Date: Sat, 28 Oct 95 16:45:53 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD221 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#221, 28 October 1995) == == == == ------ 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 == == 1140+ 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 == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/alsig.htm == =============================================================== == A full set of back issues (on MSDOS 3.5 INCH HD diskette) == == are available by sending me your complete mailing address.== =============================================================== CONTENTS OF THIS ISSUE: 1 .. BDNF Study 2 .. Reply to Steve Hildebrant 3 .. ALS/MND Internet Home Page 4 .. a poem 5 .. letter from ALS patient 6 .. CEPHALON SUBMITS TREATMENT IND FOR MYOTROPHIN TO FDA 7 .. help 8 .. information (1) ===== BDNF Study ========== Date : Wed, 25 Oct 1995 10:32:19 -0600 (MDT) >From : neuromus Subject: BDNF Study A clinical trial for patients with ALS is currently taking place at The University of New Mexico School of Medicine in Albuquerque, NM, USA.It is a 9-month study sponsored by Amgen, Inc. and is being conducted by Raul N. Mandler, M.D., principal investigator and by Jerry J. Shih, M.D., co-investigator.This is part of the nationally conducted, double-blind, placebo controlled study using synthetically produced brain-derived neurotrophic factor (BDNF). It is hoped that this drug may slow the progression of the disease. Patients who have a diagnosis of definite or probable ALS, who have good pulmonary function, a moderate degree of ability in daily living activities, and who are under 80 years of age may be eligible for the study. Enrollment is still open. For more information, please call Ms.Joan Werner, Research Coordinator at (505) 272-6356 or Ms.Martha Meister, R.N.at (505) 272-3194. Thank you very much for your attention. Sincerely, Raul N Mandler, M.D. Associate Professor of Neurology and Anatomy Director, Neuromuscular Program Department of Neurology The University of New Mexico Health Sciences Center Albuquerque, NM 87131 (2) ===== Reply to Steve Hildebrant ========== Date : 24 Oct 95 18:10:03 EDT >From : Mike Ward <72567.400@compuserve.com> Subject: Reply to Steve Hildebrant Steve, I have found a good solution to your problem. I can well remember the nights when I couldn't move and my legs and arms hurt. That is a particular terror reserved for ALS suffers! My solution requires 6 pillows and a foot board. First build a foot board that extends at least a foot above the mattress. I used some plywood. Next put one pillow under your legs, pulling it down so it comes up to your heels but not under them. This will leave your heels suspended so they don't rest on the bed and start to hurt. Next put a pillow between the foot board and your feet. This supports your feet and keeps foot drop from hurting. In my case I must fold the pillow to get it thick enough. Next put a pillow under each arm. This places the arms at a comfortable height and is softer than a mattess. I put the last 2 pillows under my head. The top one is my old favorite and the bottom one is moved in and out to tilt my head forward to a comfortable position. I put a towel under my head and roll it up against my head to keep my head from falling to the side. With this arrangement I have stayed on my back in bed for 3 days. Another item I find nice is a clock I can see easily. I have a clock with 4 inch numbers I bought at a local store. I also have an adjustable bed. I talked my insurance company into paying $2000 for an adjustable bed. This was cheaper than a hospital bed so they were happy. They didn't know that for that price I got 2 beds! A single bed for my wife and me making a king size bed. If you buy an adjustable bed be sure to get a lift kit. This raises the bed 6 inches off the floor. This gives space so you can get a Hoyer lift under the bed. A hoyer is much easier for transfers when totally paralyzed. Also get the vibrator option. I hope this helps. If you more information contact me at 72567.400@compuserve.com Thanks, Mike Ward (3) ===== ALS/MND Internet Home Page ========== Date : Tue, 24 Oct 1995 14:58:36 -0400 >From : dickp@rockmug.org (Dick Price) Subject: ALS/MND Internet Home Page Dear Bob, We have subscribed to your newsletter through AOL since we learned of it in 1994. You are doing a great job and there is no way we can thank you enough for your efforts. Because of your considerable ALS involvement were wondering if you would be interested in working with us to create and moderate a new, CENTRALIZED, ALS/MND Internet Home Page that we are considering setting up in the near future. It would be accessable to EVERYONE regardless of the access provider they use. AOL, Compuserve, eWorld, and Prodigy now all offer direct access to the Internet. I had expected that someone else would have undertaken this project by now. The ALS chats on Prodigy and AOL cannot communicate with each other and only an internet home page can offer *links* to other sites. As I do not know of anyone currently engaged in this task I guess that it is up to me and anyone else I can get to help me to see that it is done. Besides, I am certain that I can get a top notch