Date: Tue, 4 Jul 95 21:46:52 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD201 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#201, 04 July 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 == == 790+ 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 .. ALS Survey Preview 2 .. Wedemeyer 3 .. L-Arginine 4 .. re: Pain Management 5 .. When to Tell the World About the Good News 6 .. Amgen & Dr. Mitsumoto 7 .. Registration in Progress for Apoptosis Symposium 8 .. SOS! (from China) 9 .. PC Speech Assist: Northwest (1) ===== ALS Survey Preview ========== >From : Jerry Belsh Subject: ALS Survey Preview Date : Fri, 30 Jun 1995 15:47:31 -0400 (EDT) Dear Subscriber to ALS Digest: We are currently conducting an epidemiological survey of ALS patients via e-mail. Our Center has done previous studies relating to ALS, but the present research project is particularly interested in the patient's perspective. The survey consists of about 30 questions related to the ALS patient's diagnosis and management; they require short answers (usually the fill-in type). If you are willing to participate in this survey, or know an ALS patient who would be willing to complete the survey, please reply to us via e-mail at: === = als@umdnj.edu === We will then send each individual respondent the full questionnaire with instructions by return e-mail. You can be assured that all information will be held in strictest confidence. Data that might identify individual participants will not be released. Thank you for your interest. Elizabeth Lee, R. Ph., Patient Care Coordinator Neuromuscular & ALS Center University of Medicine & Dentistry of New Jersey Robert Wood Johnson Medical School New Brunswick, NJ 08903 -- Jerry Belsh M.D. Internet belsh@umdnj.edu Department of Neurology Tel: (908) 235-7340 UMDNJ-Robert Wood Johnson Med School Fax: (908) 235-7344 97 Paterson Street Home Tel/Fax(908) 819-8735 New Brunswick, NJ 08903 ==== = Would one of the Prodigy subscribers please pass this note to the = Prodigy ALS discussion group? Big Thanks! rgds,bro ==== (2) ===== Wedemeyer ========== >From : ianp@carina.unm.edu (ian FRIENDS.IN.TIME phillips) Subject: Date : Tue, 4 Jul 1995 17:48:25 -0600 (MDT) Does anyone have the address or email address and phone number of Charlie Wedemeyer, the Californian football coach who has had ALS nineteen years ? Thanks Ian Phillips (3) ===== L-Arginine ========== Date : Sat, 1 Jul 1995 14:11:45 -0400 >From : PRICEZRITE@aol.com To : SYKB36A@prodigy.com Cc : bro@huey.met.fsu.edu Subject: L-Arginine Read your posting in the ALS newsletter: Date : Fri, 16 Jun 1995 18:06:46 EDT >From : SYKB36A@prodigy.com (MR GERARD LAURENZANO) Subject: IGF-1 alternative treatment? As we wait for IGF-1 approval the following might be worth pursuing. This statement (by Sandy Shaw and Doug Pearson) is excerpted from "AGE News" p.5, April 1995. " ...We know two physicians who have done studies in small groups of patients with arginine-choline-B-5 supplements. In these studies (one was open, the other was double-blind, placebo controlled), women were given a dose of 12 grams of arginine, while men received 18 grams of arginine, in combination with choline (1 g per each 6 g of arginine) and vitamin B-5 (2/3 g of B-5 per each 6 g of arginine). Most subjects had at least DOUBLED IGF-1 levels." Paragraph omitted. "We would like to add arginine stimulates pituitary release of growth hormone via a cholinergic mechanism..." Gerry from NJ ========= I have SMA and began experimenting with L-Arginine about 3 yrs. ago. I take 4 grams of granules dissolved in warm water one hour before bedtime as the pituitary gland is most active right after we go to sleep. It's made a world of difference in my strength. I feel it's a step toward the answer, not the whole answer. Is the treatment in your posting taken orally, or by shots? Once/day or thru out the day? Any more info is appreciated. June Price (4) ===== re: Pain Management ========== Date : Wed, 28 Jun 1995 16:24:45 >From : Stuart.Neilson@brunel.ac.uk (hssrsdn) Subject: Pain management Scott Cunningham asks for references on pain management and patient management in ALS, which are probably of wide interest. Unfortunately, this appears to be an under-researched area. The following might help: "Motor neurone disease", Adrian Williams. London: Chapman and Hall, 1994. This is a comprehensive (755 pages) British review. "Motor neurone disease", David Oliver. London: Royal College of Practitioners, 1994. A brief (18 pages) pamphlett for GP's encountering MND for the first time. "Resources for ALS healthcare providers", ALS Society of Canada. Toronto: ALSSC, 1994. Designed for professionals and relatives involved with the care of people with MND. "ALS: A comprehensive guide to management", ed. Hiroshi Mitsumoto and Forbes Norris. New York: Demos, 1994. Intended primarily for professionals, but includes discussion of legal, ethical, social