=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #836 (13 April 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. getting enough to drink? 2 .. re: computer question (ALSD825-6) 3 .. re: HeadMouse (ALSD807) 4 .. re: free book 5 .. Van For Sale 6 .. re: ALS testimony 7 .. Curtis R. Vance Foundation Fundraiser 8 .. Mercury and neurodegeneration (1) ===== getting enough to drink? ========== >From : Peteosullivan1@aol.com Date : Thu, 12 Apr 2001 Subject: getting enough to drink? Would anyone have any ideas or suggestions for this? I've nearly lost use of my arms so can't lift my cup and my suck has gone so can't use a straw and if someone puts the cup to my lips to drink I will choke and splutter. Does anyone know of a product that uses a mini pump to get drink through tube up to mouth. I'm waiting to be called in for a peg tube but until then I feel dehydrated. Thanks - Peter (2) ===== re: computer question (ALSD825-6) ========== To : "Stephen Kotzin" >From : "Grant L. Nicholas" Subject: Re : computer question Stephen, It is only a guess, but it sounds very much like when the new interface card was installed in your computer a IRQ conflict was made. The modem like device used for the cable connection is set to a conflicting setting when compared with the other IRQs used by the computer. If you have you old modem, have some one check out what interrupt and what address was used with that device, and then match those settings on the new board. Hope this is of some help. Regards, Grant (3) ===== re: HeadMouse (ALSD807) ========== Date : Mon, 19 Feb 2001 >From : Alan Subject: RE: HeadMouse There was a question in a recent digest about the suitability of the HeadMouse for a portable computer. Two years ago, I spent quite a bit of time setting up a laptop computer for my wife, a long-time PALS who has no movement capability below her neck. I thought it might be helpful to share some of my experiences via the Digest. (But do keep in mind that some of the information below may be out of date.) My wife uses a device very similar to the Head Mouse, called the Tracker (www.madentec.com). It works very well, and we highly recommend it for PALS and others who cannot use a conventional mouse. The Tracker does require fairly good range of motion of the head, however, about 3-4 inches up & down and side-to-side. For those unfamiliar with these devices, the Tracker takes the place of a computer mouse. It uses an infrared light source and detector to track the user's head motion and then moves the mouse cursor on the screen. The Tracker plugs directly into the computer's mouse port; there's no hardware or software to install. The Head Mouse (Origin Instruments, www.orin.com) probably performs about the same. I did have a brief demo and it seemed to work as well as the Tracker. I chose the Tracker over the Head Mouse because it cost less (two years ago) and is self contained (except for the AC power plug). But moving the mouse cursor is just the beginning; you need hardware or software to emulate click, double click, or click & drag. The best solution is a simple mechanical switch that can be activated by foot or hand motion, if the user has some movement somewhere below the neck. (You can't rely on head motion to click, because the Tracker will sense the head motion and move the cursor off target.) The Tracker has a jack that will accept the plugs on most switches. TASH (www.tashint.com) has a good selection of switches. Another alternative may be a blink switch from Words+ (www.words-plus.com). But you need to be sure that the infrared light from the Tracker doesn't interfere with the infrared sensor on the blink switch, and give false clicks. (We haven't tried the blink switch.) Yet a third solution, which is what my wife uses, is dwell sensing software, such as Gus Dwell (www.gusinc.com); also sold by Madentec. This software senses non-motion of the mouse cursor and registers a click, double click, etc. There's a pop-up menu to select the click type, which must be selected BEFORE the mouse cursor is moved to the target, not after (a paradigm shift for most computer users). Unfortunately, Gus Dwell crashes somewhat frequently on my wife's computer. Origin Instruments sells similar dwell software, but it does not have the unique collapsing box visual cue that makes Gus Dwell easier to manage. Another accessory needed by PALS who cannot use the keyboard is a way to type letters and numbers. My wife does have a simple pop-up on-screen keyboard (probably similar to the utility built into the latest versions of Windows), but she finds it tiresome to type more than a few words with it. Too much effort to position and hold the cursor while waiting for Dwell to register the click to select the letter. For her primary e-mail and letter writing, she uses Words+ EZ-Keys (www.words-plus.com). This is switch scanning software that scans through the letters and numbers, pausing briefly at each one. Turning her head to click a cheek switch selects the letter, then on to the next. EZ-Keys also has adaptive word prediction that guesses the remainder of the current word or the next complete word, based on the user's vocabulary patterns. Saves a lot of key strokes. Screen Doors, sold by Madentec, is a pop-up keyboard with similar capabilities, but my wife had already been using EZ-Keys on her previous computer and decided to stick with it. (Gus sells a similar