Date: Wed, 8 Mar 95 04:35:24 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#178 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#178, 08 March 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot'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 == == 540+ 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 .. Editorial/Announcement 2 .. ALS Digest back issues/index (1) 3 .. ALS Digest back issues/index (2) 4 .. ALS Digest back issues/index (3) 5 .. re: ALS info for the layman 6 .. Canadian Metabolic Therapist 7 .. Managing Swallowing Problems 8 .. How do you deal with stiffness? 9 .. Medtronic, Inc. 10 . new patent 11 . Genzyme Transgenics Corp. 12 . brainwave/computer link 13 . Internet Snake Oil (1) ===== Editorial/Announcement ========== A new on-line ALS discussion group will be starting soon. It will be an open and unmoderated "majordomo" e-mail list. Full details will be in the next issue. Today is March 8th ... International Women's Day. rgds,bro (2) ===== ALS Digest back issues/index (1) ========== Date : Fri, 03 Mar 1995 13:38:40 >From : Stuart.Neilson@brunel.ac.uk (hssrsdn) Subject: ALS Digests index online Dear ALS Networkers, I have just completed the first draft of an automated online indexing scheme for the back-issues of the ALS Digest. The index is an HTML document containing sets of keywords and links to the issues in which they have been used - so you can find, eg: all the issues of the Digest in which neurontin is mentioned. To try the index, go to: http://http1.brunel.ac.uk:8080/~hssrsdn/alsig.htm If anyone would like a plain text index, then I will be glad to create that too and mail it, place it on FTP or whatever. HELP REQUEST 1: Please mail me any comments, suggestions for keywords, topic groups and synonyms. I shall include all suggested keywords in the next draft of the index. HELP REQUEST 2: Does anyone wish to send me, or specially write, a document to place on the ALS web pages? I would really like a layperson's guide to ALS (symptoms, diagnosis, outlook, life with ALS), but other "reference" type documents are welcome. I have already put up an international list of organisations and links to related web sites, so please try them out. Best wishes, Stuart. EMail: stuart.neilson@brunel.ac.uk WWW: http://http1.brunel.ac.uk:8080/~hssrsdn/ (My home page) (3) ===== ALS Digest back issues/index (2) ========== Date : Tue, 07 Mar 1995 10:34:25 >From : Stuart.Neilson@brunel.ac.uk (hssrsdn) Subject: ALS Digest Index My apologies to anyone who tried unsuccessfully to locate the index via the Web. I dropped a directory from the address, which should read: http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/alsig.htm The character at the end of http1 is a digit one and the character at the start of ~hssrsdn is a tilda (a raised squiggle) - but it might not look the same on non-DOS software! The file extension really IS ".htm" and not the conventional ".html" - this is also a consequence of using DOS. You can also navigate from the home page listed below. Best wishes to all, Stuart Neilson. EMail: stuart.neilson@brunel.ac.uk WWW: http://http1.brunel.ac.uk/~hssrsdn/ (4) ===== ALS Digest back issues/index (3) ========== Date : Tue, 7 Mar 1995 08:46:58 +0000 (GMT) >From : Nyall McCavitt Subject: Re: ALS Digests index online (fwd) On Mon, 6 Mar 1995, Leigh Redding wrote: > Stuart, > Try 2. I'm getting closer. > I am now getting "The requested URL /~hssrsdn/alsig.htm was not found on > this server." > Guess what, I can now read! Look at the 2nd line: > http://http1.brunel.ac.uk:8080/~hssrsdn/alsig.htm > http://httpl.brunel.ac.uk:8080/~hssrsdn/alsig.htm > ^ The URL that you should be using is: http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/alsig.htm The ~ character in front of hssrsdn is standard Unix. Nyall *************************************************************************** *Nyall McCavitt, User Support Office, Computer Centre, Brunel University * *Uxbridge, Middlesex, UB8 3PH. email:nyall@brunel.ac.uk, voice:01895 * *274000 extn 2588 fax: 01895 252691,http://http1.brunel.ac.uk:8080/~nyall/* *************************************************************************** (5) ===== re: ALS info for the layman ========== >From: brownb@ohsu.edu (Elizabeth_Eileen Brown) Date: Tue Mar 7 9:20:07 PST 1995 Subject: Re: ALS Andrew, In response to your inquiry regarding whether or not I have layman info on ALS...yes. Please provide a mailing