=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #851 (12 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. re: Tahitian Nomi Juice? (ALSD850) 2 .. Dear Doctor ... 3 .. Father's Day Race in Rochester 4 .. Pat Pepper 5 .. "The Jenifer Estess Story" 6 .. re: Tahitian Nomi Juice? (ALSD850) 7 .. Synth SOD/catalase mimetics efficacy in ALS lab model 8 .. Calling all Cape Cod nurses! 9 .. Multifactorial rehabilitation treatment in ALS 10 . Side Effects? (1) ===== re: Tahitian Nomi Juice? ========== >From : "Jennifer Bathgate" Subject: re: Tahitian Nomi Juice? Date : Fri, 11 May 2001 >Jennifer, >Is there any chance you can re-send your note of yesterday. I want to >place it in the ALS digest, but it got badly messed up while I was >re-formatting it. Sincerely, Bob Broedel Bob, I didn't save it, but the gist was that people should beware of fantastic claims. From a nutritional standpoint, there are no known nutrients that can cause regeneration of muscle mass. Tahitian Noni juice has been touted for use by body builders, cancer patients, and other disease sufferers for it's pain relief, immunity building, and muscle enhancing capacities. However, these are personal reviews only and not scientific evidence. There are no scientific studies, that I know of, that study the true effects of Noni juice. I am a believer in many forms of alternative medicine, and the benefits that can be achieved by certain methodologies, but it boils down to the adage, "If it sounds too good to be true, it probably is". When I undertook an analysis of Noni juice several years ago (for a Masters level Nutrition course), I found the main ingredient to be blueberry juice. This is high in fiber and vitamin C, but probably not inducing all of the miracle cures that are suggested by some of its proponents. Also, the cost and recommended intake of this product are extremely prohibitive. I'm not saying that it's definitely not helpful, or that it definitely is. I just want to warn people about the claims that are sometimes leveled about different products. It's important to look at WHO is making the claims. While traditional science tends to be overly cautious in making claims and definitive statements about products or drugs, the general population often errs on the other extreme. Choose your products carefully. Jennifer R. Bathgate, MPH, LDN, RD Registered Dietitian (2) ===== Dear Doctor ... ========== >From : CheriNQ@aol.com Date : Wed, 18 Apr 2001 Subject: Re: Hello, I posted this on the Living-With-ALS site so I am sorry for those who may have already read it. I met with a person who was head of an ALS Center in a prominent teaching hospital and I felt I had to write a letter to "them" in response for the meeting. I wanted to share it for those who are in health care professions as well as those who have this condition. I hope it helps some. With love, Cher ******* Thank you for making time to meet with me last Thursday afternoon. I know you are very busy and that it is hard for you to meet with individual patients. I also appreciate the extensive resources that you gave me. I am sure I will make use of them and will keep them with my references for quick use. The book was especially interesting and uplifting. I wanted to take a moment to offer some advice that might help other patients like me. I was not clear with you about my agenda with regard to the meeting between us. Partly that was nervousness and partly because I am still uncomfortable with unfamiliar people when speaking with my "new voice." I wanted to find out what trials were in the plans and what research was going on currently. I also wanted to know what kind of therapy I should be working on right now. Though I do not have a firm diagnosis, I am trying to adjust in a positive way to what I have read in my extensive research about ALS as well as other Motor Neuron Diseases. You see, I feel that I am not my body. I am someone who lives inside this body and that someone is viable whether or not the shell within which I live is damaged. I feel that many severely handicapped and disabled people are productive and contribute to society. One only has to look at Dr. Stephen Hawking, Itzak Perlman, Christopher Reeve and others like them to realize the truth of this. In this age of youth and health, it isn't always easy to think this way, but I believe I have strong Biblical justification for my stance. I think God uses us in many ways. He used Moses as his spokesperson though he had a speech impediment. I have read about stem cell research and about other research going on across the world. It would be very hard in doing this research to avoid the worst of it. It hits you in the face - in fact, most health care professionals tend to concentrate on it, it seems. I think we are better served with a more positive, can-do and let's tackle this together attitude. I was hoping to join positively with you and the others at XXX to do what I can to help others and to work to find a cure by participating as a patient and possibly as a professional. I feel that maybe you had had a bad day before you met with me. It seemed that you were very discouraging and negative and it really caused a problem for me. I know it would for others as well, particularly those not as strong as I am. It is very hard in light of the tendency of health care folks and others to only concentrate on the negatives and the "lack of quality of life," to live as complete and productive a life as possible. You see, if I concentrate on the worst that can happen, then how can I live now? If I constantly worry about tomorrow, then how can I have a life now? If I am just to give up and accept my fate and not burden others, then what price is there on my