keyboard program, but I didn't evaluate it because of its high price.) Hope this experience helps PALS and their helpers who are trying to set up an accessible computer. ---Alan--- >I am considering buying HeadMouse for a portable computer. Has anyone >used this system? Does anyone have any comments about HeadMouse, either >for or against it? (4) ===== re: free book ========== >From : KarenRynders@cs.com Date : Thu, 22 Feb 2001 Subject: I requested a copy of Dr. Adams book "God, I Want to Ask You." It came in the mail yesterday and I sat down and read it right away. As I sat reading, I felt as if Dr. Adams was answering my questions and not how he was feeling. I love the Scripture quotations that were also in the book. Everyone should read this book. I plan on passing this book to family members and friends to read. I know they will get as much out this book as I did. Thank you again, Dr. Adams, for making this wonderful book available to all. >Dear Fellow PALS: >After bulbar onset ALS forced an end to my service as a pastor, I was >flooded with questions that are common to us. To achieve some peace, I >began working through these, writing as I did. The result was a fifty- >three page booklet titled, God, I Want To Ask You - Seven questions when >facing death. > >Now, through the generosity of the publisher, I would like to offer you a >complementary copy that will be sent (postage paid) upon request. > >The seven questions dealt with are "Why is this happening to me?" "May I >have more time?" "Why not suicide?" "Must I be depressed?" "Jesus, can I >trust You?" "Where will I go after I die?" and "What is heaven like?" As >you can tell, this book is written from the perspective of the Christian >faith, and attempts to find answers in the Bible. > >If you would like to receive a free copy of this book, please e-mail your >request and mailing address to biblealive@juno.com. If you prefer, you >may write them at Bible Alive Ministries, PO Box 2222, Fayetteville, NC >28302. > >Thank you for allowing me to share my hope with you. Harry Adams (5) ===== Van For Sale ========== >From : "The Cottrills" Subject: Date : Thu, 12 Apr 2001 My father regained his freedom from ALS on April 7th, 2001, exactly three years from the date of his diagnosis. He fought the disease with courage, strength and dignity. We were all very proud of how he handled his illness. He slept away peacefully at home in his favorite chair surrounded by his family. As a result of his death my mom would like to sell the van that transported him to many places over the past year. It is a 1997 Chev Explorer model 1500, full size 7 passenger van with lift, tie downs and hand controls. The van has air conditioning, cruise controls, inter. wipers with mist, Delco stereo cassette player, power windows and locks. Mom recently put on new rear brakes. The mileage is 139,000 km. Asking price $19,000.00. Available in Southwestern Ontario. For more information please call 1-519-368-7762 in the evenings or on the weekend or 1-519-528-2190 during the day. Your thoughts and prayers are with all of you, PALS and caregivers. Cheryl (6) ===== re: ALS testimony ========== Date : Wed, 4 Apr 2001 >From : christine lyszczasz Subject: ALS Testimony Responses An open letter to all who have responded to my "ALS Testimony" in the ALS Digest #831 Dear fellow sister ALS family, I say this because anyone diagnosed with this disease or having a loved one dealing with ALS has much in common. We know because of the reality of needing hope keeps us going. Our family, children and friends are intimately involved in our Spiritual, emotional, and physical needs. I am humbled by your responses to asking for help using the essential oils in treating the many symptoms being dealt with. But I must share the whole story. Though my husband has much improved, I do not know if their oil treatment will have the same or any benefits on those looking to use it. There are many variables which must be considered. The first concern using "their" products and all the results that could be achieved. Why? Because right now I am being asked by a "for profit company" to say their oil products worked and I did not even use their products. The research we are looking for is general to benefit all, especially the people and family of those suffering form ALS. That is why we need funding so no company can take advantage of people vulnerable to believing unsubstantiated claims. As a RN, I recognize the need for medical science to work together with the experts in the field of natural medicine so that both "east" meets "west" team can be developed. Somehow by the grace of God, this is being accomplished by Dr. Martina Berger of Irvine College of California, offering her help that essential oils can affect the echo virus found in ALS patient spinal column. Dr. Kurt Schnaubelt of the Pacific Institute of Aroma therapy has also offered to assist Dr. Berger in his expertise in Aroma therapy. I have also talked to other people in both fields who will accompany their specialty in bringing the best in "team approach" Susanne Catty, from Canada, has been working in the area of hydrosol-s in essential oils which takes this to a new level of using essential oils with more vehicles of treatments. She has just published a book on her 5 years of research and treatments. So if I were to somehow presume that my husband and everyone would be