Date: Tue, 8 Nov 94 09:49:54 -0500 From: Bob Broedel To: Stuart.Neilson@brunel.ac.uk Subject: Re: ALS DIGEST BACK ISSUES =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#137, 23 October 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 == == 360+ 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 .. Confused about taking Neurontin with CNTF 2 .. Monitoring ALS Patients on a Continuing Basis 3 .. ALS organizational contact in Spain 4 .. Interferon Treatment 5 .. interferon beta 6 .. Telephone Assistance Devices 7 .. some questions 8 .. absurd alegations 9 .. FES-L discussion group 10 . NINDS (1) ===== Confused about taking Neurontin with CNTF ========== Date : Wed, 19 Oct 94 10:58:26 EST >From : "Mike Doliton" Subject: Confused about taking Neurontin with CNTF Mr. Robert Heston, I too have bulbar onset ALS. My neuro who was giving me CNTF agreed to give me Neurontin. He called the drug company and they agreed on taking Neurontin. So perhaps you could ask your CNTF neurologist to ask the drug company. Regards, Michael Doliton Sony Medical Systems (2) ===== Monitoring ALS Patients on a Continuing Basis ========== Date : Fri, 21 Oct 1994 14:49:41 -0400 >From : rbm@hookup.net (Robert Macdonald) Subject: Monitoring ALS Patients on a Continuing Basis I am an ALS patient (Bulbar and Familial). I am neither a Doctor or a Scientist. However, I am interested in montoring the chemicals in my body on a continuing basis to see if I can find some changing trends that might assist in finding a way to help counteract the degenerative process. The first problem is I don't know what to monitor! I've started with blood and urine tests, but even there I'm not sure what tests to ask for. I have 3 questions: 1. Could I find useful information by monitoring chemical changes in my body? 2. If so, what should I be testing for, with what type of tests and how often? 3. Are there other ways that I could make a contribution to the ALS community? Robert Macdonald rbm@hookup.net (3) ===== ALS organizational contact in Spain ========== Date : Fri, 21 Oct 1994 09:53:58 +0100 >From : iluengo@sunal1.mat.ucm.es (Ignacio Luengo Velasco) Subject: subscription to ALS digest Dear sir, I'm interested in subscribing to the ALS Digest. My wife is an ALS patient and we are members of the board of ADELA (spanish association of ALS (ALS is ELA in spanish)). I intend to distribute the interesting information between members of ADELA through our bymonthly bulletin. Also am interested in us having the past issues of the ALS digest. Yours sincerely. Ignacio Luengo Facultad de Matematicas Universidad Complutense de Madrid 28040 MADRID - Spain (4) ===== Interferon Treatment ========== Date : Wed, 19 Oct 94 19:36:30 EST >From : jsuarez@nsf.gov Subject: Interferon Treament If anybody has used Interferon "alpha" or "beta" in treating ALS or has any information about this please forword it to me as soon as possible. Javier Suarez jsuarez@nsf.gov (5) ===== interferon beta ========== ========================================================= Title : Dermal, serological and CSF changes in amyotrophic lateral : sclerosis with and without intrathecal interferon beta : treatment. Author : Westarp ME; Westphal KP; Kolde G; Wollinsky KH; Westarp MP; : Dickob M; Kornhuber HH Source : International Journal of Clinical Pharmacology, Therapy, & : Toxicology 1992 Mar;30(3):81-93 Abstract : In 12 patients with amyotrophic lateral sclerosis (ALS) participating in a therapeutic trial with intrathecally applied human fibroblast interferon-beta (IFN-beta) and in 9 untreated ALS patients, we found significantly elevated circulating serum IgG immune complexes (CIC), quantitative immunoglobulin changes, and creatine kinase (CK) elevation; CK reached significantly more often pathological levels in non-bulbar disease. Dermal ultrastructural changes were equally present in all treated as well as untreated ALS patients. Some time ago IL-6 was quantitatively cleaned out of the Fiblaferon-preparation. Erythrocyte sedimentation rate (ESR) rose during intrathecal IFN therapy in 9/10 ALS patients. In 4/4 adequately monitored motoneuron patients, this elevation coincided with a decrease of serum CK, while ESR and CK did not correlate in 60 non-ALS non-IFN neurological controls. Collagen ultrastructure, CSF total protein or barrier function, immune complexes, immunoglobulin quantitation and serum CK may contribute to differentiated diagnosis and should be included in future study protocols. (6) ===== Telephone Assistance Devices ========== Date : Thu, 20 Oct 94 12:17:06 MST >From : "gnicholas" Subject: Telephone Assistance Devices Mike, > From the notes you've posted via the ALS Digest, I find you to be a pretty well wired technology type person. Having said that I have a need, rather an individual in our ALS Support Group in Albuquerque has a need. He is looking for a telephone interface that is totally voice controlled. The SPRINT telephone system has a voice dialing option, but one needs to get the phone off- and on-hook. That is where the problem lies. He is the stage where that is no longer possible, and spends a lot of time home alone, lying on his back. We picked up a speaker phone for Dad, but Mom is always right there to operate the instrument, answering, placing and ending all the calls. Do have any knowledge of any such unit that we may be able to get our hands on for our friend? Thanks a lot for your time. Best Regards, Grant (7) ===== some questions ========== >From : ianp@carina.unm.edu (ian FRIENDS.IN.TIME phillips) Subject: Re: ALSD136 ALS-ON-LINE Date : Thu, 20 Oct 1994 15:40:03 -0600 (MDT) I would like to know if anyone knows of software that would allow me to use Windows with my Words Plus program. Also, does anyone know of an inexpensive book page turner? Thanks. Regarding ALS longevity here in Albuquerque we have a survivor of 13 years. Ian Phillips (8) ===== absurd alegations ========== Date : Fri, 21 Oct 1994 14:25:09 -0400 (EDT) >From : Tim Roxey Subject: absurd alegations I can and do sympathize with your plight. I am also the care giver of a wife who has ALS (bulbar onset > 5 years). We were recently asking each other 'when do you know its time for a wheel chair'. This question came about because of a serious fall that she took. It seems that the edge of a table stoped her across the forhead. The doctors said the she broke the small bones underneath her eye. They further said they would not operate on her at this point since the 'cure' would be worse than the break. She fell again a week later and this time clipped her ear on a stair. Fortunatly she has recovered from both of these accidents but they still raise the questions. When do you know its time for a chair - when you can't stand or walk, or when you can't take the pain from the falls? This leads you to the next set of questions - what is the usual first reaction from people outside the family when they see the signs of damage from a fall. Is it one of acqusation? or one of understanding? These questions become very real to caregivers - especillay if the loved one is very speech challenged and cannot refute the acquisitions. My very best to you in this difficulity . . . persevere bro :) (9) ===== FES-L discussion group ========== Date : Wed, 19 Oct 1994 12:39:03 -0600 Sender : Human Motor Skill Development List >From : Aleksandar Kostov Subject: New FES-L discussion group ------------------------------------------------------------------------ ################################################################## ############ ### #### ######### ################* ############ ######## ######## ############# ################** ############ #### ##### ### ### ################*** ############ ######## ############ ######## ################*** ############ ######## #### ########## ###########*** ##################################################################*** ******************************************************************** ********************* FES-L@UALTAVM.BITNET ************************ ****************************************************************** I would like to announce a new discussion group in the form of an automated mailing list using LISTSERV on Internet. The list was started in September 1994 and has already attracted more than 100 researchers from 14 countries. Please share this information with those who may be interested in subscribing to the list. This list (FES-L) should serve the members of international FES (Functional Electrical Stimulation) community allowing them to communicate their ideas, results and experiences in the fastest and most efficient way. FES is the use of electrical current to obtain controlled activation of the neuromuscular system, resulting in movement, sensory response or therapeutic effects. The members of the FES community are engineers (rehabilitation eng., electrical eng., mechanical eng., prosthetists, orthotists, etc.), clinicians (orthopedists, surgeons, physiotherapists, occupational therapists, etc.), technicians