=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #828 (28 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Gene Chip Studies May Shed Light on ALS 2 .. Implementation of Medicare Waiver 3 .. re: Breathing problems when I inhale (ALSD825) 4 .. Support Groups in Washington 5 .. Grape Seed Extract 6 .. video documenting damage from mercury exposure 7 .. acronyms 8 .. re: Question re Sony Playstation 9 .. re: Medicare confusion 10 . Accessible Van Rental (1) ===== Gene Chip Studies May Shed Light on ALS ========== >From : "Hope for ALS" Subject: press release March 28, 2001 - gene chip studies on ALS Date : Wed, 28 Mar 2001 Press Release Hope for ALS Gene Chip Studies May Shed Light on ALS Disease Mechanisms HOUSTON - March 28, 2001 - Hope for ALS has contributed $ 36,000 in support of investigations at Brigham and Women's Hospital and Harvard Medical School using gene chip array techniques to identify those genes associated with the disease process operating in sporadic ALS (sALS). This is a continuation of earlier research conducted at Harvard by Robert Brown M.D., Steven Gullans, PHD, and Fernando Dangond, M.D. of the medical faculty. This work attempted to identify ALS-associated genes based on a comparison of genes activated in motor neuron tissue from ALS patients with tissue from control subjects not suffering from ALS. Present investigations by Dr. Dangond extend the study to the identification of ALS-associated genes in sALS patient blood. Information about the genes activated in sALS patient blood will help determine the nature of disease mechanisms that may be operating in the body as a whole and not just those events localized to diseased motor neuron tissue. Insights might also enable the development of early diagnostic blood tests for sALS. Sporadic ALS is a complex disease involving interactions between many systems. A diverse array of effects have been found to be associated with the disease process including glutamate transporter deficiencies, products of oxidative stress, interference with cell metabolic functions and activation of apoptosis which is the process of nerve cell self- destruction. No unifying theory to explain this range of effects has yet been promulgated. Recent advances in DNA technology have afforded techniques that permit one to examine the events that occur in sALS diseased tissue in a more inclusive manner. By studying the genes that control various biological functions, one can learn which of those functions are involved in sALS. "Gene chip DNA microarrays" allow one to simultaneously identify the genes that are expressed in a given tissue which enables one to discern the full spectrum of events operating in the disease process. Thousands of genes can be screened for activation at a single time. The resulting "snapshot" view of the processes going on as ALS destroys the motor neurons can tell us which processes are implicated, thereby narrowing the field of possible study. Results to-date suggest that glutamate transport, oxidative damage and cell self-destruction processes, among others, may be affected in the course of the disease. A manuscript reviewing these results in detail is currently in preparation for publication. It is expected that planned investigations with sALS patient blood samples will reveal what general processes might also be involved such as the body's inflammatory response to the nerve damage. If clear markers for the disease are found in the blood, it may be possible to diagnose the disease at a much earlier point than is currently possible based on the appearance of gross symptoms. Earlier application of beneficial therapies might afford more pronounced results for ALS patients than are currently observed in ALS patients in the advanced stages of the disease. Hope for ALS (501 C 3 tax exempt) 7822 Santa Elena, Suite 100 Houston, Texas 77061=20 713-643-2898 - office 509-351-8625 - fax www.hopeforALS.org Tax Id: 52-2137799 (2) ===== Implementation of Medicare Waiver ========== >From : "Dean Karnoski" Subject: Implementation of Medicare Waiver Date : Wed, 28 Mar 2001 NEWS FROM ALSA Implementation of Medicare WaiverAdvocacy Update #2 March 28, 2001 The Health Care Financing Administration (HCFA) has confirmed that as of July 1, 2001, ALS patients will no longer have to wait 24-months for Medicare benefits. As you know, this is due to the historic legislation that was passed by the 106th Congress and signed into law by President Clinton. HCFA notified The ALS Association (ALSA) that due to the straightforwardness of the bill and a prior precedent, no comment period would be necessary. HCFA is currently notifying each Social Security Administration Office of this new law. HCFA has also identified 1,360 persons with ALS that on July 1, 2001 will be entitled to Medicare benefits. A letter in mid-June will notify these individuals that they will be eligible July 1. This letter will serve as the patients official verification to their provider until their Medicare Card is received in mid-August. Because of computerized processing, 260 of the 1,360 people with ALS eligible on July 1 will receive notice this spring of an effective Medicare date. Please be aware that this information is now superceded by the ALS Medicare Waiver. It is not possible to halt the HCFA package mailing to these 260 people. However these 260 individuals will receive a second letter notifying them to disregard this package and follow the instructions of their June letter. While there has been