=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #831 (02 April 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. 1999 Van For Sale 2 .. ALS testimony 3 .. re: mercury and neurons (ALSD828) 4 .. communication for ALS patients? 5 .. Web Accessibility Awareness 6 .. Syringes 7 .. re: Catheter for advanced ALS? (ALSD829) 8 .. Portable Ramps 9 .. Drool 10 . Dr. Sam Baxas? 11 . Rilutex question 12 . wheelchair carrier 13 . re: dry scalp 14 . Zygo Lightwriter Model SL-35 15 . evidence for potential therapeutic effect 16 . ALS PINpoint POLL ALERT 17 . protein Bax appears to be key factor 18 . re: HMO and quality of care (1) ===== 1999 Van For Sale ========== >From : "Carol Ribar" Subject: 1999 Van for Sale Date : Mon, 19 Mar 2001 1999 Ford E150 Conversion Van for sale. Braun Crowriver Vangater II Lift installed in the mid section of the van. Located in the Northwest Suburbs of Chicago. If interested, please email. Carol Ribar carolr59@megsinet.net (2) ===== ALS testimony ========== Date : Sat, 31 Mar 2001 15:59:50 -0800 (PST) >From : christine lyszczasz Subject: ALS testimony My name is Christine Lyszczasz and I am a Registered Nurse. My husband was recently diagnosed with ALS on Jan.2001. The end of Feb., I started treating him with essential oils to his spinal column. My husband after a few days started gaining strength in his legs and was able to walk with more stability. One month later his Neurologist was amased at his ability to be coordinated and his muscle strength. After hearing about a research paper written by Dr Martina Berger on the finding of the echo virus. I contacted her after reading about the article. We discussed her findings and my novel treatment using the essential oils. She asked if we could do a small research study using the oils in the laboratory with a cell membrane, mouse model and then clinical studies if the results were favorable. We presently have some funding to start and are looking for ALS patients to give a small blood sample for the study. I have talked to the wife of another ALS patient who is also taking a form of one of the essential oils with much improvment in his walking and muscle strength . PLEASE CONTACT ME AT MISTAR77@YAHOO.COM IF INTERESTED IN FURTHER INFORMATION ABOUT THE RESEARCH. THANK YOU CHRISTINE LYSZCZASZ (3) ===== re: mercury and neurons (ALSD828) ========== >From : Jim Duke Subject: Re: ALS Digest 828 Mercury and Neurons Date : Thu, 29 Mar 2001 The post by Mr. Windham is incorrect. At no time is ALS linked with mercury in this article, in fact, the term ALS is not utilized in the journal article. The article clearly demonstrated that neural growth in snails could be inhibited with exposure to mecury but lead and other metals had no apparent effect. (4) ===== communication for ALS patients? ========== >From : BobbieCobb@aol.com Date : Mon, 19 Mar 2001 Subject: commucication for ALS patients? A patient, diagnosed with ALS in May 1980, has been bedridden and totally life support dependent since July 1981 (g-tube, ventilator). Is that a record, do you think? For the first 13 plus years the patient was able to communicate with an eye chart and a brow switch to a computer. Eyebrow and eye movement are no longer functional which has limited communication to almost non existence. The patients occupation was in research and development and insists that there is a way for brain waves to be read by the computer as a means of communication. It would be appreciated if anyone with knowledge of such a system, either presently in use or even in the planning stage, would contact us at the above address. (5) ===== Web Accessibility Awareness ========== >From : "Steve Holly" Subject: Web Accessibility Awareness. Date : Sun, 1 Apr 2001 I would like you all if possible, to help a friend of mine who is blind and writing his third year dissertation on the causes and effects of web inaccessibility, and although he has gathered a lot of information that supports his belief that poorly designed web sites are more than just a blind issue. I have put a questionnaire up onto my site and wondered if as many people as possible could spend a small amount of time filling it out. Here is the link to the questionnaire : http://www.steveholly.com/bnbform.html There is also a link on my home page : http://www.steveholly.com May I take this opportunity to thank those of you who are able to fill out the questionnaire on behalf of Bim, and also a big thank you from me. Kind Regards Steve Holly www.steveholly.com (6) ===== Syringes ========== >From : "Robert Dick" Subject: Syringes Date : Mon, 5 Mar 2001 I would like to know if there is a secret to getting those disposable syringes to work easily. I have tried putting oil on mine and it works good then, but seizes up if it is left for any length of time. Is there a better syringe out there? Thank you Doreen Dick (7) ===== re: Catheter for advanced ALS? (ALSD829) ========== >From : LanaVan@aol.com Date : Sat, 31 Mar 2001 Subject: Re: Catheter? John, If possible, I would recommend NOT using catheters, at least not exclusively. My Dad did not suffer from skin breakdown until he was no longer able to help us get him on the toilet. (We used condom catheters only for very long road trips such as to the dr.'s offices) Then, his skin wasn't able to handle being in the same chair all day every day-even though we lifted him in the Hoyer lift several times a day to change his undergarments. Once skin breakdown begins, it's