Date: Mon, 20 Nov 95 00:45:10 EST From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD224 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#224, 18 November 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 == == 1230+ 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 == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/alsig.htm == =============================================================== == A full set of back issues (on MSDOS 3.5 INCH HD diskette) == == are available by sending me your full mailing address. == == They are free-of-charge. International requests welcome. == =============================================================== CONTENTS OF THIS ISSUE: 1 .. ALS/MND on the Internet 2 .. ALS and the Microsoft Network 3 .. how to handle mucus? 4 .. TENS (re:ALSD223) 5 .. re: Unusual Symptoms (re:ALSD220) 6 .. Neurology Journal On-line at Washington University 7 .. ALS First Identified? 8 .. BDNF question 9 .. re: single switch computer/software 10 . Immune-globuline and ALS 11 . re: natural cures 12 . CNTF / CYTOTHERAPEUTICS (1) ===== ALS/MND on the Internet ========== Date : Mon, 13 Nov 1995 18:29:33 -0500 (EST) >From : alssoc@inforamp.net (Jan Rodman) Subject: ALS/MND on the Internet Further to Dick & Eva Price (ALSD221) and Andrew Furley (ALSD222). The ALS Society of Canada also plans to launch a web site for people with ALS, their families and caregivers, researchers and professional healthcare providers. We are still in the design stage and welcome comments and input from all Digest readers. Even after launch, many aspects will be under construction while we consider the best ways to communicate. We too believe a Usenet newsgroup would be one of the best forums for discussion as everyone with an Internet account would have access, unlike the Prodigy discussion group (which I still haven't been able to access). We are willing to submit an application to form a new newsgroup, and to moderate it. [We will post a notice to the Digest when votes are being tabulated.] Anyone interested in contributing to the development of our web site, which will include links to existing information and sites, and eventually to all international societies (when they develop home pages), or to the newsgroup formation process, please contact me by e-mail at the address below. Thanks. Jan Rodman =============================================== Jan Rodman, National Executive Director ALS Society of Canada "We're fighting Lou Gehrig's Disease with everything you give!" phone: 416-362-0269 or toll-free 1-800-267-4ALS (4257) fax: 416-362-0414 e-mail: alssoc@inforamp.net =============================================== (2) ===== ALS and the Microsoft Network ========== Date : Mon, 06 Nov 1995 15:08:22 EST >From : NATG59A@prodigy.com (MR JIM PAUL) Subject: MSN & ALS I have established a new A.L.S. Bulletin Board on the Microsoft Network. It takes some navigating to get there: 1) go to MSN Central 2)click on catagories 3)Click on health and fitness 4)click on public health 5)disabilities forum 6)disabilities BBS 7)disabilities support BBS 8)You are there!! ALS SUPPORT FORUM 9) MOST IMPORTANT -click on file--click on add to favorite places--so you can get there easier next time Looking forward to meeting some of you there! Peace and Joy, Jim Paul jpsilent@msn.com jpsilent@aol.com jimpaul@oeonline.com natg59a@prodigy.com (3) ===== how to handle mucus? ========== Date : Tue, 7 Nov 1995 15:07:15 -0500 >From : MADDYS110@aol.com Subject: ALS DIGEST My mom was diagnosed with ALS in Feb.of 1993. At this time all of her muscles have not been affected , but she cannot speak at all. She has been traeched and has been on a feeding tube since January of this year. She is 79 years old and each day seems to be getting weaker. Although some days she can get around pretty good. She is complaining of pain and weakness in her left arm and hand and more recently complains about her right arm. Her biggest complaint though, is the buildup of mucus in her mouth. She has a hard time opening her mouth, so it is difficult for her to get the mucus out. If anyone has any suggestions it would be greatly appreciated. Thanks for your help. Maddy (4) ===== TENS (re:ALSD223) ========== Date : Thu, 16 Nov 1995 16:20:51 -0500 >From : Terry Byles Subject: TENS I have been contacted by so many people about the use of TENS that it seems appropriate to answer here. First, the use of TENS for the strengthening of atrophied muscles seems experimental at best. The study at the Tohoku University only included one patient and he went on a respirator at the same time as the study (muscles that recieve more oxygen could certainly improve). The Study did show that there was increased strength and size of muscle after the TENS therapy. This is where there seems to be a huge word of CAUTION. With ALS, hard muscle use seems to promote more fasciculations and excitation that could lead to more nerve activity and more neural death. In the Tohoku study they used implanted electrodes and at high enough intensity to evoke a muscle contraction. At the Magee Clinic in Toronto, they use TES (therapeutic electrical stimulation) for rehabilitation for patients weakened by Post-Polio Syndrome. Their methodology differs from the Tohoku Study. They use a TENS UNIT on a low setting for many hours, even overnight, with very good results. This approach might be better suited to ALS patients so as to spare over working the muscles and creating more fatigue. If healing (possibly even strengthening of muscles) is inhanced by more blood flow to the effected area, then it stands to reason that TENS could