=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #811 (19 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Vent Alarm 2 .. Professor vs. homeopathic? 3 .. Rest in Peace Dear Mom 4 .. re: Noni 5 .. For Sale - Slider bathing system 6 .. re: Super Emotional Feelings 7 .. re: Traveling with BiPAP 8 .. Umbilical cord blood transplant for ALS patients 9 .. bed sores 10 . re: stem cells 11 . More on stem cell advances 12 . HeadMouse (1) ===== Vent Alarm ========== Date : Sat, 17 Feb 2001 00:41:21 -0500 (EST) >From : Bill Morgan Subject: Alarm I am Bill Morgan. My wife Peggy was diagnosed with ALS in January of 1983. She received a Trach and G-Tube in January of 1985. In February of 1985 Peggy came home from ICU and has been home ever since. I will not bother you with the details, but she is still doing well, even though she is paralized except for some facial movement. We communicate with lip reading, mind reading, and a letter board, if all else fails. The reason I am writing you is that I am her caretaker a lot of daytime hours and all night hours. My problem is that I'm having difficulty hearing the vent alarm when she needs attention. Normally I hear this alarm, but sometimes when I'm very tired and sleepy I miss it. Two nights ago, Peggy says I missed the alarm for about thirty minutes, with the alarm going off with almost every breath. Luckily she had no "plugs" during that time. She was in a state of panic when I finally woke up. My question is this. Is there an alarm system that can plug into the Vent which has a variable sound level? In my case, I would want an alarm whose volume could be turned up very loud. Bill Morgan email: billpeggy57@earthlink.net (2) ===== Professor vs. homeopathic? ========== >From : "amitay waisman" Date : Sat, 17 Feb 2001 23:36:51 +0200 Subject: professor vs. homeopathic I was diagnosed as ALS patient in January the 2nd 2001. My professor told me that there is no cure to this disease and the only medical that approved is the RILUTEK. I didn't want to give up with out any attempt to do something so went to look for solution or some other options at the internet. The only thing that I found were vitamins, minerals and vegetarian food by changing all my daily food from meat, milk and sugar. I went to well known homeopathic and she fix me the following vitamins and minerals table: vitamims list per day name in English before/after meal No. per day Herbal immuplex complex After VM-2000 After C FACTORS 1000 MG After NAC n-acetyl-c-ysteine Before vitamin e with selenium After BRN modulators After magnesium citrate After chromium picolinate 200 mcg After creatine complex After megasorb b-complex 50 After I started to fulfill the homeopathic instruction and thought that with sport exercise I am doing my best I this terrible ALS diseases until I came to my professor. He said that vitamins and minerals are have no connection to ALS but to profit of the vitamins company. So now my wife and me are confuse what to do? What is alternative way? Who is right my professor with the RILUTEK or homeopathic with the vitamins? Or both of them? Thank for any response to my e-mail. Amitay waisman amitywaisman@hotmail.co.il (3) ===== Rest in Peace Dear Mom ========== >From : "Joan Cassidy" Subject: Rest in Peace Dear Mom Date : Wed, 10 Jan 2001 07:39:23 -0800 My Mom, Eileen Hampton 79 yrs old, who was diagnosed 3/99 passed away 1/8/01. I cannot express how much this newsletter meant to her and how much help we gained from it. So many people responded when we made inquiries and we acquired so many helpful hints on how to live with this awful disease. I would like to thank you all very much and let you know that I will forever think of you all. When no one else could help us you were always there. Joan Cassidy proud daughter of Eileen. (4) ===== re: Noni ========== >From : GLAUBERSCHLESING@aol.com Date : Sun, 18 Feb 2001 23:25:22 EST Subject: Re: Dear Dave Gilman, Concerning your request for Noni Juice. My father that has ALS has tried the juice which has alot of vitamins but be careful if you are a diabetic because his sugar shot up after drinking it because of its high sugar content. Also, don't let them talk you into claims of a cure. It is only a drink which you might enjoy. Sara glauberschlesing@aol.com (5) ===== For Sale - Slider bathing system ========== >From : SheriBell@aol.com Date : Sat, 17 Feb 2001 02:30:37 EST Subject: "Slider bathing system" for sale Hi everyone. My Dad passed away from ALS in December and we have a "slider bathing system" that he never used. Please write me if you are interested. I live in Los Angeles county, but I am sure we can ship it if needed. Sheri Bellante Telephone: (714) 544-7447. (6) ===== re: Super Emotional Feelings ========== >From : "Jan van Atten" Subject: Super Emotional Feelings Date : Sun, 18 Feb 2001 21:38:40 +0100 Uninhibited crying and laughing is known to be a reflex that happens with PALS. I can show emotions, but it would go too far to call these as emotional unstable. In spite of crying easily with no deeply emotional occasions, and laughing when I should cry, I feel emotionally as stable as before. But believe me: it can be quite embarrassing and people always tell me to keep calm. I do think the only ones that should keep calm are those very people. I do not react to teach Michael a lesson, but to tell other PALS not to worry. Jan van Atten Pals from Rotterdam (7) ===== re: Traveling with BiPAP ========== Date : Sun, 18 Feb 2001 14:38:23 -0800 >From : "Edward Anthony Oppenheimer, MD" Subject: Re: Traveling with BiPAP Dear Mr. Siwak, Yes this can be done. Respironics' customer service department should be able to assist you or your respiratory therapist. You can search past issues of ALS Digest on line by going to: http://health.oldeman.net I typed in: BiPAP battery ... and found some very helpful comments. I have pasted one in below, an email contributed last year, ALS Digest #692 (13 February 2000). It may be helpful. Best wishes, Edward A. Oppenheimer, M.D. Pulmonary Medicine, Los Angeles ALSD 692 (3) =========== RE: backup power ========== Date : Thu, 03 Feb 2000 10:42:38 -0500 >From : Kevin May, RRT Subject: backup power for BiPAP People interested in obtaining a back up power source for Bi-level (BiPAP) devices can go to most local homecare companies experienced in BiPAP units and request the following: 1. DC Interface Module made by Respironics part number 552097. Price approximately $250.00 (this device can also be used to plug your BiPAP unit directly into a cigarette lighter in your vehicle to minimize running you portable battery down). 