=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #852 (13 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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: pain and discomfort 2 .. "Brick by Brick" May Edition 3 .. trying to swallow pills 4 .. re: Side effects with Rilutek ans Alcohol 5 .. re: alcohol with riluzole 6 .. sample letter from my Dad 7 .. free reading material 8 .. Hello Friends 9 .. ISAAC Awards Application Information 10 . re: ALS Chat Rooms (ALSD847) (1) ===== re: pain and discomfort ========== >From : Warriorwheels@aol.com Date : Tue, 1 May 2001 Subject: Re: pain levels This is my first email. This is a good site despite the lack of entries from my United Kingdom fellows. Debra Martinez asked about pain levels and sadly despite the experts saying it is a pain free illness, it is not. I speak with experience, I am 46 and have had ALS for nearly four years mainly in my legs so far. In the early stages the cramps from the muscles were severe, they used to wake me at night. My doctor prescribed Quinine Sulphate which helped, also indian tonic water helps, but the taste is acquired. Now the muscles have gone the cramps have gone only to replaced by a numbing pain from sitting in a wheelchair, I have not yet found a cushion to alleviate this. The best relief is to be able to lie back in a more comfortable chair and distribute your weight evenly throughout your body for about 30 minutes every few hours. Another discomfort factor is digestion, although my eating and breathing are fine it takes much longer to process food than it used to. No one told me about this and after several stomach medicines I discovered my stomach was easier for eating less and eating earlier (say 5pm to 7pm). Poor circulation does cause one of my toes to swell and behave as if I had gout. I have not found any medicine that helps, again best treatment is feet up. Cold will be an issue and it can feel as if your bones have been deep frozen. I say all this because none of this was pointed out when I was diagnosed, I personally prefer honesty and these sort of things should be mentioned as soon as possible. John (warriorwheels@aol.com) (2) ===== "Brick by Brick" May Edition ========== >From : "ALS March of Faces" Subject: The May Edition of ALS March of Faces "Brick by Brick" is NOW : Available Date : Wed, 9 May 2001 Dear Readers, Don't forget: MAY IS ALS AWARENESS MONTH. This is your best opportunity to do something, anything to raise public awareness of ALS... JUST DO IT! You can view this month's issue by accessing our home page at: http://march-of-faces.org and click on the "Brick by Brick" Newsletter button. In This Month's Issue: ALS AWARENESS: BOBBI'S GREAT ADVENTURE - A ROAD TRIP TO CURE ALS ALS NEWS, RESEARCH AND INFORMATION: MOUSE EXPERIMENT SHOWS ENZYME INHIBITOR PROTECTS NEURONS GATEWAY TO CELL DEATH DEFINED INCREASED EXPRESSION OF COX-2 ENZYME IN ALS STEM CELLS FROM NASAL TISSUE PRIMARY LATERAL SCLEROSIS: FURTHER CLARIFICATION AXONAL REGENERATION MAY PAVE WAYS FOR REPAIR IN SPINAL CORD INJURY DIFFERENTIAL EXPRESSION OF 14 GENES DETECTED IN ALS CYCLOSPORIN PROLONGS SURVIVAL IN LATE-STAGE ALS MICE ACCUMULATION OF GALECTIN-1 APPEARS TO CAUSE DEGENERATION IN ALS INCREASED GLUTAMATE IN ALS SLOWED BY CREATINE HOMOZYGOUS DELETION MAY BE POSSIBLE PROGNOSTIC FACTOR MRI RESEARCH EXPANDED TO INCREASE CONFIDENCE IN ALS DIAGNOSIS COCHRANE REVIEW: RILUZOLE PROLONGS SURVIVAL CONFIRMED ALS FUNDRAISING AND EVENTS: PAMPERED CHEF FUNDRAISER DEADLINE EXTENDED! QUARTER MILLION WON FOR PROJECT ALS ON "WHO WANTS TO BE A MILLIONAIRE" LES TURNER ALS FOUNDAITON - TAG DAYS IN MAY COLUMNS & REGULAR FEATURES: The View From Here from PALS Nina Neudorfer Caregiver's Corner-A message from PALS Steve Fowler NEW!!! INSIDE LOOKING OUT-poetic ponderances from PALS, hosted by PALS Marc Herman Ravings from Down Yonder from PALS Jesse Bullock Can't Walk or Talk but Can Always Laugh from PALS Glenn Harwood Meet the PALS: co-founder of ALS March of Faces PALS Kyle Hahn Where in the World Are You? The ALS March of Faces Banner Calendar (3) ===== trying to swallow pills ========== >From : SoapFlower@aol.com Date : Sat, 12 May 2001 Subject: Re: I have always