=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#88, 11 March 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 == == 220+ 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, it is *not* a LISTSERV setup. == == == == All interested people may "broadcast" messages to == == ALS Digest subscribers by sending to: == == als@huey.met.fsu.edu == == == == The ALS Digest is not a peer reviewed journal and it is == == not edited by an MD. It comes out (usually) weekly. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== CONTENTS OF THIS ISSUE: 1 .. ALS/medicaid/states 2 .. Re: Parkinson's/rural living 3 .. document delivery (medical articles) 4 .. more current citations re ALS 5 .. ALS and vision 6 .. ALS 7 .. New tool to test neurological disease therapies (1) ===== ALS/medicaid/states ========== >From: ianp@carina.unm.edu (ian FRIENDS.IN.TIME phillips) Date: Mon, 7 Mar 1994 14:43:18 -0700 (MST) By the way readers maybe interested to know that many states have excellent medicaid aid while others offer little. Since insurance usually doesn't cover much, moving may be the option for some. I don't know which states are best but Washington, Colorado, and Oregon are good. For example, Washington will cover 16 hours a day of in home care if you on a vent. Sincerely Ian Phillips (2) ===== Re: Parkinson's/rural living ========== Date: Thu, 10 Mar 1994 08:55:01 -0500 (EST) >From: NeuroScience Center at TMH Subject: Re: Parkinson's/rural living The American Parkinson's Diseases Association does not have an e-mail address. They do operate a bulletin board, however: (805) 934-4950 For details on use of the BBS call (805) 934-2216 Maybe if we call and nag them enough they'll get with the program and clue in to Internet. They're regular number is 1-800-223-2732 Chris Sands The NeuroScience Center neuro@freenet.scri.fsu.edu at Tallahassee Memorial (904) 681-5037 On 5 Mar 1994, RON LEEB wrote: > Has anyone read about the rural living link to Parkinson's disease? Can > you give me that reference, or the e-mail address of the Parkinson's > Foundation. --Thanks-->Ronn<---- > (3) ===== document delivery (medical articles) ========== //// PART A -- the question Date : Mon, 7 Mar 1994 12:10:15 EST Sender : Medical Libraries Discussion List >From : Bob Broedel Subject: seeking copy service Dear Friends, I am trying to locate a medical library that is set up to handle outside requests for photo copies of articles from medical journals. Ideally a person would be able to e-mail them specifics about the article. The library would then respond by mailing or FAXing the article for a flat-rate fee per article ... with the library handling problems related to copyrights, etc. Even if a pre-payment via regular mail were required, it would be a wonderful service, especially for those of us who do not have access to a library that is well-stocked with medical journals. For instance, I am trying to locate a copy of the following journal article: ---------- TITLE : Case Report: the development of a feeding harness for an : ALS patient AUTHOR: Takai, V.L. SOURCE: AM J OCCUP THER 1986 May; 40(5): 359-61 (5 bib) ---------- I cannot find this article in any of the libraries here in Tallahassee. If a service exists that can handle such requests I would like to know about them ... and would like to tell others of the ALS Interest Group about it. It would be great to be able to upload an informative text file about such a service to that Group. Looking forward to hearing from all who can help with this request. Sincerely, bro ======================= ========================== Bob Broedel, Engineer = Strike Out ALS ! = Meteorology Department = (Lou Gehrig's Disease) = FLORIDA STATE UNIVERSITY = List Owner: = Tallahassee, Florida 32306-3034 USA = ALS INTEREST GROUP = ================================================================ TEL: 904-644-6840 (work, answering machine), 904-576-4906 (home) FAX: 904-644-9642 ATTN:BROEDEL E-mail: bro@huey.met.fsu.edu TELEX (AT&T EasyLink): 5106014520 (TALLY-KRAS FL) ================================================================ //// PART B -- an answer >From : "Vicki L Glasgow-1" Date : Mon, 7 Mar 94 16:26:53 CST Subject: Biomedical Information Service I think our service is just what you are looking for! The Biomedical Information Service is a fee-based service of the Bio-Medical Library of the University of Minnesota. We have been in existence for the past 11 years with a