being? What value have I as a person? I only have worth when my body is unbroken? That can't be true. When I asked about stem cell research, you said, "a few years ago it was XYZ and that didn't work out." Then you went on to say, "stem cell research just replaces cells, it doesn't stop the progress." Those things are true facts, no doubt, but when you take away a person's hope, you kill something valuable inside them. Never mistake a positive attitude for denial. It is not. It is just a way of living instead of dying. When you said, "whatever it is you have a burning desire for - do what you want to do now while you can," you are insinuating that my life is almost over and that is not true. There are many things more important in life than traveling or skydiving or whatever else a body can do. I can still help others even if I do turn out to have ALS. I can still matter. What you are saying is factual, but it doesn't help. It is something I can figure out for myself, but it doesn't help for a professional to tell me this. It just underscores the problem without offering any solution. When I said my husband and I were going to vent if necessary and work our way through this, you said, "you know it costs $150,000 to $300,000 and is very hard on the caregiver." Yes, I know the negatives - they hit you in the face from everywhere. But are you saying I am not worth $150,000 - my life is not worthy of that outlay? Are you saying that if I were not selfish, I'd just give up and die? That people with severe disabilities should just die because they are not worth anything? That is the way the words felt. There has to be hope. It is what causes people to do exceptional things and accomplish extraordinary tasks. We simply don't know what the mind can do and what place the emotional factor has in combatting disease and in recovery. I believe that with any disease, especially one like ALS, attitude is very very important. I am writing this out of love and caring. I hope you will take it the way I intend it. You touch a lot of lives. Please rethink your message. Whether or not my life has quality is not for others to judge. There are many things that make up quality - seeing the beauty of a sunrise, watching the birds feed, touching someone with a smile. We ALS folks are worth a lot and we can contribute and be productive and we deserve to live and live as happily as possible just like anyone else. We are not throw-away people. Please help others on your staff not treat us like we are. (3) ===== Father's Day Race in Rochester ========== >From : DGreen4156@aol.com Date : Sun, 6 May 2001 Subject: Re: We are holding a Father's Day race in Rochester, NY: June 17th, 2001. All proceeds will go to ALS-TDF in Boston where 100% of funds raised will be used for ALS research. Do you have friends who ask you what they can do for you? Have you thought to yourself: "Nothing: not really ----- except make a miracle happen." Actually you could suggest that they send a contribution into ALS-TDF. Here is their link: http://www.als-tdf.org ALS Therapy Development Foundation If anyone sends $250 or more, we will list them as official race sponsors. This means that we will print their name on our race t-shirt followed by (in honor of YOU) or (in memory of YOUR LOVED ONE who lost his battle with ALS). Last year TEAM ALS raised $180,000. Every cent of which went directly to ALS research scientists at The Harvard Institutes of Medicine. Please help us to help each other. Log onto our web site and click the link that says, "Medved's 5K Race to CURE ALS." Together Everyone Accomplishes More! Help us fight to CURE ALS. Sooner than later. Help us obtain race sponsors. ALS-TDF is a 501 c(3) charitable organization. All donations are fully tax-deductible. Race-t-shirts may be purchased for $14. each cost includes packaging and postage. http://www.geocities.com/teamals E-mail us at: TEAM ALS 2001 @aol.com If you would like to help out by purchasing a race t-shirt. Wear it on Father's Day. We would also appreciate any notes of encouragement. Some of us -- including jean green --- are pretty terrible runners. Others, including Dave Green, will be doing the l mile walk with his new Permobil electric wheelchair. Assuming he can still use his hands. We don't run to make the record books. We run to stay in this race. To CURE ALS. It is not easy. In fact it is really really hard. But anyone of you fighting ALS knows all about "really really hard," now, don't you? (4) ===== Pat Pepper ========== >From : Otzies@aol.com Date : Wed, 9 May 2001 Subject: Re: I'm curious if anyone has heard any further reports regarding Pat Pepper, former mayor of West Palm Beach. She was diagnosed with ALS in July of 1998 and later found out it was Lymes disease. She graduated from a wheelchair to a walker and was showing wonderful improvements. She had numerous negative Lymes disease tests prior to it showing up positive. Just wondering how she's doing? (5) ===== "The Jenifer Estess Story" ========== >From : ESCohn@aol.com Date : Thu, 10 May 2001 Subject: Giacomo set in CBS Estess Laura San Giacomo, Jane Kaczmarek and Annabella Sciorra will topline "The Jenifer Estess Story," a two-hour telefilm for CBS from Alliance Atlantis based on the true story of successful New York theater producer Jenifer Estess (Giacomo) and her two sisters, Valerie (Kaczmarek) and Meredith (Sciorra). In 1997, Estess was diagnosed with ALS, a little-studied and incurable motor neurological disease. Estess was given two to five years to live. She and her sisters then launched Project ALS, an effort to boost research and find a cure for the disease. Production on "Jenifer Estess" is scheduled to begin Monday in Toronto. (6) ===== re: Tahitian