Date: Thu, 10 Nov 94 12:13:26 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD145 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#145, 10 November 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. The ALS Digest is == == published (approximately) weekly. Currently there are == == 390+ 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 .. DBNF trail update 2 .. information request 3 .. Neuronal salvage 4 .. Citations for Tatton articles on nerve cell salvage 5 .. Deprenyl/Eldepryl 6 .. Alzheimers & Biotechs 7 .. Unique patient attitude? 8 .. E-Clips! 9 .. new web site (1) ===== BDNF trial update ========== Subject: BDNF trial update Date : Tue, 8 Nov 94 12:24:56 MST >From : "Gerald Armand Milette" Well, it's been over two months since I began the BDNF trial and over a month since I last reported my progress (sorry for sounding like a confessor). Unfortunately, I've suffered a couple of setbacks. In about the second week of October I contracted a cold from my wife, although I contribute the blame mainly on my failure to maintain my Vit C supplements in the month prior to the cold. The cold lasted for about a week, but the following week I discovered that a nagging cough which had been bothering me since before the trial began (and hence is `not' a side effect of the drug) had developed into interstitial pneumonia (`a diffuse, chronic inflammation of the lungs beyond the terminal bronchioles, characterized by fibrosis and collagen formation in the alveolar walls and by the presence of large mononuclear cells in the alveolar walls and spaces'. From Mosby's Medical dictionnary). The combination of these two afflictions left me tired and weak, and unable to keep up my excercise regimen. Furthermore, since such health problems tend to advance symptoms in ALS patients my previously- reported gains in muscle strength and control have been compromised and I am now experiencing continued deterioration. I would estimate that I am back to where I started before the drug trial began. The pneumonia has pretty much cleared up now, and I'm resuming my excercise program in the hope that I can offset the affects of the cold and pneumonia on my symptoms. So far there are no problematic side effects to the drug. I'll report back in a month or so. Gerry (2) ===== information request ========== Date : Wed, 09 Nov 1994 12:23:38 +0100 >From : Floor Weijnen Subject: information request I am a medical biologist from Holland. As I plan to perform research on the masticatory function of patients with ALS, Myasthenia Gravis and Myotonic Dystrophy, I would like to know if there are maillists on Myasthenia Gravis or Myotonic Dystrophy. In addition, I am looking for publications on measuring voluntary muscle activity with surface EMG's in Myasthenia Gravis patients. Does anyone have have any suggestions? Thanks! Florence Weijnen ======================================================================= Florence Weijnen Dept. Oral Physiology Faculty of Medicine Telephone +31-30-533096/533540 Utrecht University Fax +31-30-535537 P.O. Box 80.037 e-mail F.G.Weijnen@med.ruu.nl 3508 TA Utrecht The Netherlands ======================================================================= (3) ===== Neuronal salvage ========== Date : Tue, 8 Nov 1994 21:35:45 -0500 (EST) >From : NeuroScience Center at TMH Subject: Neuronal salvage Bob- If I had fully understood the applicability of this lecture to ALS at the time, I would have invited you. I have an audio cassette that I can make available to you. The essence is that -deprenyl administered directly into the blood stream (bypassing the GI tract) appears to rescue cells from death by apoptosis very effectively. The applicability to ALS is beyond my understanding, but essentially it stops nerve cells from dying. I will try to get some citations on Tatton's work from medline. Bill Tatton, M.D., Ph.D., a medical researcher at Dalhousie University in Halifax, Nova Scotia came to Tallahassee on November 3 and delivered a lecture about Cell Death and Salvage. What follows is my simplistic, non-scientific, business-degree, semi-clueless interpretation of his very scientific and chemistry-intensive stuff. Dr. Tatton talked about necrosis, in which cell walls deteriorate leading to cell death and apoptosis, cell death caused by DNA disintegration. Necrosis takes place in nerve cells immediately following trauma. Apoptosis follows over the next several days. An example he gave was a stroke. Immediately following insult cells in the affected area die of necrosis. The patient may then recover from this attack and go home, only to deteriorate over the next few days. In those few days, other cells are dying from