very hard to get a handle on it. Just a suggestion-hope it's helpful. Lana PS-If you need more information, hints, tips, etc.. please feel free to e-mail me. We dealt with this for 2 1/2 years in our home before my Dad went home to Heaven, so we know at least some things. (8) ===== Portable Ramps ========== >From : "Don Osterman" Subject: Portable Ramps Date : Thu, 29 Mar 2001 Prairie View Industries, Fairbury, Ne makes a portable ramp which can be used van access or used at a friends house to overcome the step hassle. These ramps are available in lengths ranging from 5ft to 10ft and are 30 inchs wide. They are made of aluminum and the weights vary from 23lbs to 52lbs. These ramps are well made and are not riveted together. You can check out their web site at URL: http://pviramps.com/multfld.html (9) ===== Drool ========== Date : Thu, 29 Mar 2001 >From : djdunn@ns.sympatico.ca (Donald Dunn) Subject: Drool One thing that I do no see a lot about in the Digest is drool. I have had it almost from the beginning. It has now reached a point where I am pretty well drooling constantly. I soak about ten hankerchiefs a day along with a lot of Kleenex and toilet paper sheets. Is there anything that can be taken to at least slow it down? It is at a point where I go to crush a pill for my gastro tube and I crush and clear my mouth into my hankie, put water in with the pills, and clear again, put it on the table to wait for disolvement and ditto. At periods it stops, usually when sitting down and relaxed. Stand up and drool down. Sometimes it can be felt as it starts to come. Other times my leg suddenly feels soaking, and there is in a large spot. Cheers Don Get high and stay high (Glider Pilot motto) (10) ===== Dr. Sam Baxas? ========== >From : TLTERNET@aol.com Date : Thu, 29 Mar 2001 Subject: Re: HGH,Dr Sam Baxas I've been recently diagnosed with motor neuron disease-probably ALS. I've heard Dr Sam Baxas in Switzerland has had success slowing & sometimes stopping the progress of the disease.I'd like to know if anyone has had actual experience with Dr.Baxas & if it's been successful. He also has an office apparently in Miami,Florida. Terry, TLTERNET@aol.com (11) ===== Rilutex question ========== >From : RivJW@aol.com Date : Sat, 10 Mar 2001 Subject: Re: Does anyone have any experience with Rilutek? Jim was taken off it in Dec. 2000 after he's liver enzymes had gone up. They are finally down and he is thinking about going back on Rilutek. Thanks. Kim (12) ===== wheelchair carrier ========== Date : Wed, 07 Mar 2001 >From : Tom and Linda Hayes Subject: wheelchair carrier I'm looking for a wheelchair carrier. The kind I need is manual and fits in a trailer hitch and tilts for the chair to be rolled up on it and folds up when not in use. I live in North Florida. My husband was dx with ALS in October 2000. My e-mail is sunnybanks@nefcom.net. Thanks Linda Hayes (13) ===== re: dry scalp ========== >From : "Moore Family" Subject: Thanks Date : Sat, 24 Mar 2001 I would like to thank everyone for all the hints for dry scalp. I didn't relaise this was a problem for so many. Selson Blue and Neutrogena T Gel were a couple the people suggested. I have started to try Paul Mitchell Tea Tree. It seems to be helping. Thanks Donna (14) ===== Zygo Lightwriter Model SL-35 ========== Date : Fri, 02 Mar 2001 Subject: Zygo Lightwriter model SL-35 >From : Nancy Chesler I am attempting to sell the Zygo Lightwriter that was used by my husband when he lost the use of his voice. This model has a double screen, so that if the person wishes to type something in, but not activate the voice, the person that you are trying to communicate with can read the screen that faces them. There are several choices for voices, both male and female. It also has capabilities for computer connection. It was used for about 5 months, is in A-1 condition. It retails for about $4000. I am willing to sell it for $2800. If anyone is interested, please contact me at vnches@uswest.net or call me at 503-625-2606. This device greatly enhanced Vic's quality of life. I hope it can serve someone else's needs, too. Nancy Chesler (15) ===== evidence for potential therapeutic effect ========== Date : Fri, 30 Mar 2001 >From : Will Hubben Subject: evidence for potential therapeutic effects of copper chelators : and lipoic acid in the treatment of ALS >From Phil Horgan; Effects of an Inhibitor of Poly(ADP-Ribose) Polymerase, Desmethylselegiline, Trientine, and Lipoic Acid in Transgenic ALS Mice. Andreassen OA, Dedeoglu A, Friedlich A, Ferrante KL, Hughes D, Szabo C, Beal MF. Neurochemistry Laboratory, Massachusetts General Hospital, Boston, Massachusetts, 02114 The development of transgenic mouse models of amyotrophic lateral sclerosis (ALS) allows the testing of neuroprotective agents. We evaluated the effects of five agents in transgenic mice with the G93A Cu,Zn superoxide dismutase mutation. A novel inhibitor of poly(ADP-ribose) polymerase showed no effects on survival. Desmethylselegiline and CGP3466 are agents that exert antiapoptotic effects in vitro by preventing nuclear translocation of glyceraldehyde-3-phosphate dehydrogenase. They had no significant effects on survival in the G93A mice. Trientine, a copper chelator, produced a modest significant increase in survival. Similarly administration of lipoic acid in the diet produced a significant improvement in survival. These results therefore provide evidence for potential therapeutic effects of copper