=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #825 (25 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Editorial 2 .. re: Problems with AOL? 3 .. Vent? 4 .. Stephen Hawking 5 .. re: Dry Scalp 6 .. computer question 7 .. Immune Institute? 8 .. Golf Outing 7/13/01 9 .. Portrayal of an ALS Patient on Prime Time 10 . Breathing Problems 11 . peg tube, hair loss, trouble at home, etc. (1) ===== Editorial ========== I am changing the ALSD subject heading and the first line of the Digest (by adding a word), with hopes this will be useful as regards reaching the AOL users who are not currently receiving the mailings. (2) ===== re: Problems with AOL? ========== >From : support@aol.net Date : 01/25/2001 Subject: Re: help request On behalf of American Online, I would like to thank you for spending the time to write to the Techmail Department. My name is Myla M., it is my great pleasure to assist you regarding any concerns you may have because I highly value your commitment to AOL. I understand from your recent email that you have a question for a member who has not received your mails. I have provided our contact number below. If it is possible for you to call your friend, kindly inform him about our number or you can also give him the details of this email. Please follow the steps below: Please check keyword: "Mail Controls" and make sure you haven't blocked someone by mistake. If you have already checked and are not blocking any mail, please click the "Forward" button and enter the return email address from this email in the "To:" box. In the "Subject" box, indicate you have already checked and disabled mail filters and still cannot receive email. The receiver of your reply will submit an email problem report on your behalf. To check if you have any filters setup that would prevent you from receiving mail, please follow the steps below: 1. Make sure that you are signed onto AOL using a master screen name. (Master screen names include the first screen name you created when you joined AOL as well as any other screen names that have been designated as master screen names using Parental Controls.) 2. Go to Keyword: "Mail Controls". 3. Click "Set up Mail Controls:. A screen will appear that displays all of the screen names on your account. 4. Select the screen name for which you'd like to check Mail Controls. 5. Click "Edit". A screen will appear, allowing you to select a particular Mail Controls setting for the screen name that you have selected. 6. Click the button next to the setting that you would like to activate/deactivate. You can only select one option. A dark circle will appear within the button, indicating that it has been selected. 7. If the setting that you have selected allows or blocks specific domains or e-mail addresses. The domain or e-mail address(es) will appear in the large list box. 8. When you are finished, click OK. Choosing the setting that is right for you: The Mail Controls feature provides 7 different options or settings: "Allow all e-mail:" (Default setting) Select this setting to receive all e-mail that is sent to you. We suggest you enable this setting if you are having any problems receiving email. "Allow e-mail from all AOL members, and only from selected Internet domains and addresses:" Select this setting to receive e-mail from any AOL member and only those Internet domains and e-mail addresses that you specify. "Allow e-mail only from AOL members:" Select this setting to receive e-mail from any AOL member. You will not receive e-mail from the Internet. "Allow e-mail only from selected AOL members, Internet domains and addresses:" Select this setting to receive e-mail only from those AOL members, Internet domains and e-mail addresses you specify. "Block e-mail from selected AOL members, Internet domains and addresses:" Select this setting to receive all e-mail except e-mail from those AOL members, Internet domains and e-mail addresses that you specify. "Block all e-mail:" Select this setting only if you do not wish to send or receive any e-mail. If you select this setting you will not be able to send e-mail. "Block e-mail with pictures or attached files:" Select this setting if you do not wish to send or receive any e-mail that contains a picture or a file attachment. This setting can be used in conjunction with any of the Mail Controls settings. If you wish to speak to us and assist you personally, please contact us at 1-888-346-3704 from 6 am to 4 am Eastern time and we are available 22 hours a day 7 days a week or you can also contact us on Members Help Interactive (Keyword ASK THE STAFF). I hope the information helped fix the issue. Please let me know immediately about any further inquiries or comments you may have. I will always be ready and happy to assist you. Thank you so much for your continued support. Have a nice day! Myla M. Customer Care Consultant The Techmail Dept. American OnLine, Inc. (3) ===== Vent? ========== >From : hacker1234@att.net Subject: Vent? Date : Thu, 15 Mar 2001 I am a PALS (diagnosis 3 February 1997). With my recent FVC at 30%, I now must consider the vent question. I still retain some upper body strength. Although I have not heard from the insurance company, I would like to investigate daily living