helped, that would be very presumptuous! You see, just as each essential oil has so many properties, each person responds to them differently. Just as we have a finger print all our own, so also is the treatments and combinations found to be beneficial to the individual. This must be monitored, changed when needed, and rearranged to continue to optimize the benefits. Can one dose, one way, work for all? Hardly. there are topicals, inhalation, internals and other methods of delivery to complex to quickly simplify. But, if done under the guidance of a qualified "practitioner," much is accomplished. There are many companies selling essential oils. Some are therapeutic, and some make claims that would frighten me. Prices vary and so does quality. Why do I feel you need to know all this? So that you listen with your heart, pray for guidance and remember that God created these oils to help heal us. I have been given so much hope since I started studying and using essential oils. Miraculous yes, but God gets the credit. He will guide, and if we listen we will receive His benefits. In closing may the Lord bless you as you see His hand in those willing to give of themselves, time, talent and money. Those who are willing, will know hope. Respectfully, Christine Lyszczasz (7) ===== Curtis R. Vance Foundation Fundraiser ========== Date : Thu, 22 Mar 2001 >From : Larrybrvance@aol.com Subject: Curtis R. Vance Foundation fundraiser The Curtis R. Vance Foundation, Inc. is holding a fundraising event at The Golden Gate Yacht Club in San Francisco, California, on Friday, April 20, 2001. Tickets are $30/person in advance, $35 at the door. The evening will include food, cash bar, dancing, a live performance by the band, Plasticade, and a raffle. Semi-formal attire is optional. Please contact Heidi Erdmann Vance at (860) 721-1860, larrybrvance@aol.com, or the San Fran coordinator, Matt Rudnick at matt@gravitypeople.com to purchase tickets, or for additional information. In addition, we are currently requesting donations for our raffle, so if you have an item to donate, or know of someone who would be interested in donating, please also contact us. We are looking for gift certificates, theatre/show/movie passes, jewelry, art, anything that you think someone may like to win! The Curtis R. Vance Foundation is a nonprofit corporation, whose purposes include but are not limited to public education and funding of research for a cure for ALS, commonly known as Lou Gehrig's disease, and providing assistance to the victims of the disease and their families. The Curtis R. Vance Foundation was created by Curtis Vance and his wife and caregiver, Heidi, in the winter of 1999. Diagnosed with familial ALS in December of 1998, at the age of 25, Curtis died in December of 1999 as a result of respiratory failure. Throughout the time that Curtis lived with ALS, he remained positive that a cure would be found in his lifetime, and simultaneously lived each day as though it could be his last. He learned how to live while he prepared to die. His humor, love, and generosity flowed out of him and into every person who met him, both before and during his illness. Six months after the diagnosis, he questioned Heidi with a smile and a tear, "Why can't you find the cure?" And, during one of his last days, he declared to her, "I pray that no one else in my family, or in the world, will ever feel the way I do now." Although mentally strong and emotionally healthy, Curtis was physically exhausted. He could no longer move his legs and arms, breathe on his own, or eat and drink without the aid of a feeding tube. His voice was soft and slurred, and since his facial muscles had recently deteriorated, a smile was almost an impossible task. But, one could still sense his spirit in his eyes, and it is his spirit that has pushed 25-year-old Heidi forward since the day Curtis left his riddled body. When her days of physically caring for Curtis came to a halt, she began dedicating the hours to their foundation, and hopes that someday she can fulfill her husband's dreams. For more information on the foundation, please go to their website: www.als-curtisvancefoundation.org (8) ===== Mercury and neurodegeneration ========== Date : Sat, 31 Mar 2001 >From : Per Dalen Subject: Mercury and neurodegeneration Below are some further links to materials about a recent demonstration of what extremely low concentrations of mercury can do to nerve cells. Bernie Windham was the first to post a link to this news in ALSD #828. http://www.neuroreport.com/ Click the upper of the two "Special press release" links. http://ipsapp002.lwwonline.com/servlet/ GetFileServlet?J=1860&I=88&A=2&U=1&T=2 http://ipsapp002.lwwonline.com/servlet/ GetFileServlet?J=1860&I=88&A=21&U=1&T=2 When this message is posted the above links may not be functional, because the journal only promised to make the entire article available for a short time. http://ipsapp002.lwwonline.com/ ips/frames/static.asp?J=1860&file=/texts/PRLorscheider.htm http://cbc.ca/cgi-bin/templates/ view.cgi?/news/2001/03/27/Consumers/dental_fillings010327 (Note the video link at the upper right hand corner of this page.) http://calgary.cbc.ca/cgi-bin/templates/view.cgi?/ news/2001/03/26/fill260301 http://www.iaomt.org/merc-alhlz.htm http://www.bioprobe.com/ReadNews.asp?article=31 http://www.bioprobe.com/ReadNews.asp?article=32 Per Dalen, M.D., Ph.D. === end of alsd 836 ===