apoptosis. -Deprenyl was effective in lab cultures in rescuing these cells from cell death by apoptosis by increasing Bcl-2 and decreasing Bax in the cells. These cells also took in less calcium into the mitochondria, kept high pH and electric potential differentials and all the other good stuff to keep cells alive (I'm no chemist.). Dr. Tatton and his researchers found that -deprenyl, when taken orally, is broken down in the GI tract into amphetamines and methamphetamines, which compete with -deprenyl for intake into nerve cells to protect them. So the component parts of deprenyl block its effectiveness by occupying receptor sites. The solution to this problem is to administer the drug intravenously or transdermally (we're talking patch). Bypassing the intestines allows more of the drug to reach the cells that need it and decreases competition with component parts (amphetamines). So why can't you get a prescription for deprenyl patches? Several drug companies are working on them. I don't know what the time horizon is before they will be available. Currently deprenyl is only available as Eldepryl in oral form. There promises to be some ownership disputes before a transdermal product can be brought to market (The lawyers have to get their piece of the action.). The presentation that Dr. Tatton made seemed very impressive. This could be breakthrough stuff for help to prolong the life of nerve cells. It would be useful in treating any disease in which progressive nerve cell death by apoptosis takes place. Chris @8) -- The NeuroScience Center neuro@freenet.scri.fsu.edu at Tallahassee Memorial (904) 681-5037 (4) ===== Citations for Tatton articles on nerve cell salvage ========== Date : Wed, 9 Nov 1994 13:59:04 -0500 (EST) >>From : NeuroScience Center at TMH Subject: Citations for Tatton articles on nerve cell salvage (fwd) In follow-up to my summary of Dr. Tatton's presentation at Tallahassee Memorial last week, I am sending these citations of his work. I recommend reading at least some of his research before clamoring for deprenyl now. I'm afraid my original message may not have carried a strong enough disclaimer. That message is my understanding of a topic that is way over my head and is subequently possibly riddled with misinterpretation. I am not a doctor. I can't give medical advice. Also, if you intend to sue I not only don't represent my employer, but I am also penniless, so don't bother. ;) SO, if you want to count on reliable information, sources are listed below. Document No : 93375335 Title : Rescue of axotomized immature rat facial motoneurons by : R(-)-deprenyl stereospecificity and independence from : monoamine oxidase inhibition. Author : Ansari KS; Yu PH; Kruck TP; Tatton WG Source : Journal of Neuroscience 1993 Sep;13(9):4042-53 Document No : 94335018 Title : (-)-Deprenyl alters the survival of adult murine facial : motoneurons after axotomy: increases in vulnerable C57BL : strain but decreases in motor neuron degeneration mutants. Author : Oh C; Murray B; Bhattacharya N; Holland D; Tatton WG Source : Journal of Neuroscience Research 1994 May 1;38(1):64-74 Document No : 94202245 Title : Increased CNTF gene expression in process-bearing astrocytes : following injury is augmented by R(-)-deprenyl. Author : Seniuk NA;Henderson JT;Tatton WG;Roder JC Source : Journal of Neuroscience Research 1994 Feb 1;37(2):278-86 Document No : 92243529 Title : Deprenyl reduces the death of motoneurons caused by axotomy. Author : Salo PT; Tatton WG Source : Journal of Neuroscience Research 1992 Feb;31(2):394-400 Document No : 92157181 Title : Rescue of dying neurons: a new action for deprenyl in MPTP : parkinsonism. Author : Tatton WG; Greenwood CE Source : Journal of Neuroscience Research 1991 Dec;30(4):666-72 Document No : 92240505 Title : Interactions between MPTP-induced and age-related neuronal : death in a murine model of Parkinson's disease. Author : Tatton WG; Greenwood CE; Seniuk NA; Salo PT Source : Canadian Journal of Neurological Sciences : 1992 Feb;19(1 Suppl):124-33 The focus of Dr. Tatton's research appears to be Parkinson's, but he mentioned in his lecture its application to ALS. e-mail me for abstracts Chris @8) -- The NeuroScience Center neuro@freenet.scri.fsu.edu at Tallahassee Memorial (904) 681-5037 (5) ===== Deprenyl/Eldepryl ========== Date : Wed, 09 Nov 1994 07:04:36 -0500 >From : rbm@hookup.net (Robert Macdonald) Subject: Deprenyl/Eldepryl I have started (2.5 weeks ago) taking Deprenyl. Maybe it's too early to tell but I seem to feel more uptight and frustrated than before, and my speech has got a little worse. Have any of you tried Deprenyl and what do you think of it? Thanks, Robert Macdonald rbm@hookup.net (6) ===== Alzheimers & Biotechs ========== OTC 11/08 1755 **** REPEAT **** /FROM PR NEWSWIRE WASHINGTON DC 202-347-5155/ -- NEWS ADVISORY -- TO NATIONAL AND HEALTH/MEDICAL EDITORS: BIOTECH INDUSTRY ORGANIZATION ALZHEIMER'S RESEARCH CONTACTS The announcement by former President Ronald Reagan that he is suffering from Alzheimer's disease has generated considerable public interest in this widespread condition. Since biotechnology companies are conducting research into this area, please find an initial list of contacts at BIO member companies involved in Alzheimer's disease research. We will add to it as additional contact names become available. BIO MEMBER COMPANIES CONDUCTING RESEARCH INTO ALZHEIMER'S DISEASE SCIOS NOVA 2450 Bayshore Parkway Mountain View, CA 94043 Contacts: Kira Bacon Director of Investor Relations 415-940-6629 Barbara Cordell, Ph.D. Vice President for Alzheimer's Research 415-940-6674 GLIATECH, INC. 23420 Commerce Park Road Cleveland, OH 44122 Contact: Thomas O. Osterling, Ph.D. President & CEO 216-831-3200 CYTOTHERAPEUTICS 2 Richmond Square Providence, RI 02906 Contact: Elizabeth Razee Manager, Corporate Communications 401-272-3310 CORTEX PHARMACEUTICALS, INC. 15241 Barranca Parkway Irvine, CA 92717 Contact: Peter Steinerman (Rudder-Finn Public Relations) 212-715-1677 CEPHALON, INC. 145 Brandywine Parkway West Chester, PA 19380 Contact: Jason Rubin Vice President for Communications 215-344-0200 AMERICAN BIOGENETICS SCIENCES, INC. 1385 Akron Street Copiague, NY 11726 Contact: Len Suroff Legal Counsel 516-789-2600 CONTACT: Eric Christensen, director of communications of Biotechnology Industry Organization 202-857-0244 or 202-857-0237. (7) ===== Unique patient attitude? ========== Date : Tue, 8 Nov 1994 00:25:29 -0600 (CST) >From : Clive David Subject: Unique patient attitude? In Stephen Hawking's book "Black Holes and Baby Universes", there is an intriguing comment attributed to him on p. 167. He is being interviewed by a broadcaster; the quotes are verbatim: Start quote:- SUE: You've even said in one interview that you thought you are happier now than before you were ill. STEPHEN: I certainly am happier now. Before I got motor neurone disease, I was bored with life. But the prospect of an early death made me realize life is really worth living. ... End quote. I wondered how many ALS patients have a similar outlook. ============================ |Clive David | |E-mail: cdavid@worf.uwsp.edu| ============================ (8) ===== E-Clips! ========== Date : Sat, 5 Nov 1994 11:18:08 -0500 Sender : Forum for Information Networking on Disability : >>From : ACCESS Foundation Subject: E-Clips! FREE Subscription [x-Post] E-CLIPS! On-Line Electronic Clipping Services are short quotes, citations or indications of previously published information we have found to be of special interest to our members and supporters. Sample Items this week: Issue #6, Nov'94 -- On-Line Resources for Persons with Disabilities + Accessing The Internet By E-Mail -- Navigating the Resources o Potpourri On-Line - References To References o Working From Home With Disabilities - Project Enable BBS o American's With Disabilities Newsletter -- Previews On-Line + Tap-Info to Tap-Into Gov-Info -- On-Line + Government Publications Network -- On-Line Catalogues o The Winsock Client Listing - InterNet Gopher Search Tools o National Disabled Law Officers Association -- Newslettre [+] Complete texts available on 3.5" floppies (DOS/Mac) Back Issues and Complete Table of Contents available, too! =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= Subscribe FREE, send: To: E-Clips Subject: Subscribe E-Clips Your First Name: Your Last Name: Today's Date: (9) ===== new web site ========== Date : Sat, 5 Nov 1994 08:33:07 -0700 >From : devaraja@well.com (Raja Hornstein) Subject: new web site Sender : alzheimer@wubios.wustl.edu I wanted the people who read this list to know of a web site I just put together for the San Francisco Zen Hospice Project. The URL is: http://www.well.com/Community/zenhospice/homepage.html The main work of the Zen Hospice Project is to provide volunteers to hospices and the educated the community about hospice work. We also run a small hospice ourselves. Most of the hospice work we do is for people who are medically indigent. The web site explains our work, has an extensive reading list and provides links to information about Cancer, AIDS, Alzheimer's disease, ageing, death and dying. If any of you have any comments about this web site, suggestions for links, or whatever, let me know by private email or through the response form at the site. Raja Hornstein devaraja@well.com "Save all beings from suffering" ==== end of als 145 ===