professional to do all of the creative and design work on a home page for free. My wife, a certified social worker, started the ALS Support Group - Lower Hudson Valley, NY & NJ, in 1987, shortly after her mother died of ALS. We concentrate all of our efforts on patient care, have no payroll or paid consultants, do no fundraising, and support our efforts solely on whatever memorial donations we recieve. This restricts our ability to support new projects. I help her run the support group and am also the president of the RockMUG Macintosh User Group (MUG). In that latter capacity I recently *won* a free internet home page design to be done by an expert graphic artist located in Virginia. It was intended to be for the MUG but my members seem to be having fun and are doing such a good job on our existing home page that I would like to use my *free design* to set up an ALS/MND International Home Page on the World Wide Web. All of the existing ALS/MND chats could move to a single, worldwide, common chat room on the internet that could still be accessed by everyone via their current, respective access providers. Thus, they would not have to set up a new account with an internet service provider. Those with only an internet account would also have full access. Internet Relay Chat (IRC) could provide LIVE, MODERATED forums at which those present could interact directly with each other, the moderator, and professional *guests* selected and invited to participate by the moderator. Participants could question the guests live. We've heard that there's a chap in the meteorolgy department of Florida State University who might be ideal for the position of moderator. There would eventually be direct HYPERTEXT LINKS to every ALS/MND medical facility, organization, chapter, support group, and research site in the world with a computer and a modem. Each could post their newsletters, services, announcements, etc. for all to see. Finally, there could be bulletin boards with postings controlled by the webmaster(s) to keep out the quacks or others who would try to take advantage of the users. Please let me know what you think of our idea and if you could participate with us. Sincerely, Dick and Eva Price Dick Price dickp@icu.com ===== = Dear Dick & Eva, = I am so busy with production of the ALS Digest that I would not = be able to be a good co-worker on the ALS www home page, but I = think others will be able to help. It is important that we get = the good word out about your effort so interested people will be = able to contact you. So thanks for giving permission to post your = note ... and please keep us informed about progress of your project. = Along these lines, here are a few other online type things that are = needed by the ALS/MND community: (1) a Usenet newsgroup for ALS, = (2) an Internet LISTSERV setup for ALS, (3) an Apple Mac expert who = can create and distribute Mac-formatted diskettes with back issues of = the ALS Digest (4) a MEDLINE user who could keep us informed about = current ALS-related citations. For sure there are other things = that need to be done (like for instance, finding a cure) ... but = these come to mind immediately. = Again, thanks for telling us about your project. rgds,bro ===== (4) ===== a poem ========== >From : pat.younger.20@aspenpub.com (Pat Younger) Subject: poems Date : Mon, 16 Oct 1995 21:35:28 GMT I posted a message asking if anyone was interested in a poem written by Robin Brown, a poet (and friend, and hospice patient) with ALS. Dr. Rudminsky said he would like to understand the frame of mind of an ALS patient. I believe that shifts into more complicated planes more often than the minds of most people. I would like to post one of her poems, as she asked me to do so. IN HONOR AND MEMORY OF FRIENDS AND LOVED ONES BY ROBIN BROWN Remember the day you were told, Some were young, some were old, The words ALS, then Lou Gehrig. No! Why? Not me!! Mad and confused, it had hit home. To live with Lou Gehig is to die slow. Trapped in a body where no one knows Why, or when. It's just within. You must decide how to handle the madness, The hate, the rage within. Crying, And the denial. It can't happen. Not to me. Young or old, ALS takes its toll As it steals life and frees the soul. As they stay through the night, Trying to understand, Loved ones hold tight, As they pray with worried eyes, Holding back tears. Standing strong Along side us, trying to help But feeling helpless. As they watch, are dreams stolen, With independence slowly disappearing This night. What's wrong or right. Doing as we ask, this time there would be No miracle drug. But the dream would not die With me. My memories and dreams Will live on, through loved ones and friends. By their faith and hope, Amiracle will be found for all of us, Who have been touched by the legacy Of Lou Gehrig. The Iron Horse himself. (5) ===== letter from ALS patient ========== >From : rbroden@mailhost.alaska.net Date : Sun, 22 Oct 1995 20:20:43 +0000 Subject: letter from ALS patient The following is an open letter that my wife's father, Oscar Noreuil, Jr., wrote about a year ago. I would appreciate its inclusion in an issue of the ALS digest. My wife and I would appreciate any feedback about his comments. THE FOLLOWING