered normal cell death. "So, then we wondered whether both downstream molecules were required, which is why we tested double knockout cells lacking both BAX and BAK," said Korsmeyer. "The combination of taking out both proteins was extremely synergistic, and these cells were highly resistant to apoptosis. It was a very impressive effect," he said. The scientists also found that in mouse liver, BAK and BAX were required for response to normal death signals. According to Korsmeyer, detailed molecular studies of the behavior of the two proteins suggest that activated tBID can trigger BAK or BAX to change their conformations from receptors in the mitochondrial membrane to pores that allow cytochrome c, and perhaps other death-related molecules, to flow into the cell. In additional experiments reported in the Science article, the researchers tested whether a broad range of death signals--ranging from DNA damage to radiation--required BAX and BAK to trigger apoptosis. They found that the two proteins were, indeed, required. Similarly, stress signals from the cell's endoplasmic reticulum, where protein transport takes place, failed to trigger normal apoptosis without BAX and BAK. "These studies show that BAX and BAK are the obligate gateway that clearly starts the process of apoptosis," concluded Korsmeyer. He added that this apoptotic process involves not only disruption of function in the cell, but within the mitochondrion itself, in part because of the loss of cytochrome c from the energy-producing machinery. Given the central roles of BAX and BAK in apoptosis, said Korsmeyer, "in neurodegenerative disorders involving accelerated apoptosis, inhibiting this pro-death step might prove to be therapeutic. And conversely, in diseases like cancer, accelerating the activation of BAX and BAK could be a potential therapeutic as well." --------------------------- Will Hubben whubben@earthlink.net (6) ===== The ice flow sounds better ========== >From : RJose85341@aol.com Date : Wed, 2 May 2001 Subject: The ice flow sounds better. Dear Pals In ALS LAND: Many years ago in school I can remember a teacher telling the class how at one time Eskimo's would take their elderly, their infirm, and others who were non-productive people in their village.. down to the water and put them on an ice-flow that was headed south. The concept of this action was simple; those people who became a problem had to be removed so that others did not have to worry or work hard in their behalf. They gave them food, blankets, and shelter for their journey on ice.. and then they turned their backs on them and returned to village life. When the southern sun removed the ice... so too were the problems of the village removed.. and due to the fact that it all happened many miles south, out of sight and out of mind.. the remaining village people felt no guilt, or remorse, over the actions they had taken. NOW.. let's bring things up to date!! What does the Eskimo situation have to do with "OUR" world of ALS??? If you think of MEDICARE as the village people who put non-productive elderly people on an ice flow.. you can see a direct relationship. In recent weeks many things have happened to me that tells me that the Medicare Village has decided that Dumb Old Bobby needs to be removed. They are also starting to turn their backs.. and are walking away!! Let me show you how this is being done.. in the actions on the next page: (Also keep in mind that this applies to all United States citizens who have life ending diseases.) A.) PHYSICAL THERAPY: My legs are worthless as most of muscles are gone. However, they have always felt better when the"PT" was finished doing her work on them. "FEELING BETTER" is not a goal for Medicare.. rather they will pay as long as we show progress. With my legs showing no progress.. they will no longer pay for physical therapy. (One step toward the ice flow!!) B.) BATHS: Was getting Mon/Weds/Friday assistance. They decided that I only needed a bath on Monday & Fridays. Our kids are going to pay for the Wednesday (Splash day) event to continue, as the second step, toward the ice flow was taken by Medicare. (NOTE: Does not take a brain surgeon to figure out that THE BOTTOM LINE.. AND BUDGETS are behind all moves toward not caring for seniors who have exotic disease's.) NOW..if you can prove that you are soon to die (six months) they will re-new your care.. At that time HOSPICE takes over.!! Remember you have to prove that you will die! C.) DRUGS (Pills) Really don't have to tell American Seniors that they are being ripped off by the major Pharmaceutical organizations.. and by the FDA (who allows a 65% higher price on most drugs, over the prices being charged in neighbor countries..FOR THE SAME PILLS.) Wife and I paying over $700.00 per month... NOW THINK ON THIS!! The ding-a-lings in Congress will not vote for Medicare to buy drugs that help our quality of life.. and help Maintain our bodies SO we do not need hospitalization. Once we go down tho.. they spend many thousands trying to RE-NEW our health.. What's wrong with that picture!! (The ice flow sounds better.) This could go on for several pages but in the main for naught. The actions of the Eskimo's.. at least had reason and logic for it's base. In order that their village was to survive they needed to remove those that were non-productive. Our problems are quite different; no logic nor reason. A pathetic political system that builds dams that are not needed; and pays off political debts by letting their friends sell $500.00 hammers to our armed forces. Also due to the fact that our corporations must pay big dividends to their investors it is not profitable for them to extend resource dollars for ONLY 30,000 American's who are invaded by the dreaded ALS disease. SUMMATION: One fantastic thing about ALS is that it does NOT rob you of your mind and one can ponder and organize thoughts. So let's do exactly that. Thousands of people, world wide, receive this ALS DIGEST. WHAT IF EVERYONE WHO READS THIS WERE TO: Write a letter, send an E-mail, or call and voice your own personal thoughts to: 1.) Medicare 2.) Social Security. 3.) Senators. ( State & Federal.) 4.) Congressmen & Women. (State & Federal) 5.) Your Churches 6.) President Bush. 7.) Whoever Comes to mind. YOU DO NOT HAVE TO HAVE "ANY" DISEASE TO WRITE.. JUST A WILLING HEART! TELE: NUMBERS/addresses. MEDICARE: 1-800-633-4227 MEDICARE: (INTERNET) www.medicare.gov Medicare Mail: U.S. DEPT. OF HEALTH SERVICES HEALTH CARE FINANCING ADMINISTRATION 7500 - Security Blvd. Baltimore, Maryland. 21244-1850 ==================================== SOCIAL SECURITY ADMINISTRATION 1-800- 772-1213 ==================================== NOTE: MEDICARE NUMBER AND SOCIAL SECURITY NUMBER ABOVE CAN ALSO GET YOUR STATE (your) offices as well as National. For Senators and Congress Members consult your local phone books. =================================== Folks let's get thousands of communications heading out to the leaders. Most of us current Medicare recipients will not be helped..but, our kids and Grandkids just may be a part of the changes that need to happen. HAVE A GREAT DAY. BOBBY JOSE... Iowa's answer to Andy Rooney. (7) ===== Help Request from Colombia ========== Date : Thu, 3 May 2001 >From : Tatiana Ordonez Subject: MY NAME IS TATIANA, MY 53 YEARS OLD MOTHER HAS BEEN CONFIRMED AS AN ALS PATIENT FOUR WEEKS AGO. WE ARE COLOMBIANS. WE ARE LOOKING INFORMATION AND OTHER PATIENTS WHO CAN HELP US TO UNDERSTAND AND LIVE WITH THE DISEASE. WE ALL LOVE MY MOTHER AND WANT TO IMPROVE ALL SHE NEEDS, AND TO KNOW HOW WE CAN HELP HER TO LIVE WITH THE DISEASE. THANKS FOR YOUR HELP. TATIANA ORDSQEZ VASQUEZ Bogota, Colombia e-mail: tataordonez@yahoo.com === end of alsd 848 ===