=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#109, 04 July 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig'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. Currently there are == == 270+ 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 .. Info on ASN 2 .. some questions 3 .. mouth exercises 4 .. Re: Swallowing 5 .. Vacation 2 6 .. new list: RC_WORLD 7 .. Dietary Affects in ALS (1) ===== Info on ASN ========== Date : Thu, 30 Jun 1994 15:12:54 +0800 >From : scohn@amgen.com (Sherrill Cohn) Subject: Info on ASN Does anyone have an address, phone number or any other information on the American Society of Neurotransplantaation? I haven't been able to find it in the Encyclopedia of Associations, the print publications World Meetings and Scientific Meetings, or on the MediConf or DIRLINE databases. I would gratefully accept any information on them. Sherrill Cohn scohn@amgen.com (2) ===== some questions ... ========== Date : Fri, 1 Jul 1994 20:36:55 -0400 (EDT) >From : Alan Schnittman Subject: some questions.... A co-worker's father has recently been diagnosed with Lou Gehrig's disease. I have been receiving the digest articles and passing them along to him for the past several issues. He has now asked me to post the questions that follow. You may reply to me at this account and I will see that the message gets to him. Thanks in advance, Alan schnitt@access.digex.com Have any ALS patients: experienced asthma or allergic reactions that changed their characteristics prior to the onset of ALS ? been treated with poison oak extract to control allergies prior to the onset of ALS ? experienced severe chills and fever for about only one day approximately a month or so prior to ALS symptoms ? experienced severe skin itch prior to symptoms ? consumed a high calorie, high sugar, high protein, and/or high calcium diet ? had considerable exposure to lead and/or mercury (perhaps as a child) ? commonly experienced low back or lumbar pain ? undergone a period of very strenuous physical activity prior to symptoms ? (3) ===== mouth exercises ========== >From : MarthasueB@aol.com Sender : "MarthasueB" Date : Thu, 23 Jun 94 11:38:42 EDT Subject: mouth exercises Hi, my name is Libby Bebinger and I have ALS. Right now I am visiting my sister in Providence who subscribes to this newsletter. I am from San Antonio, Texas and currently living with my other sister in Austin, Texas. I was diagnosed with ALS November of 93 and had symptoms for a year prior to my diagnosis. My symptoms started with my speech. I went to Dr. Stanely Appel in Houston for a second opinion. I then went back for a follow up the following month. While I was there I was telling the speech therapist about some mouth exercises that a communication disorder clinic gave me on my college campus. She told me to stop those right away. She said they weren't good because I was over using the muscles in my mouth. Then my doctor in San Antonio (where a am on the CNTF study) encouraged me to see a speech therapist that deals with other ALS patients. This women encouraged the "Mouth Aerobics". So now I am really confused. If anyone has any information regarding mouth exercises please let me know. Thank you for your time. I look forward to hearing from you!!!!! Sincerely, Libby Bebinger (4) ===== Re: Swallowing ========== Date : Sat, 02 Jul 94 08:04:00 EDT >From : Michelle Jensen Subject: Re: Swallowing Dear Bob, It's with sadness that I write to say that my Dear Gentle Paul passed away May 8, 1994. It was a big surprise tome because I thought we had another year plus together. There's a wonderful butterfly story I will share with you soon, but from recent correspondence I feel the need to write about swallowing and how to reduce some of the problems. The swallow is a very complex event; it demands precise coordination and timing of several different muscle groups. Our teeth chop the food into a paste, the tongue forms the paste into a ball or bolus and sends it back into the throat. When the bolus hits the tonsil area it triggers the swallow reflex: the larynx is elevated to hide just under the base of the tonge and the epiglottis falls over the opening into the larynx so that the air way passage is closed. The bolus then moves into the esophagus and with a series of muscle squeezes and opening and closing of sphincters, the bolus goes from the esophagus into the stomach. The air way passage into the lungs remains clear. You can feel and watch the coordination of the elevation of the larynx by putting your hand over your adams apple as you swallow. If the larynx doesn't elevate quickly enough, then some of the bolus may slip into the larynx. A good strong cough is our body's way of trying to get the bolus out of the airway inorder to protect our lungs. There are several potential problems for ALS patients: 1) if the tongue (which is all muscle) is weak then a bolus isn't formed and the food can slip into the throat in a disorganized manner and not trigger the reflex. 