activities with a vent. Please advise. THANKS. hacker1234@att.net (4) ===== Stephen Hawking ========== Date : Sun, 25 Mar 2001 >From : capucine@sol.dk Subject: stephen hawking I got this article in one of the newsletters I get (emazing.com, science and technology) Hawking: An Infinite Fascination by Andy Patrizio 12:20 p.m. Mar. 21, 2001 PST LOS ANGELES -- If there's a lesson to be learned from Dr. Stephen Hawking, it's that you don't need the starship Enterprise to visit the edge of the universe. You don't even need to leave your chair. Hawking is not only one of the most important physicist and cosmologist of the 20th century, he's also something of a medical miracle in that he's survived almost 40 years with amyotrophic lateral sclerosis (ALS). Patients diagnosed with ALS, commonly known as Lou Gehrig's disease, usually die within two to three years. The ALS was first diagnosed when he was 21. Hawking is now 59 and though confined to a wheelchair and unable to speak except through a computer- generated voice box that he controls with one finger, he is a huge draw and has popularized hard science. Hawking's first mass-market book, A Brief History of Time, was the best-selling science book of 20th century. His popularity was clearly seen on Tuesday evening when he drew a packed house of 1,500 at the University of Southern California, with many more turned away. "There are very few among us who have the talent he has to explain physics to everyone," said Itzhak Bass, director of the Caltech-USC Center for Theoretical Physics and a professor at USC. "He is asking if the universe is too much to comprehend, and his answer was we should try, because it's in the realm of science to answer the question." Hawking's speech, "The Universe in a Nutshell," displayed both his knowledge as well as his famous sense of humor. "I can safely say that I am happier now than I was before my condition appeared," he said. "I have also been asked what other career I might have followed. In fact, my ALS would have ruled out most careers except theoretical physics. But before it developed, I had toyed with the idea of being a political leader." After a brief pause, he added "I might have been a British prime minister, however I'm glad I left the job to Tony Blair. I think I probably get more job satisfaction than he does and my work is likely to last longer." The central notion of his lecture was whether the universe is everlasting and infinite or just extremely long-lived -- and whether we should even bother trying to understand it. "How can our finite minds comprehend the universe? It is pretentious of us to even make the attempt," he said. "At the risk of incurring the fate of Prometheus, who stole fire from the ancient gods for human use, I believe we can, and should, try and understand the universe." Hawking said the most obvious thing about space is that it goes on seemingly to infinity. We don't expect the universe to end in a brick wall, though there's no logical reason why it shouldn't, he said. He said that one of the most important discoveries of this century was made by astronomer Edwin Hubble, who found that galaxies are moving away from our own, and that the farther away they are, the faster they move, which indicated the universe is expanding, and constantly changing. With the distances, it became clear that light had taken millions and even billions of years to reach our planet, far more than the few thousand years that creationism teaches. Too many scientists hold the view that the universe has always existed, or that its origins belong to metaphysics or religion, he said. "In my opinion, this is not a position any true scientist should take. If the laws of science are suspended at the beginning of the universe, why aren't they also failing at other times? A law is not a law if it only holds some times." Determining the origin of the universe is difficult because two laws of physics have to be rectified: Einstein's theory of relativity and the laws of quantum mechanics, which contradict each other. According to German physicist Werner Heisenberg's Uncertainty Principle, the more precisely the position of a particle is determined, the less precisely the momentum is known in that instant, and vice versa. Both position and speed of electrons and protons cannot be determined. Therefore, it's impossible to take Einstein's theory of relativity and its relation to energy and mass and run it backwards like you were rewinding a VCR, because as time runs backwards it gets harder to predict the state of the universe. He compared the universe to the surface of the Earth, which has no boundaries and no end. The universe itself is spherical in shape, expanding at an equal rate in all directions, and the more it expands, the faster it moves. "Inflation may be one of the laws of the universe," Hawking said. "We used to think the universe would stop expanding and collapse. But now evidence suggests the universe will expand forever at an ever-increasing rate." Hawking will repeat this lecture next Monday at the Seattle Opera House. That appearance is being hosted by the Institute for Science, Engineering and Public Policy. (5) ===== re: Dry Scalp ========== >From : "Barb Huston" Subject: Dry Scalp Date : Tue, 20 Mar 2001 In reference to the dry scalp, my husband is an ALS patient and he has been perscribed the Nizoral shampoo, it is kinda costly, but with a perscription, ones insurance or medicaid/midicare may help or pay for it. It is also available in your regular shampoo isles now, but it can be perscribed to save you the cost if you are insured. Goodluck and God bless. Barbie (6) ===== computer question ========== >From : "Stephen Kotzin" Subject: computer question Date : Thu, 22 Mar 2001 computer question... For years i've been using a prentke romich headmaster mouse and wivik on-screen keyboard without any problems while using dial-up erols which is similar to aol. Recently i switched to the high speed cox cable roadrunner so i could have a much faster connection on the internet and still talk on the phone at the same time, but my computer keeps freezing up. Before i have roadrunner removed or am forced to buy a new computer, i was wondering if any of you pals have had this problem and can offer a solution. Thanks, stephen kotzin (7) ===== Immune Institute? ========== >From : "Patricia Smith" Subject: Date: Thu, 22 Mar 2001 Hello, This is my first post. I was DX'ed with ALS in March of 99. I would like to know if anyone has any experience with the Immune Institute in Huntington Beach CA. It has been recommended that I go through their program and would appreciate hearing from anyone who might be able to provide me with some information. My prayer are with all of you. Thanks for your help. Sincerely, Pat (8) ===== Golf Outing 7/13/01 ========== >From : "Cundee Ward" Subject: Golf Outing 7/13/01 Date : Wed, 21 Mar 2001 I am organizing a charity golf outing on 7/13/01 at Gamblers Ridge Golf Course in New Jersey to benefit the ALS Association, Philadelphia chapter. My Aunt Karen was diagnosed with Lou Gehrig's disease two years ago and the Association has been instrumental in coordinating her care and providing emotional support to our family. I would like to give back to them. In any event, this is my first time organizing a golf outing. I am hoping to raise a minimum of $5000.00 for the Association. I was wondering if there would be any way to announce this outing on the website, in the hopes that I could recruit either players or folks that would like to make a contribution to the event. I appreciate your time and consideration with respect to this matter. Best wishes. Sincerely, Cynthia Ward 215-428-3754 cldanie@attgllobal.net (9) ===== Portrayal of an ALS Patient on Prime Time ========== >From : "Bruce Raddin" BJRADDIN@aol.com Date : Wed, 21 Mar 2001 Subject: Portrayal of An ALS Patient on CBC Weekly Prime Time TV show : "Big Apple" Just wanted to make everyone aware of the "Big Apple", CBC television show that aires on Wednesday nights at 9:00 p.m. EST. Ed O'Neill, formerly of Married with Children, stars as a detective....and has a sister portrayed with Lou Gehrig's Disease (Did not catch her real life name). I have not seen this mentioned on the ALS Digest. This is the second week. (10) ===== Breathing Problems ========== Date : Mon, 19 Mar 2001 >From : dgilman@talk21.com Subject: Breathing Problems 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? I have learnt a lot during these last few months from reading the various articles sent in. I have found that there are a lot of very nice people out there with variants of this disease. I would like to thank all the people who have helped me during this trying time in partiuclar..... Bruce Wilson for his advice on speaking and Cher for being a true friend. Thank you Dave Gilman (11) ===== peg tube, hair loss, trouble at home, etc. ========== >From : Sherryeco@aol.com Date : Tue, 20 Mar 2001 Subject: Re: Hello, Many of you know me already. I just had Peg Tube Surgery and with the discomfort for a week I must say I've so delighted that I decided to have the Peg Tube placed while I'm still healthy enough. I have the Bulbar type ALS but still can swallow most foods. I have my good and bad days with the dysphasia but in all I'm doing very well. So for any of you thinking about Peg Tube Surgery it is worth the discomfort for a week or two. I'm enjoying using mine for fresh juices I make and water to stay hydrated. Regarding the lady who wrote about taking Rilusole and hair loss. I have thick shoulder length hair with no hair loss and I've been on the medication for a year. I also use liquid vitamins and minerals in my peg tube. Regarding trouble at home I understand your frustrations. My loving husband is irritable since my diagnosis but supportive and loving. I have a strong net of live long friends who will do any thing for me. Right now I'm fine, only my speech is up and down. My hubby bought me a $4,000 speaking device and in California Pack Bell for free set up TTY for me. So with the speaking device, TTY and a pad and pencil I still communicate when my speech has a bad day. I'm positive and still exercise. Knowing the progression of this fatal disease I have already chose my future home care nurse and doing my living will so I can enjoy life to the fullest. Also, I have the best Neurologist and ALS staff anyone could have. Take Care and God Bless All Of You. Sherry === end of alsd 825 ===