=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #816 (06 March 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Questions from Portugal 2 .. "STRIKING OUT" FOR ALS 3 .. e-mail addresses 4 .. My father can breath now 5 .. my good friend Robyn 6 .. Roho cushin for sale 7 .. re: Omega 972 and Topiramate 8 .. re: hereditary ALS 9 .. re: problems at home 10 . re: Ohio Waiver Program (ALSD809) 11 . re: heavy metals 12 . re: Treatment of ALS - What is the next step? 13 . re: Phrenic Nerve 14 . spoartic ALS study 15 . re: prostate cancer and ALS? (1) ===== Questions from Portugal ========== >From : Irina Carvalho Subject: Questions and Answers Date : Fri, 2 Mar 2001 18:15:11 -0000 Hello, My name is Irina and my mother as been diagonst with ALS in 20th February 2001. I have seen the e-mails and all the things that people in the ALS community talk and all the doughts. I don't no very well what to say because this has been a big surprise for me and my three brothers. I have been spending all of my time with my mother, I'm even going to live with her because I'm very scared with this situation. What I would like to know is at the beginnig of the ALS what is the most important thing I can do for my mother. How can I make this go away, or even how can I make her life the best. I'm sorry for my bad English but I hope we can make exchange experiences together. Irina ( in Portugal ) (2) ===== "STRIKING OUT" FOR ALS ========== >From : RSiblo@aol.com Date : Thu, 1 Mar 2001 17:42:54 EST Subject: "STRIKING OUT" FOR ALS "STRIKING OUT" FOR ALS As you know the American League and National League baseball seasons get underway in early April. Lou Gehrig, the "Iron Man", was one of the world's greatest athletes respected both on the field and off for his abilities, professionalism and character, in essence, the American hero and role model for youth and adults as well. What role has this professional baseball community played to obtain major monies for research? The Boston Red Sox have been active to initiate this financial support. It would be interesting to learn what other major league teams, have stepped "up to the plate and gone to bat" in a major way. Thank you for your response. Robert Siblo (703) 323-7073 Rsiblo@aol.com (3) ===== e-mail addresses ========== >From : "Moreno Portioli" Subject: e-mail addresses Date : Tue, 27 Feb 2001 16:50:58 +0100 Does anyone know the following e-mail addresses or mail addresses: Dr Ole Isacson of Harvard Medical School Dr Ronald McKay of NIH Dr Paul Sanberg of the University of South Florida in Tampa thanks moreno portioli ( in Italy ) (4) ===== My Father can breath now ========== >From : "PC Girl \(Lisa\)" Subject: My Father can breath now Date : Sun, 4 Mar 2001 10:48:31 -0500 Dear ALS Digest Members, This electronic board has been therapy and support for me and I want to thank everyone who has contributed and everyone who sits in front of their computer reading these words because someone they love has this awful disease. I am sad to report that my father passed away a week ago today, Sunday, at his home. Fortunately his wife, my mother, Gloria was by his side. He suffered much the last 6 months. He was using his BiPap 24 hours a day, except to get up and go the bathroom and while showering. Being stubborn, he would exhaust himself to get up and go to the bathroom and then come back to bed with almost no breath left in him. He never complained and had a most incredible attitude. We moved his stationary bicycle next to his bed and he rode it everyday with his BiPap on. He used light weights to exercise his arms as well. He still had strength in his arms and legs and believed his daily exercise (all his life) helped this last. He was Dx in April of 1999 but was misdiagnosed a year prior with Myasthenias Gravis (sp), Arthritis and other illnesses. He was the bravest man I've ever known. Although we knew this would come someday, we still didn't have enough time, enough "I love you's", enough sweet touches. I miss him so much, but am so glad he is not having any more trouble breathing. We were in the process of researching and discussing Trachs and other breathing alternatives. I do not know what he would have decided but we all thought we had time before having to make this decision. He had a DNR wish but was looking into respirator & other alternatives anyway. He had a feeding tube and this was the best. Before the feeding tube he was using up all his energy to consume enough calories and choking on his pureed food. I wish for everyone reading this to have faith that some how this suffering is not in vain. I pass along all my strength and courage that everyone reading this may get a little extra to help them endure. This Digest has been so important to me as I felt so alone before I found it. If I can be of assistance to anyone please feel free to email me. Lisa Zimmerman (pcgirl@adelphia.net) (5) ===== my good friend Robyn ========== Date : Sun, 4 Mar 2001 09:15:42 -0600 (CST) >From : beebopp@voyager.net Subject: Re I lost my good friend "Robyn's" e-mail address. Robyn - who lost her brother Curt - has been a godsend. Please write back to me at beebopp@voyager.net. Thank You! Holly (6) ===== Roho cushion for sale ========== >From : SheriBell@aol.com Date : Tue, 27 Feb 2001 19:32:18 EST Subject: Roho cushion for sale Hi everybody. We have a "Roho" cushion for sale. It is 16 3/4 X 16 3/4 inches. It really helped my Dad when he was confined to sitting. $150.00. My phone number is (714) 544-7447. We also have