Date: Tue, 21 Mar 95 17:33:08 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#181 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#181, 21 March 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot's Disease == == == == 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 == == 570+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == Sorry, but this is *not* a LISTSERV setup. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Editorial 2 .. Feeding Tubes 3 .. Alternative Healing 4 .. CINI 5 .. Other Thoughts 6 .. Laugh, I Thought I'd Die: My Life With ALS 7 .. Awareness (1) ===== Editorial/Announcement ========== Sorry, there are still unpublished notes ... but the next issue will be out in a couple of days. We will be caught up soon. Research is being done in preparation for a MacNeil/Lehrer Report show about on-line medical support groups. People who know about resources that would be useful for such a program should let the person who is doing the research know about it. She already knows about ALS Digest. Her data is: Jennifer Green MacNeil/Lehrer Report TEL 212-560-3152 FAX 212-560-3117 (2) ===== Feeding Tubes ========== > From : martin!Roger_Creedy@netcom.com (Roger Creedy) >Date : Fri, 17 Mar 1995 15:47:24 CDT Subject: Feeding Tubes We are facing the prospect of having a feeding tube installed. This is a new experience and would like to have direct feedback about how it is handled, what your recommendations are and precautions, if necessary. You can replay to this address or to r.creedy1@genie.geis.com Thanks - Roger Creedy - Rockford, IL for Debbie (3) ===== Alternative Healing ========== Date : Tue, 14 Mar 1995 08:37:35 -0700 >From : jreed@csn.net (Jim Reed) >From : David McEachran c/o jreed@RockWare.com Subject: Alternative Healing I read with great interest the article submitted by Robert Macdonald about ALS and spiritual healing. It encouraged me to write about my own experiences with ALS in hopes that it may help other people. One year ago today I was told that I had motor neuron disease. I'm still here, and I'm still fightin'! I am 34 years old and have been diagnosed with the bulbar onset form of the disease. I experienced symptoms for a year before the final diagnosis. At present, the disease makes it nearly impossible for me to communicate verbally and eating is difficult. Luckily, I have few symptoms in the rest of my body except for some minor weakness and the annoying and frightening fasiculations. When the diagnosis of Motor Neuron Disease was made, I was devastated. I sank into a state of deep, frightened depression. I was 33 years old, had been married one year, and was in the midst of planning and enjoying the best years of my life. At first I tried to deny the implications. I did not want to know any of the details about the disease because they scared me so. I kept thinking, "Of all the diseases one could catch, why this one, and why me ?" Last summer my wife convinced me to look into alternative healing methods. Under other circumstances I would have scoffed at these as kooky or a ripoff. But, since modern medical science had nothing to offer, why not try it. Since then I have tried vitamins, herbal remedies, homeopathy, chiropractic, meditation, massage therapy and aromatherapy. I am still experimenting with all of these methods in various forms. So, have any of these alternative methods slowed the progression of the disease ? Probably not in a direct way. They have improved the overall health of my mind and body. And more importantly, they have given me hope, and a sense that I am in control of my health and my destiny. Learning about other forms of healing has enabled me to view my body as a whole, integrated system rather than many separate parts; a fact overlooked by many doctors today. When we are struck with a major, chronic illness, it is not just our nervous system, or our digestive system, etc., that is sick, but our whole body. Stress and tension from our modern lifestyle can cause conflict and imbalances in our bodies that may eventually lead to serious illness. Thinking in this way forced me to conduct a long overdue review of my lifestyle, especially my mental mindsets. I do not deny that there are causes for disease beyond our control such as genetics and environmental factors, but there is a definite mental aspect that we can control. The most effective form of "alternative" healing I have tried has been meditation and visualization. At first it might seem that this would be the least effective because there are no modern drugs or special remedies to take. But, getting in touch with your body, mind and spirituality can give you a very effective tool for fighting disease - peace of mind. The most basic form of meditation is simple relaxation. After dealing with doctors, insurance companies, family, and your own fears and disabilities all day long, taking a 1/2 hour to lie down, relax and let your worries float away can be very