and final users. At the moment there is no other discussion group or automated mailing list which is dedicated to problems in this field. Members are encouraged to present their current problems, to respond to questions asked by others, to present in electronic form their most recent results and to advertise job openings. The ultimate goal of this discussion group is the promotion of FES as an efficient tool in the rehabilitation of people with lesions in their neuromuscular system. FES-L is an open, free of charge, unmoderated list, which means anyone can subscribe to it and then mail to it. However, abusive language, flames (personal attacks against individuals) or commercial solicitations will not be tolerated. Basic commands to subscribe, send messages and sign off are as follows: 1. TO SUBSRIBE to the list send the following message: SUBSCRIBE FES-L YourFirstName YourFamilyName to: LISTSERV@VM.UCS.UALBERTA.CA or LISTSERV@UALTAVM.BITNET Note: leave Subject line empty. 2. TO SEND YOUR CONTRIBUTIONS to the list send your message with appropriate Subject to: FES-L@VM.UCS.UALBERTA.CA or FES-L@UALTAVM.BITNET 3. TO LEAVE the list send the following message: UNSUBSCRIBE FES-L to: LISTSERV@VM.UCS.UALBERTA.CA or LISTSERV@UALTAVM.BITNET More details about LISTSERV commands are included in the welcome message which will be sent to you upon subscription. Happy FES-networking! ALEKSANDAR KOSTOV, FES-L list coordinator **************************************************************************** * ALEKSANDAR KOSTOV E-mail: KOSTOV@CS.UALBERTA.CA * * Division of Neuroscience AKOSTOV@GPU.SRV.UALBERTA.CA * * University of Alberta phone: (403) 492-5091 * * 513 Heritage Medical Research Ctre. fax: (403) 492-1617 * * EDMONTON, AB, T6G 2S2, CANADA * **************************************************************************** (10) ===== NINDS ========== Date : Sat, 22 Oct 1994 00:22:54 -0400 Sender : Parkinson's Disease - Information Exchange Network : >From : Larry Fiebert Subject: RECORDS SELECTED FROM NATIONAL LIBRARY OF MEDICINE (fwd) While exploring the internet I came accross the following which may be helpful to some subscribers. I hope this info from the National Library of Medicine is helpful. Larry Fiebert lfiebert@Unix1.netaxs.com ---------- NAME National Institute of Neurological Disorders and Stroke (NINDS) ADDRESS 9000 Rockville Pike Building #31, Room 8A-06 Bethesda, MD 20892 INSTITUTION CONTACTS Head TELEPHONE NUMBER(S) (301) 496-5924 Voice (800) 352-9424 Voice LAST REVISION DATE Feb 9, 1993 DESCRIPTION The NINDS, originally established in 1950 as the National Institute of Neurological Diseases and Blindness and in 1975 as the National Institute of Neurological and Communicative Disorders and Stroke, became the National Institute of Neurological Disorders and Stroke in 1988. The NINDS conducts and supports research and research training on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke. The Institute awards grants for research projects, program projects, and center grants; provides training support to institutions and fellowships to individuals in the fields of neurological disorders and stroke; conducts intramural and collaborative research; and collects and disseminates research information. Requests for information should be directed to the NINDS Office of Scientific and Health Reports. MATERIALS AVAILABLE Consumer publications are available on amyotrophic lateral sclerosis, aphasia, autism, cerebral palsy, dementias, epilepsy, Friedrich's ataxia, Huntington's disease, multiple sclerosis, muscular dystrophy, myasthenia gravis, neurofibromatosis, Parkinson's disease, shingles, spina bifida, spinal cord injury, torsion dystonia, stroke, head injury, Gaucher's disease, Niemann-Pick disease, Fabry's disease, Tay-Sachs disease, Farber's disease, metachromatic leukodystrophy, and lipid storage diseases. Materials for professionals cover neurological disorders, stroke, epilepsy, research and training programs, Alzheimer's disease, and spinal cord injuries. SUBJECTS *Cerebrovascular Disorders Clinical Protocols *Communicative Disorders Information Services National Institutes of Health (U.S.) *Nervous System Diseases *Neurologic Manifestations Research Support OTHER TERMS ALZHEIMER'S DISEASE CEREBRAL PALSY DEMYELINATING DISEASES EPILEPSY FUNDING SOURCES INJURIES MENTAL HANDICAPS NERVOUS SYSTEM DISEASES NEUROMUSCULAR DISEASES RESEARCH SPINAL CORD INJURIES STROKE TRAINING PROGRAMS NLM UNIQUE IDENTIFIER HR/0046 === end of als 137 ===