be a therapy in ALS. I'm sure this raises more questions than it answers. Does anyone know of any Physical Therapist using any of these techniques for ALS? If you are going to a Physical Therapist ask them about this or ask your Doctor on your next visit. There must be someone who has some knowledge of this approach!!!!!! I am still continuing the use of a TENS unit on my right arm and hand. This will be the third week. Again, it is probably too early to see real results, but I feel better using the TENS. It certainly allows for easier range of motion exercising, and I don't feel the need for constantly stretching my arm muscles. If I get to the point of being able to write again that would be something of great measure. Again, a word of caution here. This approach still needs more research. Terry (5) ===== re: Unusual Symptoms (re:ALSD220) ========== Date : Mon, 23 Oct 95 10:23:27 +0100 >From : messinaa@agrmic04.sgs-thomson.it (Alessandro Messina) (ITALY) Subject: Re: Unusual Symptoms Cc : messinaa@gateway-gw.sgs-thomson.it I've been reading the ALS Digest for about one and a half year, at first because I was looking for info for a friend of mine's father, in Italy, who had been diagnosed with ALS. At that time I lived in Denver, Colo. Maybe some of you remember my postings and requests for help. I'm replying to this note because I've been experiencing the same symptoms since the beginning of this year. I feel the inner tremor only once in a while, and probably not such a disturbing one as you describe in your notes. But all the symptoms are similar, if not identical. Since I was already in contact with the ALS community, I started thinking about having ALS symptoms as soon as this tremor and random fasciculations started. Since when I was 16 I've been suffering of periodical strong headaches, due to the optical nerve, so I was already in contact with a neurologist. I've seen him 2/3 times this year, made 2 blood tests (to check for Magnesium, Calcium, and also thyroid) and they were OK, and also had an electromyogram (hope the spelling is correct), which showed presence of rare fasciculations. They say the results are normal, and just asked me to have periodical checks. My neurologist tends to rule out ALS too. He has a patient diagnosed with ALS, so I think he knows the problem very well. He said that there is a sindrome called "benign fasciculations". I'd like to get more info, too, if someone has more to tell. Thanks Alessandro ----- PLEASE, DO NOT REPLY TO MY EMAILS USING THE "Reply" BUTTON! PLEASE, ALWAYS WRITE THE FOLLOWING EMAIL ADDRESS, OTHERWISE YOUR MAIL WILL BE LOST. Alessandro Messina SGS-Thomson Microelectronics PPG Division Via C. Olivetti, 2 20041 Agrate Brianza (MI) - Italy Phone number: 039/6035695 (from USA: 011-39-39-6035695) Fax number : 039/6035960 e-mail address: messinaa@agrmic04.sgs-thomson.it (6) ===== Neurology Journal On-line at Washington University ========== Date : Tue, 07 Nov 1995 16:13:26 -0600 (CST) >From : cooperr@msm.wl.aecl.ca (Brian Cooper) (Canada) Subject: Neurology Journal On-line at Washington University This may have been noted in the Digest already, but the Department of Neurology at Washington University now offers an on-line journal at http://neuro.wustl.edu/journal.html The first issue has an excellent review by Price et al. on animal models for MND. Regards, Brian Cooper cooperr@wl.aecl.ca (7) ===== ALS First Identified? ========== Date : Fri, 10 Nov 1995 17:47:56 -0500 >From : APALS@aol.com Subject: ALS First Identified? I know that in the "early" days, ALS was often referred to as Motor Neuron Disease. I wonder if anyone has information relating to when this disease was first identified? Thank you. (8) ===== BDNF question ========== Date : Mon, 13 Nov 95 11:00:52 >From : Subject: ALS information I have a question that someone may be able to answer about the BDNF study that is taking place now. We were wondering if the portions of the brain that are used in making this drug come from the tissue in aborted babies. (9) ===== re: single switch computer/software ========== Date : Sat, 11 Nov 95 04:48:06 UT >From : "steve miller" Subject: A.L.S My father in law has a friend who is in the advanced stages of ALS. He has a single switch computer system that is his only means of communications. The only program that he has been able to get is a word processor type program. He has a very active mind and is in search of any type of software to help him pass time. I found you listed by doing a WEB search and would appreciate any help you could provide my father in law and his friend. If possible could you send any information or names of orginaztions or company that could help. Steve Miller ==== = You should contact the Trace Center; University of Wisconsin; S-151, = Waisman Center; 1500 Highland Avenue; Madison WI 53705 rgds,bro ==== (10) ===== Immune-globuline and ALS ========== Date : Sat, 28 Oct 1995 18:40:40 +0300 (EET) >From : Emre Alper Yildirim (TURKEY) Subject: Immune-globuline and ALS My father was diagnosed as having ALS four months ago. He has been prescribed with immune-globuline treatment (0.5 gr/kg) every month. If there is any feedback or current study about the effects of this treatment in ALS, I would appreciate it. Thanks... (11) ===== re: natural cures ========== Date : Thu, 9 Nov 1995 07:32:26 -0500 >From : DENFIN@aol.com Subject: Re: ALSD223 ALS-ON-LINE In a message dated 95-11-07 14:47:01 EST, Jack Norton writes in part: >My name is Jack Norton, I am married and have three young daughters. I am a >victim of the terminal illness, called ALS or Lou Gehrig's disease. I am >also a