interest in an earlier start date for this new law, HCFA is bound by the statuary language that Congress passed which states July 1, 2001 as the start date. In the future, when a person with ALS is approved for Social Security benefits (which still takes 5 months after meeting the criteria for disability), it will also include Medicare benefits. As the implementation date draws closer, The ALS Association will provide you with more specific dates and talking points. We have all worked hard for more than three years to achieve this goal. It is now vitally important that we get the word out. As always if there are any questions, please call ALSA's Office for Government Relations and Public Affairs, toll-free at 1-877-444-ALSA. Thank you for your continued assistance and patience with this matter. PLEASE NOTE: While we encourage everyone to use this memo to provide information to as many ALS patients and families as possible, we ask that you duplicate and distribute this memo in its entirety, with no deletions or additions. (3) ===== re: Breathing problems when I inhale (ALSD825) ========== Date : Mon, 26 Mar 2001 >From : "Edward Anthony Oppenheimer, MD" Subject: ALSD 825 (10) Breathing problems when I inhale Dear Dave Gilman, When I read your comments the following thoughts came to mind. You may want to discuss these with your doctor to see what would be best for you. When ALS impairs the bulbar motor neuron function the muscles, in the pharynx and upper airway, ...they often do not coordinate properly, become weak and lack their normal tone. The result may be difficulties with swallowing, speech and with air flow into the upper airway. When you exhale the airflow actually pushes the tissues in the upper airways, in the back of the throat, further apart, increasing the opening. The airflow problem occurs mostly when you inhale since the sucking-in effort of inhaling brings some of the tissues closer together giving that fluttering sensation. It could even give a momentary sensation of air being blocked or cut off. These problems are often much worse at night during sleep, and can result in low oxygen saturation levels. As long as it is minimal, you might be inclined to ignore it. However it may be a signal that action is needed. One approach, depending on your physician's advice, would be to check your breathing muscle function with tests such as: <> Vital capacity (sitting up and lying down) <> Maximal inspiratory and expiratory force (MIF and MEF) <> a flow-volume loop which would identify a typical saw tooth pattern during inhalation corresponding to the fluttering sensation you have <> Peak flow and peak cough flow <> overnight oxygen saturation (Nocturnal oximetry) These are rather simple tests to do, and if there are abnormalities then you should consider learning how to use one of the bilevel noninvasive ventilators at home (such as the BiPAP -- but there are many other brands available today). There are some days when your problem is probably worse, and other times it is better. The pulmonary function test will be most useful when done on a "bad day" - and may need to be repeated if it turns out you are scheduled when you are at your best function. A bilevel noninvasive ventilator can be used at night, or only when you feel the need, and then you would breathe on your own the rest of the time (without using equipment). Learning how to use this assistive equipment will give you freedom and protection. And, you will find out, by actually trying it, whether it is good for you. It may take a few weeks to learn and become comfortable with the technique. The attachments available, nasal mask, nasal pillows, full face mask or mouthpiece -- need to be fitted and adjusted properly for you by a respiratory therapist with experience doing this (someone who takes the time initially and does follow-up re-check visits; someone who is caring and concerned). If you get a "simple respiratory infection, a cold" and you know how to you this equipment, it could make all the difference between doing well and requiring hospitalization. Some of these body signals, such as you mention, are a "heads up" to warn you to do something now so you stay safe and maintain the greatest level of independence possible. With all best wishes, Edward Anthony Oppenheimer, MD, FCCP Pulmonary Medicine, Los Angeles Email: Eaopp@UCLA.edu >I was diagnosed with Motor Neurone Disease last year. From reading >various emails in the bulletin, what I have appears to be known as >Bulbar ALS as it affects mainly my speech. In recent weeks I have >found that when I inhale I get a sort of fluttering in my chest. When >I exhale I do not appear to have this problem. My doctor checked my >chest and agreed that there was unusual movement when I inhaled. > >I do not know whether this is the onset of breathing difficulties or >whether it is just a nervous reaction to the disease. Has anybody >experienced similar problems and can anyone tell me how breathing >problems usually start? Thank you Dave Gilman (4) ===== Support Groups in Washington ========== >From : "mrenn" Subject: Support Groups in Washington Date : Wed, 28 Mar 2001 Mary Renn, MPT Patient Services Coordinator The ALS Association Evergreen Chapter maryrennpsc@alsa-ec.org The ALS Association Evergreen Chapter provides 5 monthly support groups in Western Washington Caregiver Support Group Second Saturday 9:30-11:30am Highland Community Center, Bellevue Kent Support Group Second Sunday 4:00-6:00pm Kent Covenant Church