refreshing. When I meditate I go to a quiet, dim part of the house and play relaxing music or recordings of nature, such as waves, or wind and rain. I begin by lying down and emptying my mind by taking a few deep breaths and repeating a short, positive phrase such as "I am relaxed". Then, I consciously try to relax every part of body; my feet, legs, arms, neck, etc. When every muscle is still I might travel back and re-live a pleasant experience such as walking on the beach, hiking in the mountains or partying with friends. This type of imagery deepens the feeling of relaxation and creates a positive mindset. I then imagine myself going into my body. I travel to my brainstem and find the motor neuron cells. I form a positive mental image of the working motor system. I see the motor neuron cells as healthy and robust, but relaxed, with the axon branching down to the muscle. I picture bursts of bluish-white light traveling down the axon to signal the muscle to move. Sometimes, I view my nervous system as a forest or greenhouse with each cell being a different type of plant. I picture this as a integrated, symbiotic system with the plants bursting with life in a moist, sun-drenched scene. I end my meditation by thinking positive thougths and picturing myself as healed. I think about all of my family and friends and the love they feel for me. Slowly, I bring myself up from the relaxed state to consciousness. When I get up, I feel relaxed, refreshed and ready to face the day. The will to live can also be a strong restorative. When I was diagnosed my wife and I were planning to have a family. I worried that having children might not be a good idea, if their father was dying from a degenerative disease. Rather than deprive ourselves of this joy, we decided to go ahead despite the potential problems. We had our first child in January. His name is Aaron, and he is a workout ! If I wake up depressed or worried in the morning, his little face is the best tonic I know. I firmly believe that this disease can be beaten, and that I will do it ! Two books I have found very helpful in learning about the mental aspects of illness are "Love Medicine & Miracles" by Bernie Siegel and "Anatomy of an Illness" by Norman Cousins. "Love Medicine & Miracles" is really an excellent book. Most of the examples deal with cancer patients, but there are a lot of good insights for dealing with any illness. David McEachran, 3/14/95. Jim Reed - RockWare Inc - 2221 East Street - Suite 101 - Golden, CO 80401 USA Phone: 303-278-3534 - FAX: 303-278-4099 - jreed@rockware.com (4) ===== CINI ========== Date : 18 Mar 95 14:59:37 EST >From : Peter Strugatz <73523.151@compuserve.com> Subject: CINI CINI is moving ahead and just received a grant from the MCI corporation to help us print and distribute our Communication Resource Guide for the ALS comunity. I thought it would be a good idea to post a general release of info on CINI to the group especially for all the new members. Warm Regards, Peter Strugatz, President CINI Communication Independence for the Neurologically Impaired (CINI) ================================================================= The Need For Augmentative Communication Intervention. .......... Communication of our feelings, needs, and intentions is the essence of being human. Now, imagine if you could no longer communicate through neither the spoken nor the written word. For the most neurologically impaired individuals, this is a devastating and frustrating reality. For this reason, professionals who work among the ALS (Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig's Disease) population, have come together to establish Communication Independence for the Neurologically Impaired (CINI) in October of 1993. CINI's primary goal is to provide augmentative communication services to those patients who are unable to obtain evaluation and treatment at established communication centers due to their physical limitations/transportation problems. CINI's Evaluation on Wheels will allow patients to obtain augmentative communication services at home. A van will be available for trained professionals. This van will be equipped with an array of evaluation equipment to visit home-bound patients. It will allow objective and efficient evaluations to take place. Evaluation on Wheels will also be available to visit medical facilities to maximize the use of this equipment and use of the professional's time. Amyotrophic Lateral Sclerosis is a progressive and fatal neuromuscular disease affecting a select group of nerve cells and pathways in the brain and spinal cord which leads to progressive paralysis of the muscles. The mind, however, is not affected. Currently, there is limited information among professionals and the general public about augmentative communication intervention, which provides adaptive/alternative ways to communicate when verbal communication is no longer possible. * There is a lack of information regarding what is available