=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #847 (02 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. ALSA Announces Plans for ALS Awareness MonthÊ 2 .. New ALS Web Site Launched by MDA 3 .. ALS Awareness Night in Michigan 4 .. re: Cyberlink and MCTOS 5 .. "Who Wants To Be A Millionaire" 6 .. psuedo bulbar palsey 7 .. re: home care 8 .. chat rooms? 9 .. re: care giver cost 10 . re: ALS and pain (1) ===== ALSA Announces Plans for ALS Awareness Month ========== >From : ESCohn@aol.com Date : Tue, 1 May 2001 Subject: ALSA Announces Plans for ALS Awareness Month National Organization Dedicated to Fighting Lou Gehrigs disease supports The International Year of Volunteers 2001 By Recognizing the Efforts of Hometown Heroes May 1, 2001 May is ALS Awareness Month. The ALS Association (ALSA) announces a month-long series of activities created for May 2001 to raise awareness for amyotrophic lateral sclerosis, commonly referred to as Lou Gehrigs disease. The ALS Association is spearheading a national public awareness and advocacy campaign entitled Get Involved Make A Difference Give A Reason For Hope, designed to educate and advocate on behalf of the thousands of Americans faced with ALS today. In addition, The ALS Association, and its nationwide network of chapters have been designated organization partners for The International year of Volunteers 2001, promoting recognition for volunteer service within communities. For more information about ALSA's involvement in The International Year of Volunteers, visit www.iyv.org. In this, The International Year of Volunteers, The ALS Association (ALSA) recognizes the outstanding efforts of its volunteers across America who have helped raise awareness for the disease and generate funds for research to help find a cause and cure for ALS, stated Mike Havlicek, President of ALSA. The ALS Association is a volunteer-driven organization. Our volunteers are the lifeblood of our organization. Through their efforts to educate the public about ALS, these important volunteers are truly making a difference in the fight against ALS. The ALS Association will publicly recognize the efforts of several volunteers who, both locally and nationally, have made a difference by donating their time and talent to help those affected by ALS. Through media outreach, acknowledgment at support group meetings and at public events during the month of May, ALSA will highlight volunteers of the organization such as caregivers, fundraisers, advocates, or health care professionals that give their own time to support those affected by ALS. ALSA's network of chapters and support groups across the country have planned numerous local and regional community activities designed to raise awareness of those affected by ALS, including patient, family members and caregivers. For a listing of events and activities in your local area, please see Local Events at a Glance . ALS is a progressive, fatal, neurodegenerative disease that occurs when motor nerve cells cease to function and die. While a persons mind remains sharp and alert, muscle control becomes completely lost. Approximately every 90 minutes, another American is told they have ALS likewise, approximately every 90 minutes, another American dies of ALS. ALS knows no boundaries. The disease has cut short the lives of such notables as Jim Catfish Hunter, Hall of Fame pitcher; Emmy Award-winning actor Michael Zaslow; Senator Jacob Javits; Jon Stone, creator of Sesame Street; David Niven, actor; Laura Ernst-Downey, Producer/Actress; Glenn Montgomery, NFL player; Ezzard Charles, former boxing heavyweight champion; Dennis Day, singer/actor, Charlie Mingus, great jazz musician and Ruth Whitney, founding editor of Glamour Magazine. _____________________________________ (2) ===== New ALS Web Site Launched by MDA ========== >From : "MDA" Subject: New ALS Web Site Launched by MDA Date : Tue, 1 May 2001 MDA BOOSTS ALS PROGRAM DURING AWARENESS MONTH For the 10th consecutive year, May will be "National ALS AwarenessÊ Month," reflecting a national recognition of the fight against theÊ disease that MDA has led for some five decades. MDA was instrumental in supporting the first ALS Awareness Month, declared by the U.S.