a "slider bathing system" which we are selling for $700.00. It is brand new. They sell for $1800.00. Please call if you are interested. Sheri Bellante (7) ===== re: Omega 972 and Topiramate ========== Date : Mon, 19 Feb 2001 08:43:20 -0800 >From : eric vanderhorst Subject: Omega 972 and Topiramate I had also taken Omega 972 and was part of a four month study group but decided to drop from it after 3 1/4 months. My progression did not slow and my fasciculations did not diminish (I was told they should). This was MY reaction to Omega 972 and am hoping others have fared better. I am also interested in taking Topiramate as explained in previous Digests. What dosage should one start with and how quick should it increase to the maximum? KEEP THE FAITH, PALS Eric PS: For those interested, Sylvia Browne, world famous phychic, predicts that in 2001, something will be found to put ALS, MS. ETC. into remission. Wouldn't that be something? (8) ===== re: hereditary ALS ========== >From : "Drakopoulos, Georgia (SPR MLIGS)" Subject: RE: Date : Wed, 28 Feb 2001 11:17:44 -0500 If I may add to Michael's question about hereditary ALS; is the initial onset of symptoms more likely to occur in lower extremities? Thank you (9) ===== re: problems at home ========== >From : BristolStomp@aol.com Date : Sun, 25 Feb 2001 15:38:22 EST Subject: Subject: problems at Home Not only can I sympathize with Harry Lyall's home situation as stated in the ALSD #810, he should scoot over and make room for me on his sinking boat. I have no one to talk to either. Here's my story. As if ALS isn't a heavy enough cross to bear, I am given the pleasure of dealing with two family member caregivers who think the little things I request (for comfort in a wheelchair 10 hours a day and 12 to 14 hours in bed) are picky and unnecessary and equated with my being a "spoiled child." I'm called a Pill, a Pest, a Pain and a Problem. How Perfectly Pleasant, isn't it? My desperate attempt to communicate is met by (1) "what" and constant repetition and NO attempt to get the spell chart out. I'm then left with not being able to say what I want/need to say, or, (2) being shouted at and told I have to speak better "than that". This caregiver shouts louder and louder the less he understands. In his mind, the more and louder he shouts, the clearer I'll speak. It that were the case, my speech would have been restored some time ago! This same caregiver watches me struggle, does nothing to help me, and asks me, "what's your problem?" Despite the routine being the same everyday, he plays dumb, asks the same questions of me everyday and hates when I answer his questions by saying, "Every day!". This man lacks interest, caring, compassion....you'd think I'm ill JUST to make HIS life miserable. Can you imagine?! Isn't this simply deLIGHTful?? (10) ===== re: Ohio Waiver Program (ALSD809) ========== Date : Tue, 20 Feb 2001 12:47:09 -0500 >From : "Elizabeth H." Subject: Re: ALSD809 6 Ohio Waiver Program I read this post with interest because it turns out I was given incomplete and wrong information by Medicaid personnel when I inquired about this service a couple months ago. (A service not a single professional person advised me of either.) I was told there was no list to get on to be called when funds became available and that the sign up would begin this July. In fact, there is one and that determines when you are considered. You call your county's welfare dept at any time to get on the list. Also, the name of the service is now Home Care Waiver, a combination of the old Waiver 4 and Waiver 5 for people under the age of 60. (Passport is the service for over 60s.) I think it is important to note that, as with Passport, even with a doubled income cap, one has to have a fairly low income to qualify for this. Betsy H. (11) ===== re: heavy metals ========== >From : "Ray Kinney" Subject: heavy metals Date : Fri, 23 Feb 2001 00:02:34 -0800 There have been numerous postings discounting the possibility of involvement of toxic effects of heavy metals in pathogenesis of ALS. When considering the current state of medical knowledge, and the incredible complexity of human physiology, it is readily apparent that we have a long way to go in understanding the interactions of factors involved with the multifactoral nature of disease. Even a cursory review of MEDLINE for the chronic low-dose effects of lead, mercury, or cadmium shows abundant possibility of these metals to be involved in both direct and indirect physiology that is intimately tied with neurotoxic effects. Any other conclusion seems incredibly naivete', from my reading of the literature, and it seems ill-advised to disregard the implications of this library of peer-reviewed information. Positive scientific 'truth' is not really science. Science is a dynamic evolving approximation of reality. Science is an evolving process of making the invisible visible; so that we can see more of the complexity of the beauty and, base our decision-making on that real beauty. Ray Kinney (12) ===== re: Treatment of ALS - What is the next step? ========== Date : Sun, 04 Mar 2001 12:12:32 -0600 >From : Wayne Crabtree Subject: Re: Treatment of ALS - What is the next step? This article and the one that followed it about riluzole was talking about antiglutamatergic strategies. I assume that means reducing the levels of glutamate, which is involved in neuron transmission in the brain. I was reading something about an area of the brain I had never heard of the other day, called the