for the communicatively impaired patient; * There are limited funds for patients who can benefit from communication systems but are unable to purchase them; * There is a limited number of professionals who specialize in the neurologically impaired with background knowledge in communication and swallowing intervention; * There is limited evaluation equipment available for speech-language pathologists who specialize in augmentative communication; * Patients are unable to travel to specialized facilities secondary to severe physical disabilities. When neurologically-impaired patients do not get evaluated and treated: * They are unable to communicate medical needs and feelings; * They are unable to effectively handle personal affairs; * Communication becomes abbreviated due to the amount of time it takes to communicate even simple messages; * They lose their independence; * They are unable to function as productive members of society; * They lose hope. CINI Communication Independence for the Neurologically Impaired (CINI), a New York based, not-for-profit organization, is a resource center dedicated to augmentative communication solutions for individuals with ALS (Amyotrophic Lateral Sclerosis, commonly referred to as Lou Gehrig's Disease) and other neurological diseases. All efforts are focused on the goal of maximizing and advancing communication for these patients. The areas in which CINI is concentrating its efforts include: * A Resource Guide, which will provide an informational overview of the effects of ALS upon communication and swallowing for patients, caregivers, and the medical community. Available communication solutions, professional resources, and reference materials will be included; * Evaluation on Wheels, a van equipped with evaluation equipment making assessment of communication needs more accessible to regional medical institutions and home-bound patients; * Electronic Bulletin Board, to promote the exchange of communication solutions; * A Communication Equipment Loan Bank, which will make augmentative communication equipment available to patients regardless of individual resources. Please contact us at: CINI, 250 Mercer Street, Suite B1608, New York, NY 10012 Attention: Marta Kazandjian, Executive Director, or at (516) 981-3394. Our fax number is: (516) 472-9016. Our Internet address is: 73523.151@COMPUSERVE.COM Our Compuserve address is: 73523,151 Our Prodigy address is: XKBG36A (5) ===== Other Thoughts ========== Date : Tue, 14 Mar 95 09:08:02 GMT >From : "MIKE COLERA at WZBASG" : Subject: Other Thoughts Recently, my Mother-in-law was diagnosed with cancer. It started in her chest, spread to her throat and she lost her voice box. I told her that at least I could get a word in now. She smiled at my humor. She was a nice lady. Her daughters could not face the inevitable and insisted that the doctors do all they could and they did. The last 4 months of her life was death by the inch. The machines, the medicines left her with the most miserable existence one could imagine. I was happy that she finally found her peace and an end to her suffering. Why am I relating this story on the ALS net? A few months later, my father-in-law was trouble by a series of events that were said to be minor strokes. This past October the diagnosis was made: ALS. Since then he has regressed rather rapidly. He can still speak, has some motion, but feeding, bathing and personal care must be assisted. The other day he called and told me that he has made a living will. He did not want to end his life the way his wife had. He was angry that he had allowed his children treat her that way. He went on to say that he expected me as his oldest son-in-law to insure that he be allowed to go with some dignity. I will respect his wishes. And that is my message. To be losing a beloved family member to any disease or for any reason is a most painful human experience. The tendency is to keep them alive at all costs and I do not mean just the financial. We all need to respect the wishes of the patient in these matters. Local hospice agencies can help family members as well as patients deal with these final moments. Don't put your loved ones through a living hell to satisfy your needs. PAX (6) ===== Laugh, I Thought I'd Die: My Life with ALS ========== Laugh, I Thought I'd Die: My Life with ALS, Dennis Kaye available from: ==== = Albert Britnell Bookshop = 765 Yonge Street = Toronto Ontario M4W 2G6 CANADA = TEL 416-924-3321 / 800-387-1417 = FAX 416-924-3383 = E-M jab@io.org ==== Paperback $12.95 (Canadian) Hardback $25.99 (Canadian) $22.00 U.S. Postpaid (7) ===== Awareness ========== May 1995 Amyotrophic Lateral Sclerosis Awareness Month ALS Association 21021 Ventura Boulevard, Suite 321 Woodland Hills CA 91364 TEL 818-340-7500 FAX 818-340-2060 August 1995 Spinal Muscular Atrophy Awareness Month Families of Spinal Muscular Atrophy P.O. Box 1465 Highland Park, IL 60035 TEL 800-886-1762 / 708-432-5551 === end of als 181 ===