and spiritual issues. "Ethical considerations in the management of individuals with severe neuromuscular disorders", Bach, JR and Barnett, V. American Journal of Physical Medicine and Rehabilitation, 1994; 73(2): 134-140 and 1995; 74(1ss): s34-s40. (A full bibliography of ALS/MND publications can be found at the WWW address given below) Stuart Neilson (stuart.neilson@brunel.ac.uk) CSHSD, Brunel University (http://http2.brunel.ac.uk:8080/~hssrsdn/). (5) ===== When to Tell the World About the Good News ========== TITLE : When to Tell the World About the Good News : Why drug companies have a special responsibility DATE : 06/25/95 SOURCE: Los Angeles Times Probably nothing is more heartbreaking for people who suffer from debilitating diseases than to hear of a promising new drug or treatment long before its efficacy has been conclusively proven. This phenomenon has been magnified enormously in recent years by the revolution in biotechnology, particularly where it intersects with Wall Street. Consider, for example, the case of Cephalon Inc. of West Chester, Pa., and its highly touted new drug for amyotrophic lateral sclerosis, or ALS, a devastating neuromuscular disorder commonly known as Lou Gehrig's disease. < parts deleted > APPROVAL FAR AWAY: Yet the company will not apply for approval from the Food and Drug Administration before the end of the year while it conducts further tests, and many drugs founder in final studies. Some top ALS researchers had urged Cephalon to avoid the publicity until its research had been published in a peer-reviewed scientific journal. < parts deleted > Cephalon officials say they were obliged under securities laws to release any "material" information about the company to shareholders as soon as possible. The issue has much to do with the peculiar economics of the biotechnology industry. Still, Cephalon is highly regarded even by industry critics like Dr. Lewis P. Rowland, a top ALS expert at the Columbia-Presbyterian Medical Center in New York. He faults the company for seeking lay publicity but says he is nonetheless rooting for Myotrophin because "there is nothing else out there." < parts deleted > Often forgotten in all this are the needs of patients, their families and doctors. The Tucson-based Muscular Dystrophy Assn., which promotes research and treatment for 40 neuromuscular diseases including ALS, is planning a conference on how better to release data to the public. The FDA lacks jurisdiction over drugs until approved for marketing. It is thus incumbent on the drug companies and representatives of the afflicted to come up with a solution that both encourages investment in promising new drugs and also protects the ill, who thrive only on hope, from the cruelties of the stock market. (6) ===== Amgen & Dr. Mitsumoto ========== Date : Mon, 3 Jul 1995 23:05:25 -0400 (EDT) >From : WECK0820@duq3.cc.duq.edu Subject: Amgen & Dr. Mitsumoto PLEASE READ THIS!!! IT IS VERY IMPORTANT!!! My mother, Jean Weck, was recently told by Dr. Mitsumoto that she is no longer able to participate in the BDNF study at the Cleveland Clinic because she has supposedly violated the trial protocol by taking an overdose of a drug for depression called doxepin. I believe that excluding my mother from the trial is a very unethical decision on the part of Amgen Inc. and Dr. Mitsumoto. Ever since my mother was diagnosed with ALS, I had been trying to get my mother into a BDNF trial because I thought it was a very promising drug. At the time, I thought all my hard work finally paid off when Dr. Mitsumoto at the Cleveland Clinic allowed my mother to participate in his trial with BDNF. My mother was chosen because she was very cooperative, passed all the criteria with high marks and really was excited about participating in the trial. Also, even though Cleveland is 150 miles away from our home, Pittsburgh, our family believed it would be well worth the trip of the drug could possibly help. On Monday, June 19th, my mother was admitted to the hospital at the Cleveland Clinic so that she could receive the subcutaneous injection the next day. My mother would stay at the hospital until Wednesday, June 21st. I also stayed with her with her at her bedside the whole time, except at night. During her stay, my mother completely cooperated with everything the research nurse asked. My mother did not mind all the blood they had to take and how many times she was poked with needles. My mother was discharged right on schedule and we were told to bring her back to the hospital on the 26th of June so that she could receive the IV injection. We brought my mother up from Pittsburgh on the 25th of June and my mother and I stayed in the Cleveland Guesthouse so that she could be admitted on the 26th of June. My mother would stay until June 27th this time. My mother received the IV injection on the 26th. Again, my mother completely cooperated withe the research