Ê Senate in 1992. In keeping with the annual observance, the ALS Division of MDA hasÊ announced several additions to its ALS program: NEW WEBSITE On May 1, MDA will launch a new Web site devoted exclusively to ALS.Ê The site, www.als.mdausa.org, will contain a complete diseaseÊ description, up-to-date research announcements, current and backÊ issues of The ALS Newsletter, other publications related to theÊ disease, ALS-specific chat rooms and other materials. In announcing the site, MDA Senior Vice President and Executive Director Robert Ross said that the directors of MDA's 22 MDA/ALS research and clinical centers across the country have been invitedÊ to participate in a series of online discussions with people affected by ALS and their caregivers. These online conferences are expectedÊ to be scheduled once or twice a month beginning in the fall. In addition, a new chatroom featuring MDA research on MDA's Web site, www.mdausa.org/chat/calendar.html, will also begin in May. TheÊ inaugural chat, at 9:30 p.m. EDT on May 17, will be led by MDAÊ Director of Research Development Sharon Hesterlee, and will focus on ALS. MDA's ALS Web site can be reached either directly at www.als.mdausa.org, or from MDA's main Web site, www.mdausa.org. PRINT PSAs AND LEGISLATION MDA will issue a new set of print public service announcements focused on ALS. The ads will be sent to newspapers and magazines across the country for use year-round. The Association's National Task Force on Public Awareness has alsoÊ endorsed the Homebound Clarification Act of 2001, a bill that wouldÊ change the Medicare definition of "homebound" with respect to homeÊ health services (see "Atlanta Man Inspires"). LOCAL ALS SEMINARS Across the country, MDA's 180-plus local offices hold seminars forÊ the public on neuromuscular diseases, including workshops and lectures focused on both clinical care and research in ALS. A number of localÊ ALS seminars are planned this year, including several in the westernÊ part of the country to be held in May. For example, at an MDA seminar in Tucson, Ariz., on May 19, Stanley H. Appel, director of the Ronny & Linda Finger MDA/ALS Center at Baylor College of Medicine in Houston, and Hiroshi Mitsumoto, director ofÊ the Eleanor and Lou Gehrig MDA/ALS Center at Columbia PresbyterianÊ Medical Center in New York, will present the latest information on ALS. For a schedule of seminars, watch for local MDA newsletters or check www.als.mdausa.org. ============= Tom Bush Director of Online Services & MDAchat Administrator MDA National Headquarters (3) ===== ALS Awareness Night in Michigan ========== >From : "woodie99" Subject: Crystal Motor Speedway in Michigan will host a ALS awareness : Night Date : Tue, 1 May 2001 On May 19, 2001 Crystal Motor Speedway (www.crystalraceway.com) will host a "ALS awareness Night" in honor of Keith Foreman a Pro StockÊ Truck driver who was recently diagnosed with ALS with the help of the West Michigan chapter. (4) ===== re: Cyberlink and MCTOS ========== >From : "Carl Brahe" Subject: Cyberlink and MCTOS Date : Mon, 30 Apr 2001 Maria, This is in answer to your question about MCTOS and Cyberlink.Ê I haven't tried Cyberlink myself so I really don't have much information about it. I have met the inventor, Andrew Junker. I believe he is a brilliant man and the Cyberlink technology is impressive. It wasÊ originally developed to fly jet fighters hands free. It does many things. I believe it requires a PC and Cyberlink software.Ê MCTOS was designed by a man in Japan as a switch for his father-in-law after a stroke. It can be used with mental activity (quiet mind = switch off; excited mind = switch on). It can also be operated by slight eyeÊ movement. The new version that just came out this month also operates as an EMG switch detecting slight muscle activity throughout the body.Ê MCTOS doesn't require a computer to operate. It is a stand alone switch. Many people have used the beep that the unit makes when the switch is activated for basic communication. There are several short videos of TV news stories on our website that show people using MCTOS, including one about a man who has no movement from ALS.