address so I can send you the information. Also, if you have any specific concerns, i.e. managemnt, care, ventilatory issues etc. I look forward to hearing from you again. Thank you for your inquiry. Sincerely, Beth Brown (6) ===== Canadian Metabolic Therapist ========== Date : Tue, 7 Mar 1995 17:02:12 -0500 >From : APALS@aol.com Subject: Canadian Metabolic Therapist Following are the name and address of the Metabolic Therapist in Canada who people have recently been inquiring about: Frank Ludde, M.T. Metabolic Therapist 111 - 1531 Lonsdale Avenue North Vancouver, B.C. V7M 3L6 CANADA His assistant, Alannah Sandwell is available by telephone between the hours of 12:00-6:00pm, Pacific Time. She may be reached at 604-988-8213 and if you wish, will arrange a time for a telephone interview with Mr. Ludde. Best Wishes... A PALS and A PALS Wife (7) ===== Managing Swallowing Problems ========== Date : Mon, 27 Feb 1995 18:51:25 -0500 >From : rbm@hookup.net (Robert Macdonald) Subject: Managing Swallowing Problems Here is my next contribution. I hope it helps bulbar patients more than Riluzole(?) seems to be doing! All the best to you. Thanks. Robert Macdonald Managing Swallowing Problems ===================================== I am an ALS patient with Bulbar onset symptoms, diagnosed Feb. '94. Over the past year I have learned a lot about living with swallowing problems, including serious choking. I recognize that each case of ALS is different, and that being a progressive disease, solutions to patients problems are always changing. On the other hand Bulbar patients are particularly threatened by both choking and/or a lack of adequate nutrition. Because of this threat to Bulbar ALS patients, particularly while they are still able to eat, and vulnerable to choking, I have developed a list of does and don'ts, based on both my own experiences, and what I have read. What do you other Bulbar patients and/or caregivers out there, think of my list? 1. If you are unable to chew properly, and control your food with your tongue, never start to eat any pieces of food that are large enough to block your throat. 2. Mix your food, particularly if it is dry, with a sauce of other food that will act as a lubricant, and help food slide down your throat. 3. Swallow each bite before taking the next. Never let food build up in your throat. 4. Never eat food that will mat or stick together, such as fresh bread, or sticky desserts. 5. When swallowing, concentrate and keep your chin down. 6. Learn and practice early, what to do and what not to do when you start to choke, so that later on when it happens, you won't panic. 7. If you start to choke never drink water, which may block off air, and never let anyone hit you on your back, which may wedge food tighter in your throat. 8. Have a healthcare professional teach you and your caregiver(s) how to do the Hemlich, a technique for pushing a blockage out of your throat. 9. Another way to clear your throat is to try to relax, try to breath in slowly through your nose, and bend over with your down between your knees so that the food in your throat will move back into your mouth. It may be messy if your lips are too weak to hold the food in your mouth, but it's better than choking. 10. If coughing and/or saliva is a continuous problem, ask your doctor for a medication to reduce saliva. 11. Get a feeding tube as soon as your weight goes 10% to 15% below normal. Do it while will you are still relatively healthy, and able to maintain a diet of normal meals supplemented by tube feeding. The longer you can continue eating at least some natural foods the better. 12. Eating can be a dangerous activity for ALS patients with weak throat muscles. Learn as much as you can about your own limitations from a Speech Pathologist and other healthcare professionals. I would appreciate your comments and advice. Thanks. Robert Macdonald rbm@hookup.net (8) ===== How do you deal with stiffness? ========== Date : Tue, 7 Mar 1995 00:39:34 -0500 (EST) >From : WECK0820@duq3.cc.duq.edu Subject: How do you deal with stiffness? My mother was just diagnosed with ALS. Her only complaint is the stiffness in her legs. She can not walk right because she is so stiff. Are there any drugs, or even vitamins, that can reduce this stiffness in my mothers legs? I have read that magnesium is a nutrient that helps muscles relax, but I do not know if this will help. Any help anyone can give me regarding this will be