=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#113, 20 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 == == 280+ 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 .. ENMC publication 2 .. re: how not to lose weight 3 .. re: how not to lose weight -2 4 .. re: how not to lose weight -3 5 .. how can I help? 6 .. CNTF/Synergen 7 .. CNTF/Synergen -2 8 .. Pycnogenol 9 .. Pycnogenol -2 10 . seeking input (1) ===== ENMC publication ========== The European Neuromuscular Centre (ENMC) is pleased to announce a new ENMC publication: "Diagnostic Criteria for Neuromuscular Disorders", edited by Professor Alan E.H. Emery, Research Director. This book contains Diagnostic Criteria for twelve groups of neuromuscular disorders together with notes on the current status of DNA findings relevant to each disorder. The hope is that the now formulated Diagnostic Criteria will generate discussion and comments. ENMC will consider publishing adapted and newly formulated Diagnostic Criteria for other Neuromuscular Disorders in a future edition of this book. For more information, please contact: ENMC Secretariat Lt. Gen. van Heutszlaan 6 NL-3743 JN BAARN THE NETHERLANDS TEL + 31-2154-16093 ==== = The above information was taken from SMDI INTERNATIONAL NEWSLETTER, = (Spring 1994, Vol. 8, No. 2) published by the Society for Muscular = Dystrophy Information International; P.O. Box 479; Bridgewater, Nova = Scotia; CANADA B4V 2X6 TEL 902-682-3086 ==== (2) ===== re: how not to lose weight ========== Date : Mon, 18 Jul 94 16:16:58 EST >From : "Mike Doliton" Subject: re: how not to lose weight To all: Thoughts on how not to lose weight. To Ian, My brother-in-law has the name Ian too. He is from Ireland. I have found that every time you eat, try to eat high calorie food. I eat lots of milk shakes and ice cream during the day. I drink chocolate milk for snacks. And I use Ensure every day. I was told that the fast food places are good for gaining weight. Lots of fat in the food. Try to eat snacks in between meals. Use powdered milk to thicken up soups and thin liquids. This is the time that we can have lots of deserts. Puddings, pies, cream pies especially, creamed soups, cakes with lots of frosting. You can have your cake and eat it too. This was the advice I got at the ALS clinic in Philadelphia. Try to expand your stomach by eating large meals. If you can't eat large meals do what I do and eat in between. Take your food home from a restaurant when the portion is too big and eat it in between meals. Use whipped cream on your deserts like pudding or pies. I use ReadyWhip. Use your imagination to get nourishment and calories into your body. I think this is the nicest side effect of ALS. That we can eat whatever we couldn't eat when we didn't have ALS. I was quite heavy 230 lbs. and 5' 10" tall. Then when I got ALS I gradually lost 80 lbs. Now I am fairly stable at 150 to 155. It feels good to not have to fight keeping pounds off. I don't have to spend hundreds of dollars to lose weight. This is the time to eat and enjoy good food. Be a conisour of fine food. I hope I've helped stimulate your mind to enjoy food. Regards, Michael Doliton Sony Medical (3) ===== re: how not to lose weight -2 ========== Date : Tue, 19 Jul 1994 09:08:15 -0700 (PDT) >From : Leigh Redding Subject: re: how not to lose weight Ian, This is an added response to Mike's posting to you yesterday. Prior to being released from the ICU at OHSU the dietician prescribed things quite similar to what Mike brought. The one major difference was Ensure. Her recommendation was to substitute Carnation Instant Breakfast for Ensure. Her formula is double the powder for a single mix with 8 ounces of milk. She had me on two of these each day, 1 in the am and 1 in the pm. There are 5 flavors and you can also add other complimentary flavors. Mix in a blender and add the liquid first. Remember to adjust the liquid down when you add things like banana, ice cream or coffee. If you like your shake thicker put it in the freezer for about 15 minutes. Another treat, if you are a peanut butter freak, is add about 3 tablespoons of peanut butter to either the milk chocolate or the chocolate malt mix, very good, kind of reminds one of a Reeses PB cup. A couple of tablespoons of brewed coffee with either of the chocolate flavors is also very good. In short, the different tastes are good, mix easily with other flavors, contain the basic 19 vitamins & minerals and are suitably high enough in calories to help your weight. A double package in 8 ounces of milk is around 450 calories, and you can adjust that up by adding bananas, ice cream, peanut butter or whatever else you can think of. Another side benefit is savings. My speech therapist also has had good input. Her concerns are two fold, (1) to help my swallowing