Ê He talks to his family and caregivers by beeping to answer Yes/NoÊ questions. A beep means Yes. Silence means No. He also writes poetry. It's a very moving story. I will also send you a copy of all the fullÊ videos on CD. The website has mainly short clips from the stories. I have to honestly tell you that people with ALS have had the hardestÊ time using MCTOS. They take more practice and patience because theyÊ get so weak. I think the new EMG function may be ideal for PALS.Ê When our friend John, a PALS who lived with us the last few years of his life, first lost the ability to move even his eyes, we had an EMG built for him. For a year and a half he could easily answer question and spell out words by moving a needle on the device. It was very reliable. WeÊ haven't had time to test the new MCTOS EMG function with someone who is completely locked-in, but I have high hopes for it. It could makeÊ operating communication and environmental control devices easy for those who are locked-in.Ê Please send me your address and I'll send the videos, newspaper andÊ magazine article and PowerPoint presentation to you. I recommend you also talk to Andrew Junker so you have more information for your decision. I believe his website is: www.cyberlink.com Sincerely, Carl Brahe, President Technos America LTD LLC 386 Quartz Circle Bailey, CO 80421 USA 303-816-0495 carl@mctos.com www.mctos.com (5) ===== "Who Wants To Be A Millionaire" ========== >From : Projectals@aol.com Date : Wed, 2 May 2001 Subject: MEDIA ALERT **FOR IMMEDIATE RELEASE ** Celebrity-packed "Who Wants To Be A Millionaire" airs next week. BenÊ Stiller and Edie Falco play for ALS research. On Tuesday, May 8th, 8pm EST and Wednesday, May 9th, 10pm EST EdieÊ Falco (Carmella Soprano on HBO's runaway smash "The Sopranos") andÊ comedian and star of "Meet the Parents", Ben Stiller, step into the hot seat to play this popular tv game show for their favorite charity,Ê Project A.L.S. This is the first time that the Regis Philbin-hosted ratings topper has had two celebrities playing for the same charity. Both Falco andÊ Stiller have been longtime supporters of Project A.L.S., a New York- based non-profit which raises significant funding for research forÊ ALS (amyotrophic lateral sclerosis). The stars are both personalÊ friends of Jenifer Estess, president of Project A.L.S. and an ALSÊ patient since 1997. Falco and Stiller speak passionately to PhilbinÊ about the plight of their good friend, and their strong desire to winÊ the million and give it to the promising research being funded by the company. Project A.L.S. has developed and is fully funding the most comprehensive and historic stem cell replacement collaboration with scientists atÊ Harvard, Yale, Johns Hopkins, Cornell, the Howard Hughes MedicalÊ Institutes, the Salk Institute and UC San Francisco, among others. In just two and a half years, the charity has raised nearly eight million dollars for ALS, giving over 80% of their money directly to research. For more information about Project A.L.S. please emailÊ projectals@aol.com or call toll-free at 1-800-603-0270. (6) ===== psuedo bulbar palsey ========== >From : "paul blair" Subject: Re: Date : Mon, 30 Apr 2001Ê My brother has been diagnosed with psuedo bulbar palsey. They tell meÊ it is a form of ALS. Can anyone give me a bit of clarification on thisÊ relationship? PAUL BLAIR (7) ===== re: Home Care ========== Date : Tue, 01 May 2001 >From : "Elizabeth H." Subject: Re: Home Care I'm going to use this post as an opportunity to vent a bit on the subject of coverage for home care. Or more precisely, the lack thereof. I was recently encouraged strongly to apply for Medicare assistance as it is scheduled to be available to ALS patients in July of this year. I loboriously compiled all the financial and medical information required on a multi-page form. Big problem: when they called me for the phone interview, it turned out my husband's monthly disability pension alone is too much for us to qualify. This dispite the fact that the cost of fiveÊ 9 hour days of independent home care neatly takes his entire monthly check. Even if I quit my job to do all the caregiving, we wouldn't qualify forÊ any SS financial aid at all. We would have to sell our paid off home and try to live on his pension while renting. If he decides not to have aÊ vent or food tube, I guess we'll never qualify for professional home care at any point other than hospice end-care. Our insurance covered 14 daysÊ of visiting nurse assistance, which mostly consists of limited exercise of limbs. This example illustrates two of my most frustrating problems: One,I too often get unusable advice from so-called experts and two, we are too well off to be provided any public monetary assistance of any kind.