Amygdala. It apparently has a role in the effects emotions, stress, fears, etc have on the body. It apparently releases quite a few different hormones, etc, including glutamate when we experience these things. One place I was reading even mentioned obsessive-compulsive disorder as having some kind of effect that involves the Amygdala. And now I see in the digest that glutamate might have something to do with ALS. This was interesting to me, since my Dad had ALS. He died in 96. But he had a touch of the obsessive-compulsive stuff. Not really very bad, but he had to do things like check the stove several times before bedtime, touch some things a certain number of times and things like that. It never really was a problem. We all had a good laugh about it sometimes. But he grew up with lots of fears, anxiety, and such. Maybe this caused higher glutamate levels, and eventually caused ALS? Check out these websites on the amygdala: http://marlin.utmb.edu/~nkeele/ http://www.biopsychiatry.com/amygdala.html http://www.sfn.org/briefings/fear.html http://www.feedmag.com/brain/parts/ledoux.html Thanks for listening, Wayne. (13) ===== re: Phrenic Nerve ========== >From : "Maribeth Salge" Subject: Re: Date : Sat, 24 Feb 2001 12:53:38 -0500 Re: Phrenic Nerve The phrenic nerve is the nerve that supplies the impulses for contraction to the diaphragm. It is formed by spinal nerves C-3,4, and 5, hence the phrase "C-3, 4, and keep the diaphragm alive". Diaphragmatic action is what allows us to move air in and out of the lungs. I have heard of using an implantable electric stimulator for the diaphragm in cases of high cervical spinal cord damage, but I don't know how successful it has been, nor if there is any info on its use with ALS patients. I wondered about this possibility for my father, but was unable to learn much. Maribeth Salge, MA, PT, ATC, CSCS, RCEP (14) ===== sporatic ALS study ========== >From : BDrum7@aol.com Date : Sun, 4 Mar 2001 11:03:43 EST Subject: Hi Everyone, I'm writing this as a follow up to a posting that appeared in Digest #790. In that digest, Jamie Weissburg from the Les Turner ALS Foundation posted information about the sporadic ALS study that is ongoing at Northwestern Medical School in Chicago. I would like to personally encourage any of you who meet the criteria to consider taking part in this research effort. They are looking for PALS with sporadic ALS who have living parents and/or older siblings who do not have ALS. They need a blood sample (approx. 2 tablespoons) from each participant (PALS, parents, and siblings) and there is also a questionnaire that needs to be completed. I lost my husband to sporadic ALS in 1994. When I contacted his older brother about participating in this study, he had several valid concerns that I would like to address because I suspect that others may have the same questions. 1. Might he receive "bad news" as a result of his participation? The answer is no. Participants do not receive any results. They just become an important part of the research. 2. Would he need to go to Northwestern to have the blood drawn? Again, the answer is no. If you decide to participate, you will receive a kit that will have everything you'll need and you may have the blood drawn anywhere. You will also receive instructions and supplies for returning the samples via Federal Express without charge to you. 3. Will information learned from my blood sample be kept confidential? Yes, each family group will be assigned a number and will be identified by that number and not by name. If you would like more information on the study and how you can participate please contact either : Nailah Siddique, RN MSN or Mara Gaudette, MS (312) 503-2712 (312) 503-0154 nsiddique@nwu.edu m-gaudette@nwu.edu The more the researchers can learn about ALS, the better equipped they will be to figure out the cause(s) and, hopefully, to find the cure for this awful disease. I hope that you will consider becoming a part of this research effort. Take care Barb Drummond (15) ===== re: prostate cancer and ALS? ========== >From : Bernie Windham Subject: re: prostate cancer and ALS? Date : Fri, 23 Feb 2001 10:05:19 -0500 Dr. W Sampson MD writes: >There is no relationship between ALS and prostate cancer or ALS and >radiation. This is a ridiculous and unsupported assertion IMO. Where is the documentation for this claim? Who has documented this finding? Its very easy to document that the same factors that affect ALS also affect prostrate cancer and that radiation depresses the immune system, which promotes cancer and makes the conditions that cause ALS more significant. I could easily cite references if I thought there was a real issue here. There have been a lot of medical studies on the synergistic effect of mercury and radiation for example. Both depress the immune system and cause DNA/RNA damage and do so synergistically. B.W. >But that is also why we are often wrong. One can find discussions of >this problem in psychology and philosophy books. W.S. While its true that people discuss things that doesn't make the discussions useful or valid. A lot of people talk about a lot of things but don't know much about what they are talking about. But only a few can back up their talk with proof, clinical cases, documentation. I'd like to see a little more documentation in support of broad claims. We can deal with specifics then, to see what the research and experience support. Let's stick to Science rather than conjecture. B. Windham === end of alsd 816 ===