=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #812 (22 February 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Some answers for your consideration 2 .. re: Prostate cancer and ALS? 3 .. re: creatine 4 .. skin break down 5 .. ALS Participants 6 .. re: homeopathy vs. the professor 7 .. re: Robitussin (ALSD 801) 8 .. transplanted diaphargm? 9 .. Van for sale in Florida 10 . mouse clicker 11 . re: HeadMouse 12 . Cord blood stem cells 13 . Heridetary ALS 14 . re: Headmouse 15 . Lou Gehrig's Disease Association (1) ===== Some answers for your consideration. ========== >From : Wisampson@cs.com Date : Tue, 20 Feb 2001 02:22:52 EST Subject: Re: Some answers for your consideration. The Australian clinics' "alternative" methods supplied to Mr. John Grady are ineffective. Those of you who have had the good fortune of having slow progression or of having experienced the erratic stopping and starting of some forms of ALS will recognize that whatever one is taking at the time of plateau will be perceived as having worked. One can both understand Mr Grady's perception and sympathize with his problem. R Fothergill asks if creatine causes cancer. I have not heard of that and find it highly unlikely. Creatine is a normal breakdown product of muscle, and is found in small quantities in the blood on its way to excretion in the urine. We would appreciate any references to such a claim to evaluate the quality of the research and report. Interestingly, the pseudo-treatment, Krebiozen of the 1950s-60s was found to be creatine. It did not cure or diminish cancer, either. Mr Edney brings up two issues...wet cell battery of Edgar Cayce, and heavy metals again. Most remember Edgar Cayce, "the Sleeping Prophet" (as I recall he was called) as the self-proclaimed healer who claimed he could heal people with his thoughts, etc. His claims were not verified, as one would expect. His institute and a small following still exist in Virginia Beach, Va. No battery or cell of any kind has been shown to be effective in ALS. The other issue, of heavy metals again, has no validity. The two authors, Casdorph and Walker, have written about various phantom diseases, such as candidiasis and multiple chemical sensitivities (Walker is a podiatrist, not a physician.) Their claims are unsubstantiated or erroneous. Again, there is no causal relation between heavy metals and ALS. Most will recognize these entries as well meaning, but erroneous. Most ALS Digest readers by this time know there are not "standard issue" physicians and "cutting edge" physicians. There are physicians who relay substantiated and valid information, and those who make erroneous and unsubstantiated claims. WSampson MD (2) ===== re: Prostate cancer and ALS? ========== >From : Wisampson@cs.com Date : Tue, 20 Feb 2001 02:23:23 EST Subject: There is no relationship between ALS and prostate cancer or ALS and radiation. Humans have a tendency to relate events that occur in sequence as cause and effect even when no causation exists. That is the way we are constructed, as are all animals. That is the way we learn. But that is also why we are often wrong. One can find discussions of this problem in psychology and philosophy books. W Sampson MD (3) ===== re: creatine ========== >From : Wisampson@cs.com Date : Tue, 20 Feb 2001 03:04:19 EST Subject: creatine This is the AP press release on creatine...not very revealing. The wording seems weak to me. WSampson PARIS, France (AP) -- French food safety experts have linked the popular training supplement creatine to a potential risk of cancer and have called for it to be listed as a banned substance. The use of creatine supplements, "particularly in the long term" constitutes "a potential carcinogenic risk," said a report by France's Food Safety Agency, or AFSSA, published on the body's official Web site on Wednesday. The report said that potential risks associated with taking creatine were "currently insufficiently evaluated," and that the product was of little benefit to athletes hoping to improve their performance. Creatine is an amino acid produced naturally by the liver and kidneys and stored in muscles. Athletes take creatine supplements to gain extra energy, train longer and harder -- and bulk up. The supplement is popular among pro and college athletes in the United States, where it is considered a legal alternative to steroids. The U.S. Food and Drug Administration lists it as a food supplement and allows it to be sold with no more restrictions than those on vitamins. Creatine is not listed as a banned substance by the International Olympic Committee, but its sale is illegal in France. High-profile athletes who have admitted to using creatine include the French tennis player Mary Pierce and U.S. baseball star Mark McGwire. The document urged sports governing bodies to consider listing creatine as a banned substance. Its use "involves a risk disproportionate to its effectiveness," said Jean-Louis Berta, a food safety expert at AFSSA. "Its harmlessness is far from being ascertained," he said. Past studies have indicated that creatine helps the body build muscle and store energy, and could even assist in preventing brain damage after traumatic head injuries. But the report by AFSSA's committee of experts on human nutrition found that the increased muscle bulk resulting from the