2. Deep Cycle Marine Battery group 22 or group 24 (they vary in size and amp hours, you can pick the battery size that best fits your needs). Price varies greatly depending on the size and amp hours but typical costs will run $140.00 to $260.00. 3. A Battery Case, I have used cases made by Cargo. Price approximately $100.00 4. DC Battery Adapter Cable made by Respironics part number 532209. Price approximately $75.00 5. Automatic Battery Charger. Various Models available just make sure you pick an automatic charger that will stop charging once the battery is fully charged. I have found that Exide chargers work well. Price approximately $100.00 to $150.00. Total Cost: $665.00 to $835.00. Please keep in mind that the above prices are approximate. Many homecare companies may have different pricing. I picked the upper end of the pricing range to give you the worst case scenario. Some companies will charge more and many more will charge equal to or less money. Ask the homecare company to assemble the device and to instruct you on its use. I recently saw an advertisement from a company charging $1500.00 plus $150.00 for shipping. The above is a lower cost option and you can most likely obtain the device from a local homecare company and save on shipping charges. Please keep in mind that these devices weigh a great deal. Typical weights range from 35-80 pounds or more. If you were to use this battery on a wheelchair for portable use you need to consider the size and weight of the device you are looking at. You will need to have a vent tray installed on your wheelchair. You will also need to be aware of the size of the unit because you need some place to store the BiPAP unit as well. I saw one company advertising a unit and they had a picture of the device on a vent tray but I could not see where there was room for the BiPAP. Something else to keep in mind. What will you use the battery device for? Will you use it to provide portable power to be able to leave the home and still continue to use the BiPAP? or will you use the battery to power the BiPAP during power outages? If you want it for portable power than the above system is the way to go. But if you want the battery just for power outages then I would spend my money on a small generator. A small generator would cost you a similar amount of money but would be more practical. If you power is out for an extended period of time and you have a back up battery system once the battery is dead you would need a power source to recharge it. A generator only requires gasoline and it also could be used to power additional equipment in your home (depending on size and power output). I hope I have given you information that will allow you to make an informed choice and hopefully save you money in the process. Good Luck! Kevin May, RRT (8) ===== Umbilical cord blood transplant for ALS patients ========== >From : RSiblo@aol.com Date : Sun, 18 Feb 2001 22:21:27 EST Subject: Umbilical cord blood transplant for ALS patients We are seeking information from physicians and ALS patients with knowledge or experience of the umbilical cord blood transplant procedure from a relative to the ALS patient or from a general donor cord bank to the ALS patient. From our research within the US, it appears that this procedure is conducted primarily on patients diagnosed with cancer and that it has never been researched or attempted on the ALS patient. Thank you for your response. Robert Siblo 703-323-7073 rsiblo@aol.com (9) ===== bed sores ========== >From : "MAMASTRAUSS" Subject: Re: Date : Mon, 19 Feb 2001 10:56:10 -0800 I have enjoyed receiving and reading the digest. But I have noticed that the problem of bed sores has never been addressed. I wonder how most PALS address this problem. What do all of you do when in a wheelchair or a recliner for most of the day? My husband is just beginning to have occasional skin breakdown on his buttocks. We have developed a routine of massage and lying down for a few hours on his side/day. Does anyone have any magic advice? We do have a Rojo chair cushion and an alternating air mattress for his bed.Thank you and God Bless. Jane Strauss (10) ===== re: stem cells ========== >From : lbfizziks@aol.com (LBfizziks) Newsgroups: sci.med.diseases.als Date : 19 Feb 2001 03:04:00 GMT Subject : stem cells Parkinson's Cure May Be Near By PAUL RECER .c The Associated Press SAN FRANCISCO (Feb. 16) - Scientists may be on the brink of curing Parkinson's disease using transplanted embryonic stem cells, but where and when that new treatment is tested in humans depends on unresolved political decisions, researchers suggested Friday. Dr. Ole Isacson of Harvard Medical School and Dr. Ronald McKay of the National Institutes of Health said Friday they have both ''cured'' Parkinson's in mice and rats, using stem cells removed from embryos of laboratory animals. In a report at the national meeting of the American Association for the Advancement of Science, Isacson said mouse and rat embryonic cells, after careful processing, can be grafted into the animal brains