had a "gag" complex when trying to swallow pills. I am wondering what others use if they crush vitamins and supplements. Thanks. (4) ===== re: Side effects with Rilutek and Alcohol ========== Date : Sat, 12 May 2001 >From : Susan Staton Subject: Re: Side effects with Rilutek and Alcohol I looked up Rilutek in Mosby's 2000 Drug Reference and I did not see any contraindications with drinking a glass of wine while taking Rilutek. Although, you should take it 1 hour before or 2 hours after a meal to help with absorption of the drug. Susan, BSN (5) ===== re: alcohol with riluzole ========== Date : Sat, 12 May 2001 Subject: alcohol with riluzole >From : "Genevieve Kierans" I have been told variously you can and you cannot occasionally take alcohol with Riluzole. I have been taking both for 3+ years. I'm none the worse for wear. I am guessing the reason some people say not is because both can affect the liver adversely. Riluzole also makes you drowsy, as does alcohol, so it could be a potentially dangerous situation if you are impaired physically. My credo: balance and moderation in all things. Just because you are supposedly "dying" doesn't mean you have to stop living. Good luck! Genevieve Kierans Kierans Communications 183 Gainsborough Rd Toronto, Ontario M4L-3C5 416-461-0358/f.416-461-3950/cell: 416-994-4944 gkierans@attcanada.ca (6) ===== sample letter from my Dad ========== Date : Thu, 10 May 2001 >From : M Harrold Subject: sample letter from my Dad Dear PALS, CALS, GALS and GUYS: I am taking the liberty of circulating my Dad's letter that was mailed directly to a list of VIPs in Washington. I send it only as a guide (please be original) -- a formal letter with your name atop (for a reply, of course) and the proper heading to the congressman/senator. Write your letter and send a copy to each Senator, and 1 to your representative. You will need to know your Representative's name and can use the below link to find out his contact info. Don't forget Bush & Chaney. I remember George talked about "accountability" in his speeches. The list below has names and addresses of pertinent officials. If needed, use the link to find other addresses : http://www.house.gov/house/MemberWWW.html For senators: http://www.senate.gov/ President & Mrs., VP and Mrs.: http://www.whitehouse.gov/contact/ For example, my contacts are; Congressman E. Clay Shaw Jr. 2408 Rayburn House Office Building Washington D.C. 20515 202-225-3026 Congressman Robert Wexler 213 Cannon House Office Building Washington, DC 20515 (202) 225-3001 (202) 225-5974 FAX Honorable Bob Graham 524 Hart Senate Office Building Washington, D.C. 20510 Phone (202) 224-3041 -- TDD (202) 224-5621 -- Fax (202) 224-2237 The Honorable Bill Nelson United States Senate Washington, D.C. 20510 (202) 224-5274 It is best to keep it to one page, but not mandatory. ================ Your Name 8325 Your Street Your Town, FL 33333 5/02/2001 THE HONORABLE BOB GRAHAM UNITED STATES SENATE WASHINGTON, D.C. 20510 Dear Senator Graham: I am writing to ask if you will lend your support for an effort to increase the amount of Federal funding allocated by the NIH for ALS (Lou Gehrig's disease) research. This devastating tragedy is visited upon some 5,000 new victims each year. Since it was recognized in the 1860's this fatal disorder has targeted men and women mostly in there forties and without regard for other health problems or station in life. Gradually, muscle by muscle, strength is lost throughout the body until vital functions except for the brain, shut down. Thus 5,000 families watch helplessly as their loved one is stolen from them an inch at a time. To date, funds obtained from private sources have waged a fight to find the cause and find a therapy leading to a cure or a halt to the relentless progression of ALS. Pharmaceutical companies do not apparently regard ALS research as a revenue-producing endeavor. I realize that this view is shared by those in charge of programs at NIH who I am sure are heavily lobbied by the drug companies to provide assistance in areas such as AIDS, and Alzheimer's etc. However, we must turn to you and your colleagues to ask that you move to provide a fair share of