Date: Fri, 28 Apr 95 14:16:32 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD188 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#188, 28 April 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 == == 660+ 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 2 .. Ask the Experts Conference in Boston 3 .. Breathing Easier 4 .. Feeding tubes 5 .. re: feeding tubes //reprint from DEC94// 6 .. re: feeding tubes (more) //reprint from DEC93// 7 .. re: feeding tube 8 .. ALS diagnosis 9 .. CNTF/ALS/CytoTherapeutics 10 . Smoking patch 11 . ALS Society of Canada 12 . re: ASK EXPERTS MEETING 13 . re: ask experts meeting 14 . re: Ask the Experts in Boston (1) ===== Editorial ========== There is a lot of activity but I need to keep each issue less than 20,000 characters so they will pass through all e-mail systems. Issue 189 will be published over the weekend. rgds,bro (2) ===== Ask the Experts conference in Boston ========== Date : Sun, 23 Apr 1995 23:03:15 EDT >From : LLBD81A@prodigy.com (DEBRA BULKELEY) Subject: Ask the experts conference in Boston =================================== The Massachusetts Chapter of the ALS Association is sponsoring an Ask the Experts conference on Sunday, April 30, from 1 to 4 p.m. at Massaschusetts General Hospital East in Charlestown, Mass. Leading ALS experts will discuss the latest research and clinical trials and how drugs get through the FDA pipeline. Attendees will have an opportunity to ask questions during the conference. The speakers will include: Dr. Robert Brown, Jr., director of the Cecil B. Day Laboratory for Neuromuscular Research, Mass. General Hospital East Dr. Theodore Munsat, director of neuromuscular research, New England Medical Center, Boston Dr. Jeremy Shefner, director, EMG Fellowship Program, co-director, MD Clinic, Brigham & Women's Hospital, Boston Dr. Richard Gan, assistant chief of neurology, outpatient clinic, Veterans' Hospital, Boston. If any of you would like to submit a question to the experts, please send it to Debra Bulkeley of the Mass. Chapter at the e-mail address: LLBD81A@prodigy.com =================== I will be happy to get answers to as many questions as possible during the Question and Answer segment of the conference. E-mail questions from the international community are especially welcome! Please end your question with your full name and the city and country where you live so this information can be included as your question is being asked. If any of you would like to personally attend the conference, please call the Chapter office for directions at 617-245-2133. Sincerely, Debra (3) ===== Breathing Easier ========== Breathing Easier 04/15/95 By LAURAN NEERGAARD, Associated Press Writer WASHINGTON (AP) -- Brad Smith was turned into a speechless invalid overnight when his doctor drilled a hole in his throat to pump air into his disease-weakened lungs. His doctor didn't know there was an alternative. Now a New Jersey physician is out to change that, sewing up patients' tracheas and helping them breathe again with a simple polio-era machine unearthed from a museum. "A week ago, I couldn't breathe on my own for five minutes, and today I've been fine for five hours and back at work," said Smith, a State Department terrorism specialist with Lou Gehrig's disease. "People like me are being put through a chamber of horrors and there's no need." < parts deleted > There is a non-invasive alternative that few doctors offer, contends Dr. John Bach of the University of Medicine and Dentistry of New Jersey. Key is a 1952 machine called the Cof-flator that, when held to the mouth, sucks air from the bronchial tubes to induce a cough that patients can't force unaided. Once patients can clear their lungs, they can breathe with standard oxygen masks or with an easily learned inhaling technique, says Bach, who travels the globe to push non-invasive respiratory care. Not every patient qualifies, cautioned Dr. Norma Braun, an American Lung Association specialist who also practices non-invasive respiratory care at Columbia University. Some are just too weak or don't do the techniques properly -- and it's not a cure for these ever-worsening diseases. < parts deleted > The Cof-flator had disappeared because, in the 1950s, tracheotomies replaced the cumbersome iron lung as the standard treatment for polio, and quickly spread to other ailments. With trach tubes, patients don't cough; their lungs are suctioned. But some polio patients at New York's Goldwater Memorial Hospital refused trachs, and many are still breathing with old Cof-flators 40 years later. If they could, Bach reasoned, so could others. He found a Cof-flator in a medical museum and talked the J.H. Emerson Co. of Cambridge, Mass., into updating it. In 1992, Emerson received government permission to sell its new In-Exsulflator. < rest of article deleted > (4) ===== Feeding tubes ========== Date : Thu, 27 Apr 1995 13:17:02 -0600 (CST) >From : "Kathy Martin" Subject: Feeding tubes Hello, We are wondering if anyone has current and/or first-hand information on the pros & cons of gastrostomy vs. esophagostomy as options for tube feeding. My mother, 77 yrs. old and diagnosed with ALS in Oct. 94, is ready to consider tube feeding in addition to oral feeding as long as she is able. We have the ALS Manual IV on Managing Swallowing Problems, but it has a publishing date of 1987. We would be grateful for any current info or references. Thanks very much, Kathy Martin University of Illinois Office of Women in International Development 320 International Studies Building 910 South Fifth Street Champaign, IL 61820 Phone: 217-333-1994 Fax: 217-333-6270 (5) ===== re: feeding tubes //reprint from DEC 94// ========== Date : 04 Jan 94 17:00:52 EST >From: Charles M Ward <72567.400@CompuServe.COM> Judi, Welcome to the group. I have some thoughts on feeding tubes you might consider. I think a feeding tube is very important when you get to where you need one. In ALS a constant complaint of people is they lost too much weight. You must keep your nutrition up so you feel good and can do things. Also you don't want to lose weight because you need the padding for comfort. Particularly on your bottom so you can continue to sit in a chair. Don't wait to have a feeding tube put in. Like in all things with ALS you must be prepared to start early with adaptive aids, it does no good to wait until the last moment. I have had a feeding tube for three years and have had zero problems with it. There are only advantages with feeding tubes. I have a feeding tube in my neck that goes directly into the esophigus. The local MDA doctor reccomends neck tubes over the more common stomach tubes because he says the stomach tube interferes with the diaphram and this leads to earlier breathing problems. Also the stomach tubes can leak and smell bad. It takes some looking to find an ENT who can do the surgery. It is done under a local anethetic and takes about an hour. You can still talk and eat after the operation. I had the surgery as soon as I started having trouble keeping my weight up. From then on I would eat what I could and then have the rest blended and put down the tube. Very easy! I find the neck tube to be great on the go. When I need water, medication or to eat I just stop and my aide pumps it in. People stare because it is unusual but it is perfectly normal to just syringe it in. I put a piece of silk tape around the tube when it is in position and pin the tape to my shirt. I leave the tube in permanently and change it every six months. It is very simple to change. Another advantage I have found came when I went on the respirator. To keep my lung secretions thin for easy suctioning I found that taking two cups of water every four hours did the trick. Again with the neck tube so easy to use this presents no problem. I strongly urge you to get a feeding tube earlier rather than later. There are no disadvantages. Send me a note if you have any questions. Yours, Mike Ward (6) ===== re: feeding tubes (more) //reprint from DEC93// ========== CompuServe Mail Date : 30-Dec-93 22:16 EST >From: MARTIN I. WEINBERGER [72724,324] Subj : Copy of: Feeding Tubes Hi, Judi, I'm principal caregiver for my wife, now aged 68, who has had ALS for 2-1/2 years. This summer she made a decision to go for a stomach feeding tube since her swallowing had become so difficult. Mealtimes were lasting 2-3 hours, even with pureed foods; she was not getting sufficient nutrition and particularly not getting enough liquids. She had a problem with excessive mucous and saliva which were difficult to manage. The physicians who recommended the procedure described it in terms which made it seem no more than a tooth extraction. Then we learned it required an overnight stay in the hospital which my wife dreaded. She is unable to communicate; cannot move her limbs; requires frequent turning during the night. I arranged with the hospital for a private room with a cot for me and they were very accommodating. What started out as an overnight stay turned into six nights in the hospital because of complications. The physicians never mentioned that there was a possibility of stomach distention and trapped air in the intestines. We opted for "bolus" feeding rather than "continuous drip" , not wanting to be tied down to a, IV bag all day. However, with feeding every 4 hours for nutrition, preceded by a digestive aid a half-hour before, and a laxative/fluid feeding in between, we are still ruled by the clock. Feedings are supposed to start at 6am (with medication at 5:30) but more often than not she refuses that one preferring to sleep. Since the tube was inserted she has taken nothing by mouth. Tried some apple sauce the first few days but gave it up. However, the mucuous problem ceased and the saliva build-up has been manageable. Tube's entry point needs careful cleaning each day - peroxide and change dressing - nothing complicated. Caregivers have had no trouble mastering the technique. The gastroenteroligist prescribed Osmoilite and she has been on that exclusively. If there is anything else that you think I can provide, don't hesitate. All the best to you and yours in the coming year. Marty (Compuserve 72724.324@CompuServe.com or America On Line MartyW3818@aol.com) (7) ===== re: feeding tube ========== Date : 27 Apr 95 16:10:08 EDT >From : Mike Ward <72567.400@compuserve.com> To : "\"Kathy Martin\"" Subject: Re: Feeding tubes Kathy, I have a neck tube. a nose tube is very irritateing and not suitable for long term use. Also a doctor must insert it because of the high probability of going into the lungs. A g tube works fine but the MDA doctor reccommended a neck tube because the g tube surgery disturbs the diaphram and results in reduced breatheing function. Not a good thing for ALS patients. Many doctors who are surprised I have a neck tube, when hearing what my doctor told me, say they have always wondered why their patients have respiratory reduction after g tube surgery. My neck tube was put in by a local ENT, Dr Gordon Summers. After the stoma heals there is minimal maintenence. The tube is easily changed when needed, about every three months. You can easily do it because the stoma goes directly into the esophogus. I have had no troubles at all, and find it is very convienient because when not in use I simply put it under my collar. I also find I can be fed in public with no problems. So I encourage you to look into a neck tube. Write if you have more questions. Mike (8) ===== ALS diagnosis ========== Date : Thu, 27 Apr 1995 15:22:27 -0400 >From : JanF@aol.com Subject: ALS diagnosis Currently, what is the best way to diagnose ALS? Is it done with any definitive tests, or is the diagnosis made simply by a process of elimination? Thanks, Jan France janf@aol.com (9) ===== CNTF/ALS/CytoTherapeutics ========== Membrane & Separation Technology News 04/01/95 BIOTECHNOLOGY/BIOMEDICAL:Cell Implants Enter Human Clinical Trials The first human clinical trial of a membrane-based, cell-containing implant intended to deliver a recombinant protein within the central nervous system (CNS) is underway in Europe, says CytoTherapeutics, Inc. (Two Richmond Square, Providence, RI 02906; Tel: 401/272-3310, Fax: 401/272-3485). The implants contain cells from a nun-human cell line genetically engineered to release ciliary neurotrophic factor (CNTF), a growth factor under investigation to treat amyotrophic lateral sclerosis (ALS). The cells are encapsulated in a membrane which protects them from the patients immune system (see MST, July 1994), and offers the ability to retrieve the cells, if this is desirable. The study is designed to test the safety of the implants in up to ten patients with ALS over a period of six months. The trial is being conducted by Patrick Aebischer, a founding scientist of CytoTherapeutics, at the Centre Hospitalier Universitaire Vaudois in Lausanne, Switzerland where he is Director of the Gene Therapy Center. < parts deleted > Aebischer comments, "The selection of CNTF as the first of several potential growth factors to deliver in humans was based on the profound unmet need in ALS treatment, and our belief that our delivery approach may overcome the difficulties CNTF has encountered when delivered by conventional approaches." The implants used in the trial contain CNTF-producing cells and measure about 5 cm in length and less that half a millimeter in diameter. The implants are placed at the base of the spine in a common, outpatient procedure similar to that of a spinal tap. After implantation within the spinal fluid, the implants deliver small quantities of biologically active CNTF, synthesized by the cells, directly to the neuronal cell bodies located within the spinal cord and the lower areas of the brain. (10) ===== Smoking patch ========== >From : sallitt@netcom.com (Dan Sallitt) Subject: Smoking patch Date : Wed, 26 Apr 1995 10:10:44 -0400 A friend of mine is suspicious that her bulbar-onset ALS condition may have had something to do with the anti-smoking patch that she was using around the time that her symptoms first appeared. Has anyone else heard of such a thing? - Dan Sallitt (sallitt@netcom.com) (11) ===== ALS Society of Canada ========== >From : "Grace Paterson" Date : Wed, 26 Apr 1995 09:37:07 AST Subject: Re: [HEALTHNET:19] ALS Society needs help with e-mail setup Your may be interested in ALS information on the Vancouver FreeNet accessible via dialup (604) 222-4723 or telnet to freenet.vancouver.bc.ca Login guest The Amyotropic Lateral Sclerosis Society of Canada was one of 3 original medical information providers to that service. * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Grace Paterson, MSc, NLM Fellow in Medical Informatics, MBL Course Medical Informatics Coordinator, Division of Medical Education Dalhousie University, Halifax NS B3H 4H7 grace.paterson@dal.ca (12) ===== re: ASK EXPERTS MEETING ========== Date : Tue, 25 Apr 1995 15:23:03 EDT >From : UKRY13A@prodigy.com (MR JOSEPH L SNYDER) Subject: Re: ASK EXPERTS MEETING DEBRA- ONE MORE QUESTION-DR. MENDELL OF OHIO STATE RAN HUMAN TRIALS USING TESTOSTERONE BEGINNING IN JAN 1994. I BELIEVE HE WAS LOOKING FOR 1-IMPACT ON PROGRESSION 2-MUSCLE TONE OF REMAINING MUSCLES. ANY RESULTS FROM THIS STUDY, IN PARTICULAR POINT #2. THANKS JOE SNYDER (13) ===== re: ask experts meeting ========== Date : Tue, 25 Apr 1995 15:02:53 EDT >From : UKRY13A@prodigy.com (MR JOSEPH L SNYDER) Subject: Re: ask experts meeting DEBRA-QUESTIONS FOR ALS MEETING ; 1-when will human tests for Cytotherapeutics technology begin in U.S. utilizing CNTF, BDNF, GDNF OR combinations ? 2. Any news on Cytotherapeutics human trial in Switzerland using CNTF ? Why not CNTF AND BDNF in combination ? 3. How are human tests using pumps to deliver cntf or bdnf directly to cns going ? 4. Why does medical community persist in years of subcutaneous delivery of the various als drugs when it now quite obvious that this delivery method does not pass the blood brain barrier ? 5 Amgen stated in annual report that it expects to conduct human trials of GDNF on parkinsons in 1995, WHY NOT ALS IN 1995 ? 6. WHEN will DR. Mitsumoto's combination cntf/bdnf human trial begin ? 7. Why does medical community persist in huge slow human trials of new als drugs costing hundreds of millions, would it not make more sense to conduct a larger quantity of creative smaller less expensive trials, with real time measurement systems so we wouldn't have to wait several years to find out if something works ? 8-What is the status of Regeneron's second generation cntf-AXOKINE ? It was rumored to be doing very well in animal tests and combination tests with bdnf, has it fallen victim to the problem stated in question 7 ? 9- I suspect there are several other potential next generation als drugs stymied by the mega million dollar fda test barrier, could you tell us please what else is cooking in the labs? JOE SNYDER LOUISVILLE KY USA, BDNF GUINEA PIG, SHAREHOLDER OF AMGEN, REGENERON, CEPHALON AND CYTOTHERAPEUTICS. THE TECHNOLOGY IS OUT THERE, BUT THE FDA IS IN THE WAY ! (14) ===== re: Ask the Experts Conference in Boston ========== Date : Thu, 27 Apr 1995 21:25:23 -0500 (CDT) >From : "C. Schaefer" Subject: Ask the Experts Conference in Boston The following was sent to the Ask the Expert Conference in Boston at the request of a friend with ALS. I would like to thank, in advance, Debra Bulkeley and the Massachusetts Chapter of the ALS Association for providing us this opportunity, and Mr. Broedel for the notification. 1. If disease history is 6 months to 1 year, and the patient feels like fascicultions were reduced after 1 month taking Neurontin (900 mgs daily), should patient expect much increased results if he switched to a Rilutec protocol? 2. How do Riluzole and Neurontin compare in clinical pharmacology? 3. If all appropriate testing is done and diagnosis is arrived at based upon no other rationale alternative diagnosis and you have 2nd opinion Doctor concur, would it be reasonable or appropriate to seek further diagnostic testing based on; abnormal slowing of motor conduction velocity in EMG results, chronic dizzy sensation since onset of the disease. These 2 issues are left unexplained in all medical reports. William Hill ALS Patient Oklahoma City, Oklahoma Mr. Hill and I would appreciate any information on these questions from any reliable source. Please send e-mail responces to cschaefe@empire.interstate.net.us for forwarding to Mr. Hill. cschaefe@empire.interstate.net.us === end of als 188 ===