chelators and lipoic acid in the treatment of ALS. Copyright 2001 Academic Press. PMID: 11259130 (16) ===== ALS PINpoint POLL ALERT ========== >From : Alspinpoint@aol.com Date : Fri, 2 Mar 2001 Subject: ALS PINpoint POLL ALERT ALS PINpoint POLL ALERT HAVEN'T PARTICIPATED YET? For complete details, go to: http://members.aol.com/alspinpoint/index.html FOR THE LATEST POLL RESULTS, go to: http://members.aol.com/alspinpoint/results.html THANK YOU! (17) ===== protein Bax appears to be key factor ========== Date : Wed, 21 Feb 2001 >From : Will Hubben Subject: protein Bax appears to be a key factor in neurodegenerative : changes seen in a mouse model of Parkinson's disease WESTPORT, CT (Reuters Health) Feb 20 - The pro-apoptotic intracellular protein Bax appears to be a key factor in neurodegenerative changes seen in a mouse model of Parkinson's disease, reports a team of investigators from the US and Israel. Based on their findings, the researchers suggest that Bax could be a target in the treatment of Parkinson's disease. Dr. Serge Przedborski, of Columbia University, in New York, and colleagues conducted a series of experiments in which they injected mice with the neurotoxin 1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine (MPTP) to induce dopaminergic neurodegeneration in the substantia nigra pars compacta, similar to that seen in Parkinson's disease. On Western blot analysis of tissue proteins, Bax expression was increased in the ventral midbrain compared with mice injected with saline, while reverse transcriptase polymerase chain reaction showed increased Bax mRNA. At the same time, ventral midbrain Bcl-2 protein levels were markedly reduced. As reported online in the Proceedings of the National Academy of Sciences Early Edition for February 13, the researchers also found that "mutant mice lacking Bax are significantly more resistant to MPTP than their wild-type littermates." "These findings suggest that the finely tuned balance between cell death agonists, such as Bax, and cell death antagonists, such as Bcl-2, is upset in the ventral midbrain" in MPTP-induced dopaminergic neurodegeneration, Dr. Przedborski's group concludes. "Whether blocking events downstream of Bax also can protect these cells remains to be determined," the investigators add. Proc Natl Acad Sci USA. 2001; doc 6339 http://www.pnas.org/cgi/content/abstract/051633998v1 (18) ===== re: HMO and quality of care ========== >From : "Mike Baribeau" Subject: RE: Date : Fri, 16 Feb 2001 >But Dr. Oppenheimer does not attempt to evaluate my article (it appears >he hasn't read it). Instead he argues that it is "less than useful" to >compare the quality of HMOs as a class with the quality of traditional >health insurers as a class. He doesn't explain why this comparison is >"less than useful." Kip Sullivan Kip, I think that it might be helpful if you were to post your article somewhere were we can all read it. There are some abstracts from the July 1999 issue are on the Web but yours is not one of them. I would very much like to know more about the sources and any biases of the studies you referenced. Remember, HMOs and PPOs use their market clout to forcefully negotiate lower prices with doctors, hospitals, clinics and others in the medical system so these sources or the "comparative studies" which they have funded are not always totally objective in what they say about the plans. Something else to keep in mind is that HMOs and PPOs started coming into prominence 10 or 15 years ago because of market demand for them. Several years of double digit cost increases in conventional insurance plans were causing employers to drop medical insurance plans completely. Individually funded plan prices were escalating beyond personal affordability. Conventional or indemnity medical plans were and are still available for those who want them. Many of the cost controls implemented by HMOs were sorely needed to prevent abuse and money wasted on unneeded tests or bogus treatments. Many examples of those kinds of money wasters are apparent in postings right here (for example, if someone wants wet cell treatment they should have it but I don't want it paid by my group insurance plan so that I share the cost). Remember, anyone can always decide to pay for whatever tests and treatment they want if their insurance excludes coverage. Obviously, it is a lot easier for us to spend money when it's not coming out of our own pocket. Insurance programs and the medical system are not perfect but in my humble opinion, to be truly screwed up, we need government involvement like so many other "government programs". I would submit that ultimately the best "regulator" of any product or service is the consumer and the market forces. My premise in the original posting, was to simply state that medical care is, in my opinion, a personal responsibility and not something we should be looking for from the government. Of course medical care will not be equal just as not everyone has equal housing, drives the same quality car, or enjoys the same vacations. Some will also choose to spend their money on things other than their medical insurance which of course should be their choice but then they have to live with the consequences. And yes, there is still a great need for private charity for the truly deserving but not the wasteful "government charity" which we are all so familiar with and which some have chosen to become dependent on. === end of alsd 831 ===