appreciated very much. Thank you. My name is Brian and I may be reached at : Weck0820@duq3.cc.duq.edu (9) ===== Medtronic, Inc. ========== MEDTRONIC PROMOTES WARD, SELZER TO HEAD REALIGNED SECTIONS OF NEUROLOGICAL BUSINESS MINNEAPOLIS, March 2, /PRNewswire -- Medtronic, Inc. (NYSE: MDT) today announced the promotion of two executives in connection with realignment of its growing Neurological Business. Both promotions were effective March 1. Scott R. Ward was promoted to the position of Vice President and General Manager of the Drug Delivery business. Formerly director of Neurological Ventures projects seeking to apply Medtronic's implantable drug infusion technologies in the treatment of cerebral palsy and neurodegenerative diseases, Ward will add responsibilities for operations, marketing, quality and regulatory affairs for the entire Drug Delivery business. < parts deleted > The Medtronic Drug Delivery Business develops, manufactures and distributes implantable devices for the delivery of drugs to the central nervous system, including the SynchroMed(R) implantable, programmable drug pump. Introduced in 1988, this device is widely used in therapies for chronic intractable pain, spasticity of spinal cord and cerebral origin, and chemotherapy. Ward's organization is exploring drug delivery to the central nervous system for a variety of new indications, including the use of non-narcotic pain medications and a variety of neurotrophic compounds in treatment of Parkinson's Disease, Alzheimer's Disease, and Amyotrophic Lateral Sclerosis. < rest of article deleted > (10) ===== new patent ========== STEREOCHEMICAL TECHNOLOGY NEWS FEBRUARY 1995 New Compounds for Neurology Compounds of the type described as 12-heterosubstituted 6,11-ethano-6, 11-dihydrobenzo[b]quinolizinium salts have been patented (U.S. 5,380,729, issued to Diane DeHaven-Hudkins Jan. 10, 1995). They are said to have use for the treatment or prevention of neurodegenerative disorders as well as neurotoxic injuries. Neurodegenerative disorders include Alzheimer's, Parkinson's and Lou Gehrig diseases, as well as many others. < rest of article deleted > (11) ===== Genzyme Transgenics Corp. ========== 03/07 Scientists demonstrate first successful commercial scale infusion directly to central nervous system in animals BALTIMORE, Md.--(BUSINESS WIRE)--March 7, 1995--Scientists from TSI Mason Laboratories, an operating unit of Genzyme Transgenics Corp. (Nasdaq: GZTC), Framingham, Mass., today presented data at the 34th annual meeting of the Society of Toxicology, Baltimore, Md., demonstrating the first successful commercial scale infusion of a biopharmaceutical compound directly to the central nervous system in animals. This procedure is also the first of its kind to meet the U.S. Food and Drug Administration's good laboratory practices on a commercial scale. < parts deleted > Many nerve growth factors and other compounds for use in the potential treatment of neurodegenerative diseases, such as Parkinson's disease, Alzheimer's disease, and amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease, must be delivered directly into the intrathecal space, the area surrounding the spinal cord which directly connects to the central nervous system. Intrathecal adminstration offers the only viable route for delivery of these compounds, which cannot be administered systemically because they are metabolized by the liver and other organs before reaching the brain. < parts deleted > CONTACT: Genzyme Transgenics Corp. Kathleen Rinehart, 617/252-7570 John B. Green, 508/478-0877 (12) ===== brainwave/computer link ========== 03/06 THE SCIENCE TIMES: BRAINWAVE/COMPUTER LINK MAY ENABLE SEVERELY DISABLED TO COMMUNICATE By MALCOLM W. BROWNE, N.Y. Times News Service To be locked inside one's own head - unable to speak, move a muscle or even an eyeball - is perhaps the worst imprisonment a person can endure. But new techniques in electroencephalography may soon make it possible for a totally disabled person to communicate by directly controlling the faint electromagnetic signals emitted by his or her brain. < parts deleted > For the first time, scientists at the New York State Department of Health in Albany recently showed that it is possible for a person using brain wave control alone to move a computer cursor around a display screen. < parts deleted > With further improvements in control precision, a totally paralyzed person may be able to move a