difficulties, and (2) keep food interesting. Her efforts have been spot on in both catagories. A few examples are: Put a thick fruit nectar in the blender and blend in with it canned fruit. Canned pears seem to go well with the different fruit nectar flavors, peaches and bananas will also work. These are not only refreshing but they are high in calories also. In a blender put 1/2 C. vanilla ice cream, 1/4 C. ricotta cheese, 1/2 C. fruit (pears, peaches, apricots, etc) and 1/2 C. gelled Jello. Blend until smooth, about 250 calories. This one sounds weird but it is very tasty. I hope this finds you well and can help you keep/add to you waist line. I have added over 15 pounds since comming home from the ICU. I have also gone up one size in pants, so it seems to work for me. Leigh Redding(redding@netcom.com) (4) ===== re: how not to lose weight -3 ========== >From : ianp@carina.unm.edu (ian FRIENDS.IN.TIME phillips) Subject: re: how not to lose weight Date : Tue, 19 Jul 1994 17:35:02 -0600 (MDT) Thank you both for your letters. I have a stomach tube so taste isn't important. I will try some of your ideas, although before tube I tried ensure, a pint of haagan das, and three meals daily. Anyway thanks again Ian (5) ===== how can I help? ========== Date : Tue, 19 Jul 1994 07:16:45 +0300 >From: mkb3@midway.uchicago.edu (Michelle K. Bong) HELLO, I HAVE A FRIEND WHO'S MOTHER HAS BEEN DIAGNOSED WITH ALS. I CANNOT BEGIN TO DESCRIBE HOW MUCH HER MOTHER HAS CHANGED PHYSICALLY... I DON'T EVEN RECOGNIZE HER ANYMORE. I WAS HOPING TO GET SOME FEEDBACK ON HOW I CAN BE OF HELP TO MY GIRLFRIEND. I AM FEELING TERRIBLY INADEQUATE AND AM STRUGGLING TO FIND THE WORDS SHE NEEDS TO HEAR. IF ANYONE HAS ANY SUGGESTIONS (BOOKS, MISC. COMMENTS, ETC.) I WOULD REALLY LIKE TO HEAR ABOUT THEM. SINCERELY, MICHELLE (6) ===== CNTF/Synergen ========== HEALTH NEWS DAILY Tuesday July 19, 1994 SYNERGEN CONSIDERING "STRATEGIC ALTERNATIVES" FOLLOWING CESSATION OF ANTRIL Phase III follow-up trial for lack of efficacy of the interleukin-1 receptor antagonist in sepsis patients with organ dysfunction and/or shock, Synergen CEO Gregory Abbott said in a July 18 teleconference announcing the interim results. Abbott said the company will hire an outside advisor to look at a possible sale, merger or joint venture for Synergen. The company will conduct a "rigorous self-analysis" and restructuring. Synergen's second product in the pipeline, ciliary neurotrophic factor (CNTF) for amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease), will be unaffected by the Antril results, Abbott asserted. However, the neurotrophic factor, which is in Phase II/III and part of a joint venture with Syntex, has problems of its own with the recent discontinuation by Regeneron of development of its CNTF for the ALS indication due to lack of efficacy and side effects. Abbott said no safety problems related to CNTF treatment have been reported in the Synergen trials. Synergen is testing three doses of CNTF, all of which are lower than the lowest dose in the Regeneron trial, against placebo in the trial, Abbott noted. The firm expects completion of the CNTF trial by November and reporting of results around February. Abbott pointed out that Synergen's remaining products, including CNTF, are for chronic diseases and have a much longer development time than sepsis to prove efficacy. Synergen's tumor necrosis factor binding protein is in Phase I and the company is hoping to study it in rheumatoid arthritis and multiple sclerosis. Abbott said the company is looking at delivery technologies for its glial-derived neurotrophic factor, which is in preclinical development for Parkinson's disease. (7) ===== CNTF/Synergen -2 ========== NEW YORK, July 18 (Reuter) - Synergen Inc shares shed almost half of their value on news that the company's lead product, Antril, failed in a follow-up Phase III clinical trial for severe sepsis. Synergen said that in order to conserve cash, it will restructure the company and reduce staff. Cowen & Co analyst Carol Werther said Synergen officials told her about half of the company's 630 employees would be laid off. Synergen officials declined to immediately confirm or deny the figure. Analysts said investors also had little hope for Synergen's only other product in late stage development -- ciliary neurotrophic factor, or CNTF, for Lou Gehrig's disease -- following the recent failure of Regeneron Pharmaceuticals Inc's CNTF product for the same indication. (8) ===== Pycnogenol ========== Subject: Re: ALSD112 ALS-ON-LINE Date : Tue, 19 Jul 94 20:36:36 MDT >From : "Gerald Armand Milette" What is Pycnogenol? Nancy Bruning, in her recently published book `The Natural Health Guide to Antioxidants', gives the following description of Pycnogenol: "Pycnogenol is the name of a patented blend of