victim of a failed FDA drug approval process that has claimed >thousands of American lives. How were these lives lost? Through Apathy and >Lazy Science...... Dear Jack and others looking for help with ALS. Jack is right, both government and science work very slowly. That is one reason I have put together reported natural cures in an e-text to try to speed up verification of natural cures such as those reported by Hulda Clark, Ph.D., N.D. I have reviewed her text and other similar work in my e-text which I will mail to anyone interested at cost. I am trying to get the current edition on the Inet to decrease the cost even further. E-mail me at DENFIN@AOL.com for details. Dr. Clark is no quack, she has done some very interesting and unique science using very safe electrotherapy to kill off many pathogens that are behind many more diseases than many scientists currently realize. Sincerely, Dennis Fink Biochemist/E-text author (12) ===== CNTF / CYTOTHERAPEUTICS ========== PROVIDENCE, R.I., Nov. 15 /PRNewswire/ -- CytoTherapeutics, Inc. (Nasdaq: CTII) today announced that Patrick Aebischer, M.D., Ph.D., a founding scientist of the Company, reported preliminary results from a pilot clinical study of its novel amyotrophic lateral sclerosis (ALS) therapeutic product at the 25th Annual Meeting of the Society for Neuroscience in San Diego, California. The 10-patient study is the first reported human clinical trial for a cell-containing implant to deliver a recombinant protein within the central nervous system (CNS). Dr. Aebischer's study demonstrated the successful delivery of targeted levels of ciliary neurotrophic factor (CNTF), a growth factor under investigation to treat ALS. These results further demonstrated the ability of CytoTherapeutics' technology to deliver therapeutic substances across the blood-brain barrier of patients over a three-month period and longer. The patients have shown no weight loss, severe coughing or other serious side-effects over the course of the trial. "By safely delivering a growth factor directly to the central nervous system on a continuous basis, we have significantly impacted the potential for cell and gene therapy to address serious, chronic CNS disorders," said Dr. Aebischer, coordinator of the study and Director of the Gene Therapy Center at the Centre Hospitalier Universitaire Vaudois (CHUV) in Switzerland. "Neuronal growth factors have great potential for the treatment of serious neurological disorders if they can be delivered safely and effectively," said Seth A. Rudnick, M.D., CytoTherapeutics' Chairman and Chief Executive Officer. "In this pilot trial, we have shown the potential of our proprietary, encapsulated-cell technology to deliver targeted amounts of a potent, genetically engineered growth factor across the blood-brain barrier in a site-specific and safe manner. Our strategy is to build on this demonstrated success to deliver a variety of growth factors and other therapeutic substances to address a wide range of CNS disorders." Previous clinical trials of CNTF by other investigating groups were reportedly halted due to side-effects associated with systemic administra- tion of the factor. In contrast to CytoTherapeutics' approach, systemic administration requires relatively large quantities of a substance be administered in an attempt to assure that adequate amounts reach the targeted area of the CNS. Cell-containing implants used in this trial, however, are designed to deliver approximately 500 times less CNTF than that delivered systematically in previous trials, and to deliver the factor directly to the portion of the CNS where it is required. Dr. Aebischer reported that the cell-containing implants produced concentrations of 170-6,200 pg/ml of CNTF as measured in the patients' cerebrospinal fluid, with no detected levels of the factor in the blood of patients. The implants utilized in the trial contained non-human cells that had been genetically engineered to release CNTF. The cells were encapsulated within a membrane to protect them from the patient's immune system and to allow retrieval of the cells. The CNTF-releasing implants were surgically placed within the fluid space surrounding the spine in a surgical procedure similar to a spinal tap. Cerebrospinal fluid (CSF) samples were obtained at multiple time points and verified the presence of CNTF within the CSF over the course of the trial. Prior to implantation of the devices, none of the patients had detectable levels of CNTF in their CSF. After removal from the patients, 13 to 17 weeks following implantation, all devices showed good cell viability and CNTF output. All patients who have completed the first three months of the trial have elected to receive a second implant to be left in place for up to six months. CytoTherapeutics, Inc. is a leader in the development of proprietary products and technology designed to deliver therapeutic substances to the central nervous system (CNS). The Company's CNS-focused technology is designed to provide controlled, site-specific and safe delivery of a variety of novel therapeutic substances across the blood-brain barrier, potentially overcoming a fundamental obstacle in the effective treatment of CNS diseases. The Company is currently developing products for the treatment of chronic pain, ALS, Parkinson's disease and Alzheimer's disease, with additional research efforts directed to several other CNS disorders. CONTACT: Seth A. Rudnick, M.D., Chief Executive Officer, ext. 2113, or Elizabeth Razee, Manager, Corporate Communications, ext. 2132, both of CytoTherapeutics, 401-272-3310 === end of als 224 ===