primary objective of providing access to the services and collections of our Library for outside users. We currently serve over 3 thousand clients, including medical technology companies, health care organizations, law firms, and individuals. The Bio-Medical Library has one of the most complete collections of biomedical literature in the U.S., with more than 400,000 volumes and many complete runs of biomedical journals going back to the 19th century. We pride ourselves on providing medical research, online searching, and document delivery services with fast turnaround time at a reasonable cost. You can access us by mail, phone, fax, or e-mail. We are almost ready to announce our new Gopher service via the Internet--just a few more rewrites of our askblocs and we'll be up and running. In the meantime, you may wish to e-mail me through the Internet at : blibvlg@maroon.tc.umn.edu. Please note that we also have a toll-free number : (800) 477-6689. We are hoping to be able to offer a toll-free fax number in the near future. In the meantime, if you need an article on a rush or superrush basis, you may want to fax us at (612) 626-3824 (flat rate of $6.00 per article, plus rush fees as applicable) or call us on our toll-free number (flat rate of $ 8.00 per article, plus rush fees as applicable). Our standard turnaround time is 2-3 working days. Rush service can be provided within one working day ($5.00 surcharge per article); SuperRush service can be provided the same day ($10.00 surcharge per article). Please see the brochure I faxed to you for more information. We currently operate on either a cash or bill at end of month basis. I'd be happy to answer any questions you may have regarding our service. I look forward to assisting you with your information needs in the near future. Vicki Glasgow Biomedical Information Service Vicki Glasgow Internet: blibvlg@staff.tc.umn.edu BIO-MEDICAL LIBRARY PROFS: v-glas@vm1.spcs.umn.edu Biomedical Information Service (612) 626-3730 University of Minnesota (4) ===== more current citations re ALS ========== =============================================== Title : Adrenal size is increased in multiple sclerosis Author : Reder A.T.; Makowiec R.L.; Lowy M.T.; Source : 1994 51/2 (151-154) ARNEA Archives of Neurology Abstract : Objective: To determine if adrenal glands are enlarged : in multiple sclerosis (MS). Patients with MS and major : depression are insensitive to glucocorticoid feedback : regulation. Depressed patients have excessively high : glucocorticoid levels and enlarged adrenal glands. : To our knowledge, this is the first study of adrenal : size in MS. Chronic high levels of adrenal glucocorticoid : in MS may downregulate responses to exogenous or : endogenous steroids. Design: Retrospective postmortem : analysis compared adrenal size in MS with that in : other neurologic and non-neurologic diseases. Setting: : Autopsy cases were obtained from the records of a : tertiary care hospital. Patients: Ten patients had : definite MS; 13, amyotrophic lateral sclerosis; and 14, : acute myocardial infarction. Main Outcome Measures: : Adrenal and body weight at autopsy. Results: At postmortem : examination, the adrenal glands of patients with MS : were enlarged in comparison with the adrenal glands of : patients who died of acute myocardial infarction or : amyotrophic lateral sclerosis. The adrenal glands of : the patients with MS were 36% larger than those of : the patients with amyotrophic lateral sclerosis who had : comparable body weights. The adrenal-body weight ratio : was 40% greater in patients with MS than in patients : who died of acute myocardial infarction. Conclusions: : The increased adrenal size in patients with MS may : allow excessive glucocorticoid secretion in response : to stress and affect immune regulation. =============================================== Title : Immunosuppressive treatment of motor neuron syndromes: : Attempts to distinguish a treatable disorder Author : Tan E.; Lynn D.J.; Amato A.A.; Kissel J.T.; Rammohan K.W.; : Sahenk Z.; Warmolts J.R.; Jackson C.E.; Barohn R.J.; : Mendell J.R.; Source : 1994 51/2 (194-200) ARNEA Archives of Neurology Abstract : Objective: To determine if response to immunosuppressive : treatment in motor neuron syndromes could be predicted : on the basis of clinical features, anti-GM1 antibodies, : or conduction block. Design: Prospective, uncontrolled, : treatment trial using prednisone for 