Ê So far I make enough money for our needs although I have no paid leaveÊ left and it is early days yet. All of my husband's retirement savingsÊ have been used, as is the savings I had accumulated to replace my 12 year old car. The local ALSA has provided many equipment loan items thatÊ have been quite simply, life savers. I also consider myself extremely fortunate to have found some excellent independent home care people who are relatively low cost. Home care agency charges are beyond our means. Without these wonderful ladies and help from my co-workers we wouldÊ simply not have survived to this point.Ê I thought getting my elderly parents through the trials of Medicare, Medicaid, nursing homes and death had educated me in the trials of institutional obstruction. Let me just say, "Ha!" The complexities of a terminal illness like ALS puts all that in the shade. OnceÊ professionals find out we aren't poor enough, the only alternative they offer is, "are you a member of a church or veterans organization?" The loan agent at a local bank said that her family sold pizzas to collect money for an uncle with ALS. Another woman featured recently on theÊ front page of the local newspaper (ironically with much trumpeting) had to declare bankruptcy before the community rallied to help her out when her husband developed a rare disease. It is a sad fact of middle class living in America that when faced with a completely unexpected health tragedy, the helping hand offered byÊ one's own government is not only uncoordinated and layered in bureacracy to the point of obstruction, but stingy and unrealistic to boot. Although private, charitable help can be a godsend, I do not think it isÊ something that the wealthiest nation in the world should expect itsÊ citizens to have to rely upon in situations like ours. Too bad myÊ husband didn't live in Antarctica, just think of the media coverage! Okay, rant mode off. Betsy H.Ê (8) ===== chat rooms? ========== >From : Mediatramp@aol.com Date : Tue, 1 May 2001 Subject: chat rooms Does anyone have a GOOD, LEGITIMATE ALS chat room that they couldÊ recommend? My sister's husband just passed way on March 3 and she is very interested in getting involved in that sort of thing. PLEASE let me know ... mediatramp@aol.com . (9) ===== re: care giver cost ========== >From : SHark24437@aol.com Date : Tue, 1 May 2001Ê Subject: Re: Mr. Malone, In reply to your inquiry about care giver cost, my mother lives with me. She was dx about 5 years ago. She came to my home in May 1999, and atÊ that time she was under Hospice care. While under Hospice, an aide was paid for by Medicare for 5 days a week, 2 hours a day. Plus she hadÊ nurses visits twice a week. Her medications, hospital bed and oxygenÊ were also covered at this time. In December of 2000, given 3 daysÊ notice, she was dropped by Hospice because she was "not dying fastÊ enough". Since then, she has to pay for the aid herself, which she now gets three days a week. She also is responsible for her medication,Ê but thanks to a good retirement package, the cost is pennies. The only thing covered now by Medicare is her hospital bed and oxygen. And theÊ nurse visits have stopped, unless she wants to pay for them.Ê Good Luck and God bless. Susan Harkness (10) ===== re: ALS and pain ========== >From : "Norma" Subject: ALS and Pain Date : Mon, 30 Apr 2001 We have a dear friend with ALS who is in quite a bit of pain. SheÊ complains her joints hurt her and she is very sensitive to the seams in her bed sheets as well as cramps which occur when her legs need adjusting. If she isn't adjusted quite right she complains that her skin is beingÊ pulled tight. She is in hospice care and is on 50 milligram morphineÊ patches with another pain killer permitted into her feeding tube forÊ break through pain. She started on 25 milligrams morphine patches whenÊ hospice started working with her around Dec. If your friend is in pain, get pain medication. Pain is not a 'growing' experience. It serves no purpose. The disease is horrible enough as itÊ is. Norma === end of alsd 847 ===