=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#83, 15 February 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 == == 200+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == == == All interested people may "broadcast" messages to == == ALS Digest subscribers by sending to: == == als@huey.met.fsu.edu == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Profile/ALS 2 .. ALS/sensitive switches 3 .. plans for ALS/PD gopher in Guam 4 .. Recordings for the Blind 5 .. recent citations about ALS 6 .. ALS Patient Profile Project 7 .. N-methyl-3-nicotinic acid 8 .. HMatrix-L (online health resources) (1) ===== Profile/ALS ========== Date : 15 Feb 94 12:25:43 EST >From : RON LEEB <72613.2113@CompuServe.COM> Subject: Profile/ALS I was diagnosed with ALS 15 years ago when I was 22 years of age. That Holloween diagnoses of three years to live slapped the youth out of me. Six years later and not dead yet, but tired of falling on my face, I received an electric wheelchair from MDA and went back to my local community college here in the ~~shakey~~ San Fernando Valley, Los Angeles, California. I earned an Associate of Arts degree from Pierce College and am now an honors student at Cal. State University, Northridge (where the campus was heavly dameged during the ~~earthquake~~), having only two more semesters to go to earn a BA degree. Then I'm off to law school, hopefuly UCLA, if they will have me. Going back to school has kept me alive! It was the challenge I needed to keep living; though not everybody can understand me when I speak, not one person has been cruel. It has also allowed me to set and exceed goals. I strongly recommend to all those newly diagnosed with ALS to do as I did and go back to school, it will keep the demons away! With the law degree I will sue the federal government to get the answers about the placement of a powerful neurotoxin and allelopath into some mixed fertilizers, which I strongly believe will one day be proven to be the cause of ALS, but nonetheless, remains a public health danger. As long as my physical condition holds up (my upper & lower body has weakened at about the same rate over these 15 years, so I figure when it's time to go on a vent there will be no need, as my body will be totaly warn out), I will fight this demon within me to my last breath! --Ronn-- === = Editorial Note: An earlier issue of the ALS Digest (Issue 61) = consists of Ronn's theory about the cause of ALS. === (2) ===== ALS/sensitive switches ========== Date : 10 Feb 94 15:38:39 EST >From : Charles M Ward <72567.400@CompuServe.COM> Subject: Re: ALS/sensitive switches I have experimented with most of the switches on the market. Tash, ACS etc. What I find is that most of them take far too much effort. However Zygo in Portland has an excellent selection of high quality, extremely low effort switches. They have a cataloge of just switches available. I find that the mounting system is as important as the switch. Zygo sells excellent mounts but I have found the Able-Net arm to be the most adaptable and rigid system. Remember also that Words+ has an eye blink switch that works very well. Zygo is at PO box 1008, Portland, OR, 97207-1008, (503) 684-6006. AbleNet universal switch mounting system, Able-Net Inc, 360 Hoover St NE, Minneapolis MN, 55413, 1-800-322-0956 or (612) 379-0956. I have found the Able-Net arms to be very versitile and strong. For years I used it to suspend a quart of my drink so I could sip it through a straw. It has a clamp and universal adjustment feature that has to be seen to appreciate it. I use these arms to support my respirator tubing also. Zygo makes a variety of ALS useful devices including a page turner that will handle anything. Their total cataloge is well worth looking at. I hope this helps. Mike Ward (3) ===== plans for ALS/PD Gopher ========== >Date : Thu, 03 Feb 1994 10:52:20 >Subject: ALS/PD Gopher >From : dhanson@osteon.win.net (Douglas B. Hanson) > >I am working on a project with the Micronesian Health Archives >associated with the School of Nursing and Allied Health at the >University of Guam. The University of Guam will have an Internet >node up and running within the next few months. One of the things >we would like to do once it is up and running is to set up a >gopher pointing to the archived contents of your distribution list. >Is the list currently being archived somewhere and if so how do we >gain access to it. As you know, Guam is one of the high-incidence >foci of the sporadic form of ALS and PD. As a service to the >health care community on the island of Guam, the Micronesian Health >Archives would like to provide gopher access to your archived >list. If it is not currently being archived perhaps we could set >one up at UOG. My best regards to you during the coming year. Doug. > >Douglas B. Hanson, Ph.D. >Bioengineering Department >Forsyth Dental Center >140 Fenway >Boston, MA 02115 >dhanson@osteon.win.net > Back issues are available via anonymous FTP at mailer.fsu.edu, on directory /ftp/pub/als. Also available via gopher at gopher.fsu.edu, using als as the search term. Good luck to you with the U of Guam effort. rgds,bro (4) ===== Recordings for the Blind ========== Listname: "Muscular Dystrophy - Patients, Family, & Friends" : Date : Fri, 04 Feb 1994 00:52:34 -0700 >From : "Ray Harwood -- Data Basix: (602)721-1988" : Subject : RFB Electronic Literature Several weeks ago, Mr. Anne Zeilstra mentioned that he had obtained information from the organization called Recordings for the Blind, or RFB, about their ability to provide electronic copies of books to ANYONE who might have a difficult time physically reading printed editions. Anne graciously obtained RFB's permission to provide their information files electronically here on the Internet. To obtain the files (13 of them!), send an EMail message addressed to: MD-Files@Data.Basix.COM with the following 1-line message body: SEND RFB Shortly (same day, maybe within a few minutes depending on how many messages Data.Basix.COM is processing) you will receive the files listed here: Filename from the Filename on RFB Description of MD-List File Server Distribution Disk File ------------------- ----------------- --------------------------------- RFB.01-README README.TXT READ THIS FILE FIRST RFB.02-CONTENTS CONTENTS.DOC TABLE OF CONTENTS OF THESE FILES RFB.03-ETCAT ETCAT.DOC E-TEXT CATALOG LISTING RFB.04-MERGER MERGER.DOC QUESTION AND ANSWER RFB/CBFB MERGER RFB.05-NEWBOOKS NEWBOOKS.DOC NEW BOOKS ADDED TO E-TEXT LIBRARY RFB.06-RFