=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#106, 14 June 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 == == 260+ 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 .. feeding tubes 2 .. feeding tubes #2 3 .. feeding tubes #3 4 .. Ongoing Trials List? 5 .. Clinical Trials Interest Group 6 .. ALS - Virus? 7 .. ALS - Guam 8 .. new technology aids conference (1) ===== feeding tubes ========== Date : Sun, 12 Jun 1994 21:11:39 -0400 (EDT) >From : BOBMCMICHAEL@delphi.com Subject: Feeding tubes There are two types of feeding tubes that are useful for long term use. The percutaneous gastrostomy, put in by a gastroenterologist, takes a half hour, and results in a tube that enters the stomach through the upper left abdomen. When one of my patients gets this, we generally admit him for four days (3 nights). The first 24 hours we use an IV to make sure the patient is well hydrated. We also use updraft treatments to make sure the lungs are clear and have no mucus plugs. The day afater the gastrostomy (sometimes called a PEG tube for short) is put in we contine the IV fluids, give antibiotics IV, and pain medication. The next day we begin using the tube and teach the patient and family how to use it. The fourth day the patient goes home. People who have active peptic ulcers, or who have had gastrectmony procedures may not be able to have this done. Diabetics may have poor gastrointestinal motility, which makes the stomach empty poorly. If this is a problem, there is a percutaneous gastrojejunostomy procedure, in which the tube goes into the small intestine from the stomach. I have no experience with the esophagostomy, in which a tube is introduced through the neck into the esophagus, via an entry that is created surgically. I think that the PEG is better cosmetically but I am not sure which procedure is better overall. I suspect that the PEG procedure is easier on the patient than the esophagostomy. Most patients who choose a PEG tube are glad that they did so. Robert McMichael, M.D. (2) ===== feeding tubes #2 ========== Date : 09 Jun 94 10:48:27 EDT >From : "MARTIN I. WEINBERGER" <72724.324@CompuServe.COM> Subject: ALS -- feeding tubes < re: ALS Digest #44 > Thanks for reprinting my feeding tube message. Is there a residual fee coming? I still stand by my message. There has been no problem with the feeding tube since its insertion and my wife's weight has stabilized with no further loss. I am concerned that the constant flexing of the tube will weaken it one of these days. A call to my gastroenterologist in expectation of problems just received assurances not to worry, so I have stopped worrying - but still concerned. Keep up the good work - I look forward to the ALS Digest. (3) ===== feeding tubes #3 ========== Date : 09 Jun 94 15:38:07 EDT >From : Mike Ward <72567.400@CompuServe.COM> Subject: Re: ALS -- feeding tubes < re: ALS Digest #44 > Since I wrote this I have some futher points to add. I found gas to be a problem in the beginning. I now take 1 Gas pill in the morning with breakfast and one with dinner. Then I have my aides syringe out all the stomach contents and air before giving me water or a meal. If a lot of liquid comes out they just put it back in. This has eliminated the gas problem. Also the feeding syringes can last for weeks if you take care of them. We store them with the plunger halfway down and syringe up mineral oil to lubricate them. I am a strong believer in neck tubes. They are very easy to use and have none of the problems experienced in stomach tubes. Thanks, Mike (4) ===== Ongoing Trials List? ========== Topic 1394 Ongoing Trials List? bionet.neuroscience 7:26 am Jun 10, 1994 editress@aol.com Is there any master list of ongoing human trials studying neurologic diseases? For example, where a patient with a given disease could find out where in the country he or she might be able to enroll in an ongoing study? Thanks! (5) ===== Clinical Trials Interest Group ========== Date : Sun, 12 Jun 1994 04:00:35 GMT Sender : Hospital Computer Network Discussion Group and Data Base : >From : Paul Bleicher Subject: Clinical Trials Interest Group I have started a new mailing list for those interested in clinical trials The list was established as a forum for the exchange of ideas and information amongst a multi-disciplinary group of people who share a common interest in clinical trials. Members of the list include physicians from the pharmaceutical/biotech industry, academia and clinical trial sites, data management specialists and statisticians from academia and industry, representatives of the Food and Drug Administration, members of regulatory affairs departments, clinical research associates, study coordinators, research administrators, and others interested in the design, conduct, and analysis of clinical trials. To subscribe send an EMAIL message to: majordomo@world.std.com The body of the text should read (exactly as written): subscribe Clinical_Trials Information on the list will follow, including instructions on posting messages. (6) ===== ALS - Virus ? ========== RTw 06/10 1434 STUDY LINKS VIRUS WITH MOTOR NEURONE DISEASE LONDON, June 10 (Reuter) - Motor neurone disease, a progressive and fatal neurological disease, may be caused by a virus, British researchers reported on Friday. But a charity specialising in the disease said the report would raise false hopes among