Nomi Juice? (ALSD850) ========== >From : Wisampson@cs.com Date : Fri, 11 May 2001 Subject: Re: > Have you heard about Tahitian Noni Juice? It repairs cells. Could it > help with ALS cell repair?? Tahitian Noni juice does not repair cells. The promoters just say it does. Because of the 1994 law limiting FDA's enforcement arms, supplement manufacturers may say almost anything they wish. Be careful what y'all believe out of what you read or are told. WSampson (7) ===== Synth SOD/catalase mimetics efficacy in ALS lab model ========== >From : Dasroster@aol.com Date : Fri, 11 May 2001 Subject: Synth SOD/catalase mimetics efficacy in ALS lab model Synthetic superoxide dismutase/catalase mimetics reduce oxidative stress and prolong survival in a mouse amyotrophic lateral sclerosis model. Jung C, Rong Y, Doctrow S, Baudry M, Malfroy B, Xu Z. Department of Biochemistry and Molecular Pharmacology, University of Massachusetts Medical School, 55 Lake Ave North, 01655, Worcester, MA, USA Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disorder that causes motoneuron degeneration, paralysis and death. Mutations in Cu, Zn superoxide dismutase (SOD1) are one cause of this disease. It is widely suspected that increased reactive oxidative species (ROS) is involved in motoneuron degeneration but whether such an involvement plays a role in ALS progression in vivo is uncertain. We treated mice expressing human mutant SOD1 G93A with EUK-8 and EUK-134, two synthetic SOD/catalase mimetics that have shown efficacy in several animal models of human diseases. These treatments reduced levels of oxidative stress and prolonged survival. The results suggest that oxidative stress plays an active role in ALS and illustrate the potential for treatment strategies aimed specifically against ROS. PMID: 11343826 [PubMed - in process] (8) ===== Calling all Cape Cod nurses! ========== Date : Fri, 11 May 2001 >From : Toni Diamond & Warren Schiffer Subject: Calling all Cape Cod nurses! I'm appealing to any nurses who live on, or near Cape Cod, MA. Please help me bring my wife home. What we are lacking, are licensed nurses to fill the hours that our insurance company is willing to cover. We have a severe nursing shortage in this area, and without nursing, my wife will be forced to remain hospitalized. Here are the facts; You must be a licensed nurse, have some familiarity with mechanical ventilation (will be trained by respiratory home care company), be willing to be hired by PSA, inc., and happy to help a very special person return to the place she wants to be. Any familiarity, or willingness to learn about ALS would be helpful. Please contact Norma Kraemer, Case Mgr. at PSA, inc. at this toll free number; 800 486 9870, and tell them you'd like to help Toni go home. Their website is www.psakids.com. Our sincere thanks, Warren & Toni (9) ===== Multifactorial rehabilitation treatment in ALS ========== >From : Dasroster@aol.com Date : Fri, 11 May 2001 Subject: Multifactorial rehabilitation treatment in ALS Neurol 2001 Mar 16;32(5):423-426 The importance of multifactorial rehabilitation treatment in amyotrophic lateral sclerosis Gomez Fernandez L, Calzada Sierra DJ. Laboratorio de EMG & EMT; Centro Internacional de Restauracion Neurologica (CIREN), La Habana, 11300, Cuba. lazaro@neubas.sld.cu INTRODUCTION. The treatment of amyotrophic lateral sclerosis (ALS) is still a major challenge. Rehabilitation treatment is scarcely considered and its usefulness in these patients continues to be controversial. PATIENTS AND METHODS. A multidisciplinary team made up of neurologists, physiotherapists, logopaedists, defectologists, psychologists and specialist physicians treated six patients with ALS in an intensive rehabilitation programme of 41 hours per week for four weeks. We follow certain basic principles in rehabilitation including: 1. Treatment by a multidisclipinary team; 2. Treatment tailored to the individual; 3. Avoidance of muscle fatigue and vigorous exercise, and 4. Intensive treatment with carefully measured amounts of different activities (logophoniatrics, occupational therapy, psychology, physical therapy, etc.) to avoid fatigue. The patients fulfilled the criteria of E1 Escorial for the diagnosis of definite ALS, and gave their informed consent to undergo the treatment. Forced Vital Capacity (FVC) and ALS Functional Rating Scale (ALSFRS) tests were done on all patients at the beginning and end of the treatment. The Wilcoxon test for paired series, comparing scores at the start and finish, were done in each case. RESULTS. In all patients the FVC and ALSFRS improved after the treatment. The results were statistically significant (Z: 2.2013; p= 0.027) on the Wilcoxon paired series test and no complications were seen. CONCLUSIONS.Intensive, multifactorial rehabilitation treatment for four weeks improved the FVC and ALSFRS in all patients with ALS and no complications were seen. Until there is a curative treatment for ALS, multifactorial rehabilitation remains the best hope for these patients. PMID: 11346822 [PubMed - as supplied by publisher] (10) ===== Side Effects? ========== >From : please reply to ALS Digest Subject: Side effects Date : Tue, 08 May 2001 About a week ago, my mother was diagnosed with als. She was given the new experimental drug, Riluzole to try and slow down the progression. I have a rather unusual question perhaps, but one I feel compelled to ask since no one here has been able to answer it. Can my mother consume alcohol while taking this drug? I'm talking simply about a glass of wine with supper, or a toast with champagne at an anniversary party. I'm not sure if this drug has any side effects, especially with alcohol. Thanks for your time. === end of alsd 851 ===