brain-controlled computer cursor to express thoughts to another person, to change the channel of a television set or perform other simple tasks that are now beyond the reach of many patients. Dr. Jonathan R. Wolpaw, who heads the project at the Health Department's Wadsworth Center for Laboratories and Research, said in an interview that although the technology is in its infancy, early results are so encouraging that a limited clinical trial will begin soon. < parts deleted > The mental tasks required of subjects at the Wadsworth Center in Albany are far more complex because they involve two separate channels of brain emissions, one used for moving a computer cursor up or down, and the other for moving it right or left. Wolpaw and his colleague at the center, Dr. Dennis J. McFarland, recently wrote in a paper in the journal Electroen- cephalography and Clinical Neurophysiology that subjects ``typically reported using imagery to control cursor movement, for example, running, to move the cursor down, or floating, to move it up.'' < parts deleted > Because the left and right hemispheres of the brain do different things, Wolpaw's group is looking for differences that can be used by a disabled subject to communicate with the outside world without moving or speaking. < parts deleted > Amazingly, an average person can quite quickly learn to do this and move a cursor around, although movements are crude; Wolpaw says that subjects cannot easily moderate the speed or distance of cursor movements, but must use a ``ballistic'' approach, pushing as hard as possible to move a cursor in a selected direction. < parts deleted > ``Because respirators can now keep severely paralyzed people alive indefinitely,'' Wolpaw said, ``more and more patients suffering from severe strokes or very advanced stages of amyotrophic lateral sclerosis - Lou Gehrig's disease - are surviving. In extreme cases they lack all speech and motor control and cannot even move their eyes to communicate. There are only a few thousand of these victims in the United States, but they desperately need some channel through which they can communicate with the outer world. Brain-computer communication may be an answer, and our research has been promising enough that we hope to begin a small clinical trial soon.'' < rest of article deleted > (13) ===== Internet Snake Oil ========== THE CINCINNATI POST 02/28/95 Editorials "Internet snake oil" Blockheaded political views spread via the Internet or on-line services do little tangible harm. The same can't be said for bum medical scoops passed to sick people plugged into computer networks. Last spring, an obscure epilepsy drug, Neurotin, was touted on a Prodigy data service used by patients with Lou Gehrig's disease - a paralyzing and fatal ailment. Scattered reports of improvement by a few Lou Gehrig sufferers sent thousands to doctors' offices, seeking a prescription. By now, reports The Wall Street Journal, a third of the estimated 30,000 Americans with the disease - also known as amyotrophic lateral sclerosis (ALS) - have taken Neurotin. Alas, the initial reports appear unfounded. Of 19 ALS-stricken Prodigy subscribers who claimed gains, three died within 12 weeks, while none showed lasting improvement. Breathing, talking and swallowing became harder for most. Also, Neurotin can cause side effects - as though ALS victims needed further health complications. A greater problem caused by computer scuttlebutt may affect clinical trials. Under Food and Drug Administration rules, researchers testing a new drug must set up a control group of patients, who receive an inert placebo. But with an alleged wonder compound such as Neurotin receiving on-line kudos, people with quick-killing diseases like ALS aren't keen on possibly getting shots of distilled water. Since crushing the electronic-information revolution isn't a live option, the task is to manage its ill effects on medical science. For a start, perhaps we should look on the bright side: Patients aprowl for on-line news about their diseases may be an adjunct to overworked physicians behind in their med-journal reading. Some democratization of the doctor-patient relationship isn't the worst horror of the Info Age. Also, perhaps it's time for the FDA to relax its control-group rule for the most terrible illnesses. People with ALS, for example, deserve a shot at something that really might work - even if it's a very long shot. === end of als 178 ===