4 months followed : by intravenous cyclophosphamide (3g/m2) continued orally : for 6 months. Setting: All patients were referred to : university hospital medical centers. Patients: Sixty-five : patients with motor neuron syndromes were treated with : prednisone; 11 patients had elevated GM1 antibody titers, : and 11 patients had conduction block. Forty-five patients : received cyclophosphamide, eight of whom had elevated GM1 : antibodies and 10 had conduction block. Results: One : patient responded to prednisone, and five patients : responded to cyclophosphamide treatment. Only patients : with a lower motor neuron syndrome and conduction block : improved with either treatment. Response to treatment : did not correlate with GM1 antibodies. Conclusions: GM1 : antibodies did not serve as a marker for improvement in : patients with motor neuron syndrome treated with : immunosuppressive drugs. Patients with amyotrophic : lateral sclerosis failed to improve irrespective of : laboratory findings. =============================================== (5) ===== ALS and vision ========== Date : Mon, 07 Mar 94 20:41:07 BS3 >From : RLINDEN%BRLNCC.BITNET@VTBIT.CC.VT.EDU Subject: ALS and vision Does anyone know of any evidence of visual impairement in ALS patients? I am particularly interested in the involvement of retinal ganglion cells, the long projection neurons that connect the retina to the brain. Any info welcome, thanks. Rafael _____________ Rafael Linden IBCCF-UFRJ E-mail: RLINDEN@BRLNCC.BITNET Phone: 55-21-290-6897 Fax: 55-21-280-8193 (6) ===== ALS ========== Date : Tue, 8 Mar 1994 01:52:25 EST Sender : Parkinson's Disease - Information Exchange Network : >From : Alan Bonander Subject: ALS I have had a request to find infromation on a drug that is being tested for ALS. The drug is called RILUZOLE and has been in test in the US for about 2 years. What I am looking for is a way for my friend to get this medicine for his wife. He is willing to travel to Europe if that is where it is available. Any help would be welcome. Regards, Alan Bonander (bonander@aol.com) (7) ===== New tool to test neurological disease therapies ========== UPn 03/09 2159 New tool to test neurological disease therapies By LIDIA WASOWICZ UPI Science Writer SAN FRANCISCO, March 9 (UPI) -- Researchers on Wednesday reported creating a unique strain of mice unable to produce a protein thought to nurture nerve growth, a feat that will provide an important tool for testing potential treatments for such neurodegenerative disorders as Lou Gehrig's Disease. "Our model will greatly advance the understanding of nerve cell development and serve well in evaluating potential therapies for human neurological diseases," said Dr. Rudolf Jaenisch of the Whitehead Institute for Biomedical Research and the Massachusetts Institute of Technology in Cambridge, Mass. The results are significant because they provide a new approach to unraveling a medical puzzle that has stymied scientists for decades -- how to regenerate nerve cells damaged by injury or disease. Previous efforts to gain insight into the complex interactions that promote nerve cell growth and survival -- focusing primarily on isolated nerve cells in culture -- have produced a mixed bag of limited and often conflicting results. The genetically engineered mice provide the first animal model completely lacking brain-derived neurotrophic factor, BDNF, one of four known substances thought to promote survival and growth of certain nerve populations. Previous studies have shown BDNF can prevent the death of certain neurons in culture and rescue motor neurons in newborn laboratory animals. The mice, with a specific mutation in the gene encoding BDNF, rarely survive to adulthood and exhibit a variety of neurological symptoms and physical defects in specific nerve groups, said Dr. Kuo-Fen Lee of Whitehead. "BDNF may prove useful in the treatment of neurodegenerative diseases, such as amyotrophic lateral sclerosis, commonly called Lou Gehrig's Disease," said Dr. Patrik Ernfors of Whitehead. "The mutant mice will provide an important tool for evaluating that possibility." "The ultimate goal is to understand how different neurotrophins interact during neural development to produce an intact embryo, and then learn to recreate those interactions to heal or rescue damaged nerve cells later in life," Jaenisch said. The study was funded by the National Institutes of Health. == end of als 88 ==