use of creatine supplements was largely due to water retention. The experts also concluded that widespread claims concerning gains in strength and speed from taking creatine supplements were unfounded. A proven effect was only noticeable in activities lasting around 15 seconds, the report found. In addition to pointing out the potential cancer risk, the AFSSA report cited studies that associated creatine use with "digestive, muscular and cardiovascular problems." Copyright 2001 The Associated Press. (4) ===== skin break down ========== Date : Tue, 20 Feb 2001 08:20:33 -0800 Subject: skin break down >From : "Peggy Johnson" Skin break downs are a horror, and hard to heal. My adult son is quadriplegic, and we found these things to work: * sleep directly on high quality sheepskin (i live near a sheep farm) (the air bed in hospital was fantastic, though noisy. the alternating channel air mattress was great except for his heels) * use a gel cushion in the chair * frequent pressure relief by reclining in chair (if it's electric) or locking wheels and leaning back against tipper bars or the wall * when possible, do not lose too much weight * careful choices of underwear and pants * daily bathing, skin care and examination for signs of trouble * pressure relief, pressure relief, pressure relief * prevention, prevention, prevention Peggy Johnson Wonalancet, NH (5) ===== ALS Participants ========== >From : Mary Buchner Subject: ALS Participants Date : Tue, 20 Feb 2001 15:00:42 -0600 Participants in Clinical Trials. I placed this note in the Digest a few issues back, but my computer broke down and I was not able to read e-mail. This time I am using a different computer and a different e-mail address. Are any of you ALS patients who have been chosen to participate in a clinical trial willing to share any information with the other ALS public. We have no idea if these drugs are working, if we have a chance of hope, or if nothing is of any benefit. It is terribly helpless to be alone and not know what is being done. I know there are trials being conducted for Creatine, COQ10, Topiramate, Oxandrolrone, Albuterol, Celebrex, etc. Xaliproden, Gabapentin, Neotropohin, NAALDase. Maybe you have to sign something saying you are not allowed to discuss the results with anyone. However, that is really unfair to all of us who were not able to participate and have to just sit and wait with no hope. Please contact me. I will keep your anonymosity a secret. E-mail me at buchner.mary@co.la-crosse.wi.us (6) ===== re: homeopathy vs. the professor ========== >From : Wisampson@cs.com Date : Wed, 21 Feb 2001 19:46:47 EST Subject: Re: Regarding homeopathy vs. the professor It is a remarkable development that many find this question difficult to answer. But Mr. Waisman is appropriately confused because of recent economic offensive of fringe medicine practitioners and our societies' relaxation of regulation in many phases of life - medical care among them. Homeopathy is a 200 year old philosophy of medicine that has not changed since 1800, and whose advocates claim to see effects from ineffective materials. What they are unable to see is that they themselves are being fooled by selectively observing and seeing what they want to believe and see. Homeopathy involves selecting materials with effects mimicking the symptoms of the illness, and diluting them to dilutions at which there could not be any effect, and is none. Their reports in major journals are uniformly erroneous or mis-reported, bordering on misrepresentation. (I have reported at least two of these to the respective editors.) Journal editors swallow their implausible results - they are not doing their jobs. Homeopathy cannot cure or improve anything...advocates have had 200 years to demonstrate something convincing and they have not. Therefore, the professor, who probably knows this, has given appropriate advice. Also note that the vitamins and supplements listed are not homeopathic remedies, but are ordinary nutritional supplements, none of which is proved to alter the course of ALS. WSampson (7) ===== re: Robitussin (ALSD 801) =========== >From : WMoorhead@aol.com Date : Thu, 22 Feb 2001 14:36:35 EST Subject: Re: Alsd801 Robitussin My pulmonary doctor put me on Robitussin DM over 3 years ago. I take 30 cc's (6 tsp) 3 times a day. I haven't experienced any problems taking this dosage, my lungs are in good shape considering. You can save a bunch of money by buying Wal-Mart's generic brand 'Equate'. Take care and hang in there Bill Moorhead (8) ===== transplanted diaphragm? ========== >From : "skelpin" Subject: post Date : Tue, 20 Feb 2001 22:06:56 -0500 Does anyone have any information about the action of the phrenic nerve on the diaphragm. I am curious as to why we don't hear more about the use of a pacemaker. I understand it is more complicated than what it appears. Perhaps Dr Oppenheimer could clue me in. It seems a shame more hasn't been done in this area. Is there such a thing as a tranplanted diaphragm? Sheila (9) ===== Van for sale in Florida ========== >From : DOTBURK@aol.com Date : Wed, 21 Feb 2001 15:47:37 EST Subject: Van for sale in Florida 1996 Ford Windstar, IMS conversion, E-Z Lock mechanism, 88,000 miles $16,000 Please contact Maureen at 561-288-9899 or Dotburk@aol.com. (10) ===== mouse clicker ========== >From : "Mark