flavonoids that has been used clinically in Europe for many years and has recently received a lot of attention in the United States. The flavonoids in this substance can be found in a variety of plants: grapes, cranberries, beans, cola nuts, and others. However, the ingrediants of the patented product called Pycnogenol are extracted from the bark of the European coastal pine tree. The claims made for Pycnogenol are based on a wide variety of studies and on inferences based on what we know about other flavonoids. Many of these are in a booklet on Pycnogenol, called `The New Superantioxidants-Plus, by Richard Passwater, Ph.D., a noted biochemist and preventive health care authority. In countries outside the United States, this product has been commonly used to treat many health problems-to improve circulation, vision, and flexibility; and to slow aging. Other claims include reducing cancer risk, heart disease, and stroke; reducing symptoms of allergies and arthritis; and improving the immune system-all of which have been linked with improving the antioxidant defense system. In test tube studies, Pycnogenol was 20 times more powerful than vitamin C as a scavenger of free radicals such as superoxides, hydroxyl, and peroxide radicals; and 50 times more effective than vitamin E. In tests of capillary integrity in humans and guinea pigs, Pycnogenol produced a greater and longer correction of capillary leakage than most bioflavanoids. This product's bioflavanoids may play an indirect role in the antioxidant defenses. For example, it is theorized that Pycnogenol contributes to heart disease prevention by protecting vitamin C, which in turn protects vitamin E-both antioxidants linked with prevention of atheriosclerosis. In addition, Passwater proposes that by reducing histamine production, Pycnogenol helps artery linings resist attack by mutagens, oxidized LDL cholesterol, and free radicals. Passwater says that researchers usually recomend beginning with a daily dose of 100 to 150 mg of Pycnogenol for 2-4 weeks and then tapering off to 50 mg." I hope this helps Gerry. (9) ===== Pycnogenol -2 ========== Citation: Total Health, April 1994 v16 n2 p 36(3) -------------------------------------------------------------------------- Title: A new super antioxidant: pycnogenol. Authors: Bowles, Willa Vae -------------------------------------------------------------------------- Pycnogenol is the most powerful natural free radical scavenger and antioxidant yet discovered. Pycnogenol (pronounced pick-NAH-gen-ol) has been taken in tablet or capsule form under medical supervision for decades in Europe with no adverse effects. More than 4 million doses are swallowed every day giving remarkable health benefits. PYCNOGENOL AVAILABILITY AND USAGE Health food stores and some network marketing companies now have Pycnogenol available in 25, 30 or 50 mg. tablets. The price may seem high until you compare it to a prescription. And, remember that Pycnogenol has no toxic side effects. Most Pycnogenol products are imported and made from pine tree bark; however, I recently purchased a bottle of 60 tablets of 25 mg. made from grape seeds distributed by a company called Allergy Research Group. Health food stores also have a 45-page book, titled THE NEW SUPER ANTI- OXIDANT PLUS, The Amazing Story of Pycnogenol by Richard A. Passwater, Ph.D. that is interesting, educational and inspiring reading. You'll read about case histories of patients with various diseases, the amount of Pycnogenol and other nutrients administered and the positive benefits. He gives valuable information from the October 1990 International Symposium concerning Pycnogenol held in Bordeaux, France. Willa Vae Bowles is an author and nutritionist and resides in Tulsa, OK. ========================================================================== (10) ===== seeking input ========== Date : Tue, 19 Jul 1994 21:17:42 CDT Sender : Discussion of issues related to research into Self-Help and : Mutual Support >From : "Mary Alice Gillispie,MD" : Subject: Seeking Input I have been asked to sit on a national consensus panel that will look at policy recommendations for development of the information superhighway (officially known as NII-National Information Infrastructure) that will improve health. Specifically I am looking for thoughts, ideas, references etc. that will address how access to this emerging technology can be used by individuals (as ordinary citizens, students, patients, employees etc.) to improve health. This is a field that is wide open and creative thinking about how to appropriately apply this technology will be critical if we are to ensure that benefits are available to all. All ideas are welcome either to the list or to me by E-mail. Mary Alice Gillispie,MD UD171581@VM1.NODAK.EDU == end of als 113 ==