where they transform into replacements for cells killed by Parkinson's. "In mouse models (laboratory tests) these cells have restored function," said Isacson. Using a slightly different technique, McKay said his NIH lab has also prompted mouse embryonic stem cells to convert into cells that are lacking in Parkinson's. McKay and Isacson said researchers are almost ready to test the technique in humans, but social and political issues must be resolved in the United States before that step can be taken in this country. At the same time, McKay said it may happen soon in Britain, France or the Netherlands, as those countries are adopting policies to advance embryonic stem cell research. "It's going to happen, but just where may depend on social and political issues," McKay said. ''There is a great sense of optimism shared by many people in the field right now.'' In the United States, some groups, including some members of Congress, oppose the use of embryonic stem cells in research because gathering the cells requires the death of a human embryo. New NIH guidelines permit federal funding of such stem cell research, but only if the cells are extracted from embryos in labs not receiving federal funding. Tommy Thompson, the new secretary of Health and Human Services that oversees NIH, said he is reviewing the policy on embryonic stem cells research. Some researchers have sought NIH funds to conduct embryonic stem cell studies, but no grants have been issued, said McKay. More than 1 million Americans have been diagnosed with Parkinson's, a disease caused by the death of brain cells that produce dopamine, a key nerve chemical. When patients lose about 80 percent of these cells, they develop the classic Parkinson's symptoms: tremors and rigidity. Parkinson's can be treated with L-dopa, a drug that makes dopamine in the brain. But L-dopa is effective for only a short time and after that the disease progresses. Limited experiments using brain cells from aborted fetuses have stabilized patients for up to 12 years, Isacson said. The transplanted cells convert to dopamine-producing cells, replacing those lacking in patients with Parkinson's. But using tissue from aborted fetuses in research also is opposed by many groups. And because of limited availability and for technical reasons, fetal tissue is not considered ideal for treating Parkinson's. The best hope, said the researchers, are the embryonic stem cells. These are master cells that can be coaxed to transform into virtually any type of tissue in the body. Embryonic stem cells can be grown in great numbers, making them readily available for treating thousands of patients, the researchers said. "You can generate embryonic stem cells with huge efficiencies," said McKay. McKay said his lab has found ways to cause mouse embryonic stem cells to change into the dopamine-producing cells lacking in Parkinson's. ''We can take the embryonic stem cells through a series of transitions until they become the dopamine cells,'' said McKay. Isacson said his lab injects into the brain specific cells extracted from the embryo and that a natural process in the brain then transforms them into dopamine producers. "The cells organize themselves to become very functional," he said. "We see the cells behaving in a way to reverse the symptoms (of Parkinson's) in the mouse and rat." (11) ===== More on stem cell advances ========== Date : Mon, 19 Feb 2001 15:05:33 -0600 Subject: More on stem cell advances >From : Patrick Griffin >From InfoBeat News - News for Monday, February 19, 2001 *** Umbilical cords could repair brains SAN FRANCISCO (AP) - Umbilical cords discarded after birth may offer a vast new source of repair material for fixing brains damaged by strokes and other ills, free of the ethical concerns surrounding the use of fetal tissue, researchers said Sunday. In animal experiments, at least, cells from umbilical cords appear to greatly speed recovery after strokes. They work with a simple infusion into the blood stream without the need for direct implantation into the brain. Although many details need to be worked out, Dr. Paul R. Sanberg of the University of South Florida said he hopes to try the approach on stroke victims within the next year or two. Many experts believe that primitive tissue called stem cells will someday be routinely used to make human spare parts. They might replace tissue damaged by many different diseases, especially such brain ailments as strokes and Alzheimer's disease. These generic cells can be nudged to develop into all sorts of specialized tissue to repopulate every part of the body from head to toe. One source of stem cells is aborted fetuses or fertility clinics' discarded embryos. However, this is especially contentious since anti- abortion groups oppose fetal and embryonic stem cell research, and federally funded scientists cannot use stem cells from these sources. Patrick Griffin = Your attitude determines your altitude. = (12) ===== re: HeadMouse ========== >From : Dasroster@aol.com Date : Fri, 16 Feb 2001 14:28:34 EST Subject: Re: Jon, I have a HeadMouse that is the portable version. I chose the portable because I swap it between my desktop PC and my laptop PC. It has restored my communicative ability. It is stable and NEVER crashes. My friends made a little stand that holds the tracking unit that sits in front of my monitor, when I have it setup on my desktop PC. I highly recommend you also get the little program called "Dragger" which is a dwell cursor program and will perform mouse clicks and functions when you hover the HeadMouse cursor on an area you want clicked. This is a kick ass device BUT requires that the PALS have head/neck movement. Kyle - "We will not be hidden and left to die ever again! Get used to it."... Kyle George Hahn (PALS dx 1995) http://kylehahn.com === end of alsd 811 ===