Woods" Subject: RE: Date : Tue, 20 Feb 2001 14:23:07 -0600 Another great dwell mouse clicker is located at www.mousetool.com (11) ===== re: HeadMouse ========== >From : HollyHoffy@aol.com Date : Fri, 16 Feb 2001 13:52:13 EST Subject: Re: HeadMouse Jon Phillips asked about the HeadMouse. While I don't have a portable computer, I do use the Origin HeadMouse on my desktop computer. I love using it the past 2.5 years after I could no longer use the keyboard. It's rather expensive but it's paid for itself many times over with the amount of time I spend on the computer. The company is wonderful to deal with should you have any problems or questions. (12) ===== Cord blood stem cells ========== Date : Tue, 20 Feb 2001 21:37:33 -0600 Subject: Cord blood stem cells >From : Patrick Griffin Tuesday February 20 10:18 AM ET Cord Blood May Replace Fetal Cells in Brain Research By Karla Harby SAN FRANCISCO (Reuters Health) - Stem cells collected from umbilical cord blood could be as useful as cells taken from embryos or aborted fetuses for developing new treatments for brain disorders, such as stroke and Parkinson's disease according to new findings released here at the annual meeting of the American Association for the Advancement of Science. Stem cells can be collected from numerous places, including adult blood samples, blood from the umbilical cord of newborn babies, aborted tissue or from human embryos left over from in vitro fertilization procedures. They are primitive cells thought to hold great promise in the treatment of human disease, and the most promising are those collected at the earliest stages of life. Experiments in mice with recent strokes show that when modified cord blood cells are injected intravenously, the cells travel to the damaged area of the brain. There they take up residence and begin to act as normal brain cells, compensating for some of the function lost to stroke. These early experiments suggest that mice can regain about 50% of lost function after treatment, with near-normal function observed after injection for some specific tasks, said Dr. Paul R. Sanberg of the University of South Florida in Tampa. Umbilical cord blood has scientific advantages over tissue harvested from elective abortions, Sanberg said. With about 4 million babies born in the United States each year, the supply is potentially abundant, although currently about 99% of the blood from umbilical cords is discarded. By contrast, he said obtaining sufficient cells from elective abortions can be quite difficult. Cord blood cells also cause fewer graft-versus-host disease reactions-- which is a potentially life-threatening immune reactions that can occur after a transplant--and fewer immune reactions generally, because the cells are so immature. Cord cells also proliferate rapidly until they become neuronal cells, which by nature do not divide. For these mice experiments, the cells were pretreated with retinoic acid and other processes to make them more apt to behave as nervous system cells after injection. In an unusual technique, the cells were injected into a vein instead of directly into the damaged brain region, through the skull, as Sanberg has done in the past with other kinds of cells. ``In theory they should go all over the place, but they tend to be more in the stroked area,'' he said. Because cord blood cells are already being used to treat human diseases, such as rare leukemias in children, Sanberg said that human trials of cord blood to treat stroke might occur relatively soon, perhaps within the next two years. Patrick Griffin (13) ===== Heridetary ALS ========== >From : michael Newsgroups: sci.med.diseases.als Subject : Heridetary ALS Date : Sun, 18 Feb 2001 00:06:45 +1000 Can anyone supply me with information about heridetary ALS. Are the symptoms or life expectancy any different than from Sporadic ALS. Is there an average age of onset etc?. Also, Of the unidentifiable form of heridetary ALS. The %80, for which no gene has been identified. Is this called FALS3 ?. Any information would be greatly appreciated. Yours Sincerely Michael. (14) ===== re: Headmouse ========== Date : Fri, 16 Feb 2001 18:25:03 -0500 >From : Catherine Copeland Subject: Re: headmouse We got a headmouse for my father who used it in combination with a foot clicker and Wivik keyboard, because he had a hard time using the Dragger software with the Wivik keyboard. I think you'll enjoy the headmouse. We were able to lease the headmouse very reasonably through Sunnybrook hospital here in Toronto. Is that option available to you, either through a hospital or ALS Society? Good luck! Catherine Copeland (15) ===== Lou Gehrig's Disease Association ========== >From : Jwatkins48@aol.com Date : Tue, 20 Feb 2001 21:16:29 EST Subject: The Lou Gehrig's Disease Association of Southwest Florida (LGDA) announces the formation of an ALS Patient/Caregiver support group. The support group is focused on meeting the specific needs of people with ALS and their caregivers living in the greater Sarasota area. Meetings will be held on the third Thursday of every month. The first meeting will be held on Thursday, February 22nd at 7:00 pm at the Heritage House, 2750 Bahia Vista Street in Sarasota. For further information call Mariella Doyle at 941-955-4771 or e-mail to lgdaexdir@hotmail.com. === end of alsd 812 ===