nurses. This time, they took more blood, jabbed her more times with needles, but she still did not mind. A lab technician at the Cleveland Clinic even took 5 vials of blood from my mom by MISTAKE. Some people would have been upset if someone accidently took more blood, but my mom just said, "He made a mistake, we all make mistakes sometimes." She forgave him. So, our family was happy that the worst part of the study was over. We were all looking forward to heading back on up to Cleveland on June 5th and receiving a supply of BDNF on an open label basis (which means she would be receiving the drug for sure) on June 5th. However, my mother has had some problems with depression ever since she was diagnosed with ALS. On June 27th, Dr. Mitsumoto prescribed an antidepressant drug called doxepin for my mother. The dosage was one 10mg capsule before bedtime. Anyone familiar with ALS knows that severe bouts of depression commonly occur in patients with ALS. Ever since my mother was diagnosed with ALS, her mood swings have been up and down. At one moment, she is content, the next very depressed. We were hoping the doxepin would help her. However, our family made the mistake of letting our mother dispense her own medicine. Unfortunately, on June 28th my mother was dispensing her own medicine at a time when she was very low and depressed. The result was that she took an overdose of the doxepin. During the early morning hours of June 29th, my mother was taken to a local hospital in Pittsburgh because my father noticed that my mother was slurring her speech more than normal and that the bottle of doxepin was empty. The dosage that my mother had taken was not harmful enough to cause any serious problems. My mother entered the psychiatric floor of the hospital on June 30th and was evaluated. We gave Dr. Fisher, a psychiatrist, and his nurse the right to contact the Cleveland Clinic to tell them about my mother's situation. On June 30th, Dr. Fisher adjusted my mother's dosage of doxepin to one 50mg capsule before bedtime. Dr. Fisher believed that the dosage of doxepin of one 10mg capsule before bedtime was insufficient. He also told us to dispense our mother's medication from now on. In his opinion, Dr Fisher believed my mother was doing a lot better on the higher dosage and that she could be released on Monday, July 3rd. My mother was released on July 3rd and came home. Dr. Fisher's nurse also assured us that my mother's recent episode would have no bearing on her eligiblity in the trial. When my mother came home, all she talked about was that she could not wait until July 5th. That is when she would be going up to Cleveland to receive a supply of the BDNF on an open label basis. However, we received a telephone call from Doreen Hinders, a research nurse at the Cleveland Clinic. She explained to us that my mother was no longer allowed to participate in the study because of what she had done. We told my mother the bad news and she began to cry. We all cried. We could not believe someone would do this to my mother and our family after all we have been through. My mother admits she made a mistake by doing what she did. She knows that what she did was wrong. My mother has always been a forgiving person. She wants us all to forgive her. We have forgiven her, but the people who are in charge of the BDNF trial will not forgive her. We all cannot understand why she can not be in the trial. It is WRONG to do this!!!! My mother was one of the last patients enrolled into this phase of the BDNF trials. She completed the main part of the study. My mother saw receiving the open label BDNF as a reward for entering the study. She gave so much, and has received nothing return. I ask all of those in the ALS community and those concerned about unethical decisions to help. Please voice your opinion that this decision by Dr. Mitsumoto and Amgen Inc. is VERY WRONG. Depression is a part of ALS and taking my mother out of the trial will only make her more depressed. Please help and help DO THE RIGHT THING. MY MOTHER SHOULD STILL BE ALLOWED TO BE IN THE BDNF TRIAL. AMGEN OWES MY MOTHER. SHE GAVE, THEY TOOK, AND RETURNED NOTHING. Again, my mother's name is Jean Weck. Voice your opinions by writing, faxing or calling the following: Dr. Hiroshi Mitsumoto The Cleveland Clinic Foundation Department of Neurology S90 9500 Euclid Avenue Cleveland, OH 44195 PHONE: (216) 444-5418 TOLL FREE: 1-800-223-2273 EXT. 45418 FAX: (216) 444-9401 Doreen Hinders (Same Address as above) PHONE: (216) 444-5538 TOLL FREE: 1-800-223-2273 EXT. 45538 PAGE #: 20391 Amgen Inc. 1840 DeHavilland Drive Thousand Oaks, CA 91320-1789 PHONE: 1-800-772-6436 ITT TELEX# 4994440 FAX: (818) 865-3707 Contacts at Amgen to ask for when calling or direct mail to: Barbara Thurman and/or Cindy Fuller My mother and my family thank all who help out. Thank you. Keep me up to date an posted: weck0820@duq3.cc.duq.edu Sincerely, Brian