2) Because of slow moving and poorly coordinated muscles, the larynx may not elevate quickly and portions of the bolus can flo into the larynx. 3) If one doesn't have a strong, protective cough, then portions may slip through the larynx and into the lungs. 4) Often clear liquids like water travel through the weakened system too quickly. Many people have more difficulty with water than thicker fluids. Possible solutions: 1) Eat soft foods or even blenderized foods. 2) Eat small bites. 3) Concentrate. Focus all your attention onto the swallowing act. Make hard swallows. People with you during the meal should help keep your focus rather than general chit-chat. 4) If you have trouble with water or juices, mix "Thicket" with the liquid to make it the consisteny of nectar which will travel more slowly. Some people are successful with small ice chips. Some people are helped with icing the tonsil area before swallowing. 4) Eat calorie intensive foods so that you get lots of calories before you tire. 5) If you have problems with mucous, avoid milk products which encourage mucous. If mucous is too thick, then drink lots of water wich will make the mucous thiner and easier to cough up. I hope this helps. I will be glad to respond to any questions about which a Speech Pathologist should have some knowledge. Best regards, Michelle (Mrs. Paul) Jensen (5) ===== Vacation 2 ========== Date : Wed, 29 Jun 94 09:42:00 EST >From : Colleen_Stephens_at_PO.DAR01@smtplink.infores.com Subject: Vacation 2 As of now my father can still walk fine and is able to eat whole food. We are assuming that most things with ALS do not happen overnight and if we do get there within a month that things will hopefully not have progressed that far. We are also trying to believe that if things are relatively stable when we leave that two weeks there won't be very eventful. I am not sure we are correct in believing that ALS will not affect his legs overnight or his swalling. I was wondering what other people's experiences have been. My father has not done very well understanding the information that he has received about ALS or accepting it. We are assuming that a next step with ALS will mean a ventilator. This will be very difficult to explain to him but we are hoping that he will be able to make the decision about going on a ventilator himself. We are wondering how to go about explaining what being on a ventilator will mean to him. Any ideas or personal experiences? -Colleen (6) ===== new list: RC_WORLD ========== Date : Thu, 23 Jun 1994 13:15:38 CDT Sender : NEW-LIST - New List Announcements >From : "John A. Hannigan" <72624.1202@CompuServe.COM> Subject: NEW: RC_WORLD - Health Professionals Discuss Respiratory Care ---------------------------------------------------------------------- RC_WORLD on LISTSERV@indycms.BITNET Respiratory Care World list or LISTSERV@indycms.iupui.edu RC_WORLD list is open to all health professionals who wish to discuss Respiratory Therapy or Respiratory Care issues. Nurses, physcians, & respiratory care practioners are welcome to discuss health care reform, patient-focused care delievery models, and respiratory care outside the U.S. The list is open to submissions by non -subscribing health professionals. Replies will be normally be sent to all subscribers. Indiana University Medical Center, Department of Respiratory Care, is the institutional host of the list. Archives of RC_WORLD are kept in monthly files, begining with May, 1994. You may obtain a list of files in archives by sending the command: INDEX RC_WORLD in the BODY of e-mail to LISTSERV@INDYCMS.BITNET on BITNET, or LISTSERV@INDYCMS.IUPUI.EDU on the Internet. To subscribe, send the following command in the BODY of mail to LISTSERV@indycms.BITNET on BITNET or LISTSERV@INDYCMS.IUPUI.EDU on the Internet: SUB RC_WORLD yourfirstname yourlastname For example: SUB RC_WORLD Indiana Jones Owners: John A. Hannigan, RRT David C. Farr, CRTT (7) ===== Dietary Affects in ALS ========== Date : Mon, 04 Jul 1994 22:43:26 -0500 (EST) >From : JSRT_GO@PAVO.Concordia.CA Subject: Dietary Affects in ALS I'm interested in finding out whether anyone has found that dietary and lifestyle changes have had any affect on ALS? I've been given the name of someone, whose ALS was diagnosed in 1978, who claims that dietary changes have prolonged his life. I've written to him and have asked for more details. My husband has found that by eliminating milk from his diet he finds that troublesome mucous in his throat is greatly reduced; he finds that he can replace milk by yoghourt. Thanks, Jean. == end of als 109 ==