victims. The researchers, working at Ruchill Hospital in Glasgow, examined spinal cord tissue taken from the corpses of 13 motor neurone disease victims. They found nine of them contained a virus and concluded the patients had a chronic viral infection of the spinal cord, the report, published in the British Medical Journal, said. They recommended further research into the link between viruses and motor neurone disease, which is also known as Lou Gehrig's disease after the U.S. baseball player who died from it. British mathematician Stephen Hawking is another sufferer. The Motor Neurone Disease Association attacked the report, saying it misled victims. "It is most irresponsible of a prestigious medical magazine to raise false hope in thousands of people coping with this devastating condition," the charity said in a statement. Director Peter Cardy said nothing could be read into the initial results and the sample examined was very small. "There is no proof that the virus is part of the cause rather than the effect of motor neurone disease," he said. "False hope is much worse than no hope at all. There is a growing tendency in all publications to sensationalise and blow out of proportion any reports on research, even when it is in its earliest stages." Motor neurone disease is an incurable wasting disease in which the nerve cells controlling muscle movements gradually die, causing progressive weakness and paralysis. REUTER ==== == Peter Cardy == Motor Neurone Disease Association == P.O. Box 246 == Northampton NN1 2PR UNITED KINGDOM == TEL (44) 604 250505/22269 == FAX (44) 604 24726 ==== (7) ===== ALS - Guam ========== =============================================== Title : Concentrations of zinc and iron in the brains of : Guamanian patients with amyotrophic lateral sclerosis : and parkinsonism-dementia. Author : Yasui M; Ota K; Garruto RM Source : Neurotoxicology and Teratology 1993 Winter;14(4):445-50 Abstract : Simultaneous measurements of zinc (Zn) and iron (Fe) concentrations were determined using neutron activation analysis in gray and white matter of the frontal and occipital regions obtained from four patients with parkinsonism-dementia (PD), eight with amyotrophic lateral sclerosis (ALS), and four neurologically normal controls from Guam. Zn content in gray matter from the frontal cortex in ALS and PD cases was significantly decreased, compared with that of controls (p < 0.05). No significant differences were found in the Zn content of white matter from the frontal cortex, and/or gray and white matter from the occipital cortex between the groups. The Zn content in gray matter from both frontal and occipital regions was less in ALS and PD patients than in controls. Fe content in gray matter from the frontal cortex of ALS and PD increased significantly compared with that of controls (p < 0.05). Fe content in white matter from the frontal cortex in PD patients was greater than in controls (p < 0.05), with an overall difference: controls < ALS < PD. These data indicate that an increase in Fe in gray and white matter, and a decrease concentration of Zn in gray matter, combined with an excess and deficiency of bioavailable aluminum and calcium, respectively, may be involved in the pathogenic process of these disorders. =============================================== (8) ===== new technological aids conference ========== Date : Tue, 31 May 1994 16:24:10 EDT Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3480 THE HANDICAP DIGEST, Issue # 3480, Tuesday, May 31, 1994 To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send electronic mail to Bill McGarry at the following address: INTERNET: wtm@bunker.afd.olivetti.com Bill McGarry (Moderator) (203) 926-6187 Subject: CALL FOR PARTICIPATION >From: frontin@syn2.irit.fr (Jean Frontin) Organization: IRIT-UPS, Toulouse, FRANCE Symposium NEW TECHNOLOGICAL AIDS : INTEGRATION WAYS FOR DISABLED PEOPLE on October, 14th, 1994 in Toulouse (France) GIHP MIDI-PYRNES, a non-profit organization, organizes in Toulouse (France) on October, 14th, 1994, an european symposium "New technological aids : integration ways for disabled people". This symposium takes place in the FAUST (Arts Universe Sciences and Technologies Forum) biennal show. As part of the HELIOS II program for disabled people, this symposium has obtained the EC Commission financial support. This meeting will bring together specialists and users coming from various European countries. The issues of this event will be information and show about new technological aids for disabled people, which have been mostly perfected by handicapped persons. So, it will contribute to social and professional integration of disabled people in the ordinary nature. At the present time, GIHP MIDI-PYRNES is looking for specialists liable to expose their innovative technological fulfilments or projects to improve the everyday life of disabled people : in job, communication, housing, mobility, education, or leisure activities, etc. All people wanting to participate in this symposium must send to GIHP MIDI-PYRNES a content summary of his communication in one or two pages, before June, 20th 1994 to this following address : GIHP MIDI-PYRNES 10 Rue Jean Gilles 31100 TOULOUSE FRANCE Tel : 33/62.26.12.12 You can use the e.mail to send your text. frontin@irit.fr You will receive your acceptance before July, 31th. == end of als 106 ==