Weck (7) ===== Registration in Progress for Apoptosis Symposium ========== To : amyloid@net.bio.net >From : MANEV@SINGER.ASRI.EDU Subject: REGISTRATION IN PROGRESS FOR APOPTOSIS SYMPOSIUM ! Date : 26 Jun 1995 07:37:07 -0700 International Symposium on Oxidative Stress, Apoptosis and Brain Damage, September 21 to 24, 1995; Pittsburgh, PA, USA. Registration is in progress. For information and registration please call: + 412-359-4952 or fax to Ms. Kathleen Hrdlicka, Continuing Medical Education, AGH, 412-359-8218. (8) ===== SOS! (from China) ========== Date : Sun, 18 Jun 1995 18:17:39 -0500 (CDT) >From: chenrs@itp.ac.cn (Chen Run-sheng) SOS!!! Dear sir/madam This is Beijing, P. R. China. A woman, Sirou Zhang, has devoted all her life to teaching in China, a developing country, and she is still standing in the classroom. She loves her lovely pupils and all of them couldn't leave their respective "Grandma". But now she has become very sick and is dying. The illness is very rare. Though they have tried their best, doctors at the the best hospitals in Beijing cannot cure her; may do not even know what illness it is. So now we are asking the world---can somebody help us? This is a description of the illness: Our "Grandma" is a 62-year-old right-handed woman complaining of 4 months history of progressive weakness of her extremities. She first developed weakness of right lower limb 4 months ago. And weakness spread to the right upper limb then to the left lower limb in the following two months. She could't climb up stairs without help and walked with a walkstick during the early month. About 3 weeks before she was admitted to hospital, she felt that her voice was lower and her speech became slow and choked sometimes. And she had to leave her lovely pupils. She lost her weight for 4kg during the 4 months. She has no history of difficulty in urination and bowel movement. She was a thin woman and fully alert and oriented. Vital sign and general physical findings were almost normal. A neurological examination shows significantly asymmetrical limb weakness especially in right limbs, slightly decreased tone in the four limbs, loss of sensation at the level of T4 and a glove-stocking anethessia. The cranial nerves examinations showed only one abnormal finding that her tongue to the left. The vibration and joint positional sensation are normal. Reflexes are symmetrical and brisk. There is no signs of damage of cerebellam and pyramidal tract. Laberatory: Full blood cell count, electrolyte levels and liver, kidney, cardiac function are normal. The following laberatory are normal: serum anti-nuclear antibody, anti-smooth muscle antibody, anti-DNA, RF, ASO. T4, T3, TSH, CEA, AFP, and urinay Bence-Jones Protein. Among the serum immunoglobulins IgM level 432Iu/ml was slightly higher compared with the normal range from 66 to 279Iu/ml (repeat value of 361 IU/ml). Serum CK once was higher but normal latter.The repetitive low-freguency electical stimulation showed amplitode of waves decreased gradually for 48%. EMG (electromyogram) showed signs of neurogenous disease demage. The chest X-ray, an abdoment B-ultrasomic examination and the cerviel and cranio cerebral MRI were normal.A lumber puncture was performed and the cerebrospinal fluid pressure was 50mmH20, with a protein level 50mg/dl. Immuno- globulins synthetic rate of serum and CSF are nomal. The CSF and blood gluose concentrations were 49mg\dl and 121mg\dl, respectively. GI was negative. Two dimensional echocardiography was nomal. If you have heard of patients with similar symptom, or have any ideas as to what this illness could be, Please contact with us. We were her students before and we are disparate to help our deeply loved teacher. Please help us! Our E-mail address: Liangdc@bepc2.ihep.ac.cn or Chenrs@itp.ac.cn Please send back E-mail to us! We will send more complete description of her illness to you. Thank you very much National lab of Biomacromelecules Inst. Biophys. Beijing 100101 P.R.China June 16th, 1995 (9) ===== PC Speech Assist: Northwest ========== Date : Thu, 22 Jun 1995 01:44:45 -0400 >From : DanB5974@aol.com Subject: PC Speech Assist: Northwest ALS patients or caregivers in the Pacific Northwest/Puget Sound area, please take note. In ALS Digest 198, I talked about the HandiKey for Windows from MicroSystems, and hardware setup, for my friend Robert. He's now passed through the veil. His parents had purchased the equipment for him and are now offering it to someone who might need it. Rather find someone in the area who doesn't already have a system. It includes the good windows-based software that can cause audible messages and help compose letters. There is also an eyebrow switch, a soundblaster card, and software that will read text to the patient too. This particular setup is tuned to someone who can't talk much and hasn't control of the limbs. Daniel Baker, 206-488-6997. === end of als 201 ===