Peninsula Support Group Second Tuesday 6:00-8:00pm Tri-Area Community Center, Chimacum Everett Support Group Third Wednesday 6:30-8:30pm Providence Everett Medical Center, Pacific Campus Bellevue Support Group Fourth Thursday 6:30-8:30pm Highland Community Center, Bellevue Please contact the Evergreen Chapter of the ALS Association for further information at info@alsa-ec.org or 425-656-1650. (5) ===== Grape Seed Extract ========== Date : Mon, 26 Mar 2001 >From : Will Hubben Subject: Grape Seed extract proves a potent antioxidant Grape Seed extract proves a potent antioxidant By Nancy A. Melville, Health Scout Reporter SUNDAY, March 18 (HealthScout) -- One of the best sources for the ever- important antioxidants your body needs can be found in tiny grape seeds. Grape seed extract, in fact, appears to be a more potent antioxidant than such super-industrial mainstream vitamins as C, E and beta- carotene, says a new study. The study, presented at last month's meeting of the International Chemical Congress of Pacific Basin Societies in Honolulu, finds that grape seed extract contains compounds that protect the brain, spinal cord, heart, kidney and lungs. Previous research has shown that grape seed extract also can improve circulatory problems and reduce the effects of the eye disorder known as macular degeneration, the leading cause of blindness in the world. Mary Beth Augustine, a registered dietitian and faculty member at the Beth Israel Center for Health and Healing in New York City, says you can reap the benefits of grape seed extract by taking 50 milligrams a day. But unless you're a true grape nut, getting the benefits from the fruit itself may be a challenge. "You'd have to eat 1 to 2 pounds of grapes to get the amount of extract necessary to be beneficial," Augustine says. She says the specific beneficial properties in grape seed extract, called proanthocyanidins, are not just found in grapes. "There are proanthocyanidins naturally occurring in many fruits and vegetables; however, grape seeds are exceptionally high sources of this," she says. Tammy Baker, a spokesperson for the American Dietetic Association, says the extract offers a number of benefits and is considered safe in moderate amounts. "In addition to improving circulation and retinal problems, grape seed extract has been recognized as having anti-inflammatory properties," she says. "There have been some animal studies showing liver toxicity in very high doses, but the levels sold as supplements are considered to be safe," Baker says. To get enough antioxidants, however, Baker says nothing beats good nutrition. "Your best bet is to make sure to get a variety of foods, balanced diet and everything in moderation." (6) ===== video documenting damage from mercury exposure ========== >From : Bernie Windham Subject: video documenting the type of damage seen in ALS and : Alzheimer's by low level mercury exposure Date : Wed, 28 Mar 2001 For a video documenting the kind of damage caused by mercury in ALS and Alzheimer's see the following Calgary Uinv. study: Hg & Nerve Growth Cones Retrograde degeneration of neurite membrane structural integrity of nerve growth cones following in vitro exposure to mercury: http://www.altcorp.com/hgnerves.htm (7) ===== acronyms ========== Date : Wed, 28 Mar 2001 >From : JTMoodSFO@aol.com Subject: Re: Please do not take this the wrong way, Dr. Oppenheimer, but the medical acronyms need definition for those of us who are lay persons not educated in medicine. To me, even though I was brought up by a Doctor and a Nurse, these acronyms are little more than alphabet soup. Warm regards to you and all on the list, John Mood >"... FVC reaches 50%, ... MIF ... MEF ..." >(Excerpt from Dr. Oppenheimer's note of 3/25/2001) (8) ===== re: Question re Sony Playstation ========== Date : Wed, 28 Mar 2001 >From : "DR. ING. SALVADOR PRECKLER" Subject: Question re Sony Playstation May be someone thinks I am silly, but the best thing that can possibly be done is to consult with the SONY COMPANY. This is a very powerful and prestiged enterprise and they may be more than willing to help in this matter. My second idea is to contact several school teachers and get them to challenge their pupils to find an answer to the problem. Most of the young people have playstations and the challenge might be welcome. Cordially, Salvador. (9) ===== re: Medicare confusion ========== >From : Dubin Alan P Aerospace Subject: RE: Medicare confusion Date : Wed, 28 Mar 2001 Dawn, Under current law, persons receiving Social Security Disability benefits (SSDI) are eligible for Medicare after 24 months on SSDI. The new law, which takes effect July 01, waives this 24-month waiting period for ALS pateints. But the requirement to be receiving SSDI remains. - Alan - >I am confused about the Medicare ruling that is to "kick in" this >summer. I am 63 and thought I would be covered. It seems I won't be >covered because I am not on SSDI. I thought it was for all of us with >ALS. Could someone explain. Thanks, Dawn Pratt (10) ===== Accessible Van Rental ========== >From : "Flippin, Susan" Subject: Accessible Van Rental Date : Tue, 13 Mar 2001 This is in response to the question about accessible van rentals. There is one company that I became aware of during the ALS symposium on March 10 in Las Vegas. It is called: Wheelchair Getaways. They have locations across the U.S., and the toll-free no. for national reservations is: 800-652-2042. Susan Flippin sflippin@pbsj.com === end of alsd 828 ===