funding to find ways to stop the tragic loss of some of our brightest and best, cut down in their prime. I am taking the liberty of enclosing a photograph of my granddaughter, Elliana Marie, born two weeks after my son received his confirmed diagnosis of Bulbar ALS. Elli will never feel the joy of being plucked from her crib by her father; never share her third birthday cake; never have Daddy to guide her bicycle, or help with her homework. He will be, for her, a picture on the wall and some stories to remind her of what might have been. Our family will devote all our time and financial wherewithal to cope with the expense and emotional toll. We think of the new victims and ask if, ten years from now, will we still be at square one in combating ALS? Without your help it doesn't seem like we will have the answer. Sincerely, Your Name (7) ===== free reading material? ========== >From : AWMORRIS1@aol.com Date : Wed, 9 May 2001 Subject: Re: Sometime ago a subscriber to the digest mentioned a website where free reading material could be found, does anyone know where? Please reply to awmorris1@aol.com Keep smiling Andrew Morris (8) ===== Hello Friends ========== >From : "lance" Subject: Hello Friends Date : Wed, 9 May 2001 Hello everyone, I've been reading this digest for years now! I enjoy every issue on peoples mind's. Currently I'm going through a tragedy worse then even our diagnosses. The State of Washington is messing with my ability to stay with my caregiver. I was diagnosed in 1990 I was 27yrs old at the time, this illness seem's to have no age limits. I've lived here for almost eight years now and during that time I fell in love with my caregiver. Apparently DSHS is now saying there is a law against us having a relationship. Because of that law they're making me leave the one place I've felt so secure. As we've traveled around looking for a suitable place for me I've been frightened of the possibilities. I saw the scariest nursing home ever and most Adult Family Homes have not been suitable for the state because they seem to think I need a nurse on staff. Even though I'm breathing on my own, eating regular foods and am very stable, they think I need a nurse. I recently recovered from a bought pneumonia and the hospital sent me home with a by-pap machine and a suction divise which I never use. The doctors thought I may have to start useing a by-pap since my lungs weren't expanding much do to all the fluids. But since I've been home I haven't needed them. My caregiver was told at that time that she wasn't suppossed to allow me to be in her home because of those machines. They then told us both that if I remained in her home that they could file sexual abuse charges on her. Even though we've both told them that we don't really have sex anymore, even if we did there isn't anything wrong with our ability of that in the first place. I'm writing just to mention all the abuse that is happening in our lives, and are so very few homes that never gets heard of because of love and compation. The government never looks for positive aspects and that is so SAD. Thanks to all of you out there keeping hope alive forever friend lance (9) ===== ISAAC Awards 2001 Application Information ========== >From : Dasroster@aol.com Date : Thu, 3 May 2001 Subject: Isaac Awards 2001 Application Information Isaac Awards 2001 Application Information ISAAC (The International Society For Augmentative and Alternative Communication) is an organization devoted to advancing the field of Augmentative and Alternative communication (AAC). Formed in 1983, ISAAC now has over 2,800 members in more than 50 countries, including 11 national/regional Chapters in Canada, Denmark, Finland, German Speaking Countries, Ireland, Israel, The Netherlands-Flanders, Norway, Sweden, United Kingdom and the USA. Membership is open to all persons who are interested in AAC. The Mission of ISAAC is to improve communication and the quality of life for people with severe communication impairments. ISAAC does this by advancing the field of AAC, facilitating information exchange and focusing attention on work in the field. For more information on ISAAC, visit the ISAAC website at: http://www.isaac-online.org Words+ has had the privilege for a good many years to partner with Isaac (The International Society for Augmentative & Alternative Communication) in their biennial conference: ------------------------------------------------------------------------- The Words+/ISAAC Awards The Words+ Outstanding Consumer Lecture Award recognizes an outstanding AAC consumer who then addresses the Biennial conference. The Words+ Consumer Scholarship provides financial assistance over two years to consumers to enable them to obtain post-secondary education or training. WORDS+/Consumer/User Scholarship Awards provide US$2000 per year for two years, which must be used for post secondary education or training. Applicants must be AAC device users who are ISAAC members. Applications must include: 1. a 300-500 word essay focusing in the applicant's educational plans and a two year time line 2. the name of the institution which the applicant will attend 3. the cost of attending the institution 4. two letters of recommendation. For anyone interested in becoming an ISAAC member, please visit the ISAAC website at: www.isaac-online.org. For ISAAC members who would like to apply for these or other ISAAC awards, please send requests for information packets and applications to the ISAAC Secretariat: 49 The Donway West, Suite 308 Toronto, Ontario M3C 3M9 Canada TEL: (416) 385-0351 FAX: (416) 385-0352 E-M: secretariat@isaac-online.org URL: www.isaac-online.org (10) ===== re: ALS Chat Rooms (ALSD847) ========== >From : "MDA" Subject: ALS Chat Rooms [#847] Date : Thu, 3 May 2001 The ALS Division-MDA Web site welcomes ALS chatters and new ALS chat groups at http://als.mdausa.org/chat/index.cfm: THE ALS CHAT PAGE a feature of the MDAchat service Mark your calendar for May 17, 2001 The ALS Chat Group from Connecticut will debut Thursday, May 17 at 1:00 PM Eastern. Hosted by local MDA/ALS Task Force on Public Awareness member, Dave Dgals and MDA Health Care Services Coordinator, Elissa Woof, this monthly, 90-minute chat session will promote a wide ranging discussion about ALS and how MDA can help. The MDA Research Conference Series begins on May 17 at 9:30 PM Eastern. Each month, MDA Director of Research Development, Sharon Hesterlee, Ph.D., will lead 90 minutes of online discussion about neuromuscular research. This months research focus is ALS! Coming soon! David Jayne agrees to host and launch an ALS chat. David is a long-time advocate of issues important to people with ALS and the force behind new federal measures to expand on a recent loosening the so-called Medicare Homebound Law. Read more about David in the new issue of The ALS Newsletter (http://www.mdausa.org/publications/als/als6_2.html) and look for details about his exciting new chat shortly. Coming this fall! Bob Ross, MDA Senior Vice President and Executive Director, has invited the directors of the 22 MDA/ALS research and clinical centers (http://www.mdausa.org/clinics/alsserv.html) across the country to participate in a series of online discussions with people affected by ALS and ALS and their friends, families and caregivers. Topics will range from research and clinical trials to concerns of everyday living. Recruiting Hosts for New ALS Chats If you are a person affected by ALS or a friend, family member or caregiver of someone who is, we urge you to become an ALS chat host. New ALS chat discussion-support groups are being formed NOW. Please consider hosting and send us a New Chat Group Application at http://www.mdausa.org/chat/app.html to initiate the process. Register in Advance Please register with MDAchat (one-time at no cost, http://database.azstarnet.com/html/mda/mdachat1.html) to participate in the chat sessions described above and all future chats and online conferences. You will immediately receive an access password via e-mail your ticket to login to exciting online interactive discussion. More information about MDAchat is available: * The complete MDAchat Calendar at http://www.mdausa.org/chat/calendar.html * Frequently Asked Questions (FAQ) at http://www.mdausa.org/chat/faq.html Tom Bush MDAchat Administrator MDA National Headquarters === end of alsd 852 ===