MAXIM IS NOT AN ILLUSION; IT IS MY PERSONAL LIVING EXPERIENCE: My illness appeared to have started about four and a half years ago after shoveling snow. I developed a bad head cold -- a severe headache that night -- and two days later, a large ganglium in the right side of my neck erupted and a rash (viral shingles) covered my right arm all the way down to my hand, partially damaging the nerves in the right arm. Several weeks later, leg cramps developed and have continued to the present day. In addition, fever blisters appeared on my lips. Ten months later, a rash appeared on my arms, legs, back and abdomen, and has remained to present date. It is my firm conclusion that the severe head cold four and half years ago triggered the specific parasitic viral attack which invaded my nerve cell bodies and has changed the chemical activities within these nerve cells, producing my sporadic ALS. Drs. Mokri, Sinaki, and Mulder are exactly correct when they speak of ALS being a slow virus causing gradual damage to the nervous system, and a viral theory that has been proven in other neurological diseases. I firmly believe the cure for sporadic ALS lies in another virus (beneficially altered virus) to counteract or change the biochemical make-up of the viral DNA which is causing my sporadic ALS. Dr. W. French Anderson: "It took humankind 4 million years to penetrate the human gene -- ONLY by using a beneficially altered virus." Logically Speaking, Oscar Noreuil, Jr. In the year since he wrote this letter, Oscar's ALS has continued to progress. He would appreciate any kind of new information as well as letters of encouragement. His home address is: Ocsar Noreuil, Jr. 2201 West Iles Springfield, Illinois 62704 Thanks a lot for the E-mail subscription to the ALS digest. We find it very informative. Sincerely, Ron Broden (6) ===== CEPHALON SUBMITS TREATMENT IND FOR MYOTROPHIN TO FDA ========== WEST CHESTER, Pa., Oct. 23 /PRNewswire/ -- Cephalon, Inc. (Nasdaq: CEPH) announced today that it has submitted a treatment investigational new drug application (T-IND) to the U.S. Food and Drug Administration for Myotrophin (R) (rhIGF-1), Cephalon's investigational therapy for amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease). The treatment IND mechanism was developed by the FDA to enable patients suffering from serious or life-threatening diseases to receive promising new drugs prior to their formal clearance by the agency when no other effective therapies are available. If the application is cleared by regulatory authorities, Cephalon will be in a position to make available limited supplies of Myotrophin to patients with this devastating and fatal neurological disorder. Patients would be chosen to participate in the T-IND program by computerized random selection, based upon available drug supply. Cephalon is developing Myotrophin in North America and Europe for the treatment of ALS in collaboration with Chiron Corporation (Nasdaq: CHIR) and on behalf of Cephalon Clinical Partners, L.P. "We are pleased to take the first step toward gaining expanded access to Myotrophin for patients with ALS," said Frank Baldino, Jr., Ph.D., Cephalon's President and CEO. "We have been working diligently with our partner, Chiron, to increase drug inventory and will be working closely with the FDA so that we might make this promising new therapy available to patients who did not have the opportunity to participate in our clinical studies." The T-IND submission was based on data from a 266-patient, double-blind, placebo-controlled Phase III study conducted at eight medical centers in North America. In June, Cephalon reported positive results from this study at a session of the World Federation of Neurology Committee on Motor Neuron Diseases in Talloires, France. Cephalon is also developing Myotrophin in Japan for use in ALS and other neuromuscular disorders in collaboration with Kyowa Hakko Kogyo Co., Ltd. Cephalon discovers, develops and markets pharmaceutical products for the treatment of neurological disorders. The company's principal focus is on neurological disorders such as ALS, narcolepsy, peripheral neuropathies, Alzheimer's disease, head and spinal injury, and stroke. 10/23/95 /EDITORS' ADVISORY: Details of the program will be available upon regulatory clearance. General information on Myotrophin is available by calling 1-800-797-0705. CONTACT: Jason Rubin or Mary Fisher of Cephalon, 610-344-0200 (7) ===== help ========== >From : chenyu@admin.cabot.nf.ca Newsgroups: alt.drugs Subject : help Date : 22 Oct 95 01:58:25 +1000 Organization: Cabot College, Newfoundland, Canada Motor Neurone Disease [Clinical manifestation]: The patient is 40 years old male and got the disease when he was 35. It has been made a definite diagonosis as amyotrophic lateral sclerosis. The right hand, right arm and the right foot started in to feel sore in 1990, and the hand and arm have withered (amyotrophied). The temperature of these parts is lower than normal, particularly in winters. When holding a pen, the right hand thumb trembles spontaneously and continually. We hope to find a good way for curing this disease via Internet. [key words]: motor neurone disease, amyotrophic lateral sclerosis neuropathist (neurologist), neurology. (8) ===== information ========== Date : Sun, 22 Oct 1995 13:45:07 -0400 >From : MLC23@aol.com Subject: RE: INFORMATION Our Mom's ALS has beginning with Bulbar palsy - and I have done quite a bit of research into products that would be helpful to her. One thought that you might want to pass on.... My sister and brother decided early on that I would be the one, who would go with Mother to all the Dr. appointments, so that the medical information (keep a notebook of everything whether it seems important at the time or not) would all be funneled to me. That way one sibling knew all the information and dispersed it to the others. It has worked quite well this way and also given me an opportunity to get to know her doctors and for her doctors to know us. I find it very interesting to note how many people have written about the onset of ALS after a traumatic injury. My Mom had a very bad fall and it was the beginning of her symptoms. A little over a year and a half later she was diagnosed with ALS. Her first symptoms were choking while drinking tea or water, a constant runny nose - like a cold or sinus problem and then last summer the slurred speech. Mom is now in a trial study of BDNF through the Brigham and Women Hospital and we are aware of a positive difference in her breathing. I hope some of this information is of help to others: LIST: PROBLEMS IN DRINKING 1. PLASTIC STRAWS: you can find these in the children's section of party goods - they are usually curly - to straighten just put in boiling water and they uncurl - cut to desired length - Try many sizes in diameter to see which is best - they are good for drinking hot and cold liquids and can go through the dishwasher. 2. THICK-IT is a product you can get from the drug store it thickens liquid to varying consistencies making clear liquid easier to drink. Milani Foods, 2525 Armitage Ave., Melrose Park. IL. 60160 Tel: 800-333-0003 or 312 - 450-3138. 3. HONEY is useful in helping food that gets stuck to slide down. 4. IPECAC - use 6 to 8 drops - if helps dissolve phlegm caught in the throat. Remember in larger quantities it can make you vomit. 5. CUSTARD- food with soybean, custard like consistency seem to be easier to swallow. 6. CARBONATED AND COLD DRINKS are easier to swallow. 7. There are 4 companies who provide drinks and other foods easy to swallow. A. ENSURE - Ross Medical 800-544-7495 They make more products than you see in the stores and can be ordered directly from the co. They make 4 flavors, vanilla, chocklate, butterscotch, and tapioca - the drinks range from 250 to 350 calories and puddings are 225 calories. They also have food for tube feedings. B. SCANDISHAKE- 600 calories per drink - must be ordered from the drug store. comes in large product containers of single serving envelopes - vanilla, chocolate and strawberry. Scandipharm, 22 Inverness Center Parkway, Birmingham, ALA. 35242 Tel: 800-950-8085 or 205-991-8085. Mom say they taste great! C. SUSTACAL , The company will talk with you and you can order liquid - chocklate, strawberry and eggnog. They also have puddings that can be ordered by the case. Mead Johnson, Evansville, IND. 47721 - nutrition line 800-247-7893 D. SANDOS, 5320 West 23rd , P.O. Box 370, Minneapolis, Min. 800-333-3785 They also make a variety of drinks and tube feeding liquids. 7. PROBLEMS IN TALKING: A. The TTY 8840 telephones from AT&T are a God send to my mother and her friends. We have been able to send out many machines to family and friends - it has reopened Mom's world and she now talks to family and friends daily. They are easy to use - I can speak to her normally and she types her responses. Each person needs a phone to receive her typed conversation. Don't forget to ask for a discount if you are going to buy more than one phone - I did and I got one. B. ASSISTED CALLS There is also the assisted calling through the phone CO. with that system I can talk to Mom and she types her responses to an operator and the operator reads the message to me. This is for people who don't have a TTY phone. As long as the PALS has the TTY you can use this service. C. LIGHT WRITER there is also hand held devises such as the Light Writer - Zygo Industries, P.O. Box 1008, Portland, Or. 97207 - 800-234-6006 This a small typewriter devise that has a voice. This is also easy and my Mom took to it quite quickly - D. WORDS + is a system for those who can handle a more complex system WORDS+ , 40015 sierra Highway, Palmdale, CA 93550 - 800-869-8521 or 805-266-8500 E. ADAPTED CONSULTANTS - Steve and Wendy Waters have a lot of information to help PALS - 800-515-9169 8. AIDS TO HELP GETTING OUT OF CHAIRS A. EZ-UP chair , Alda Artherapedic Division, VIVA Medical Science Corp., 106 Access Road, Norwood, MA 02062 800-544-9769 B. Whittaker Products, 2 Kuneholm Drive, Holliston, MA 800-445-4387 or 508-429-6971 9. ALS NATIONAL OFFICE - 21021 Ventura BLVD. Suite #321, Woodland Hills, CA 91364 800-782-4747 or 818-340-7500 they were very helpful and sent me quantities of info. 10. MDA National Headquarters , 3300 East Sunrise Drive, Tuscon, AZ. 85718 800-572-1717 - also some good info We hope this information will help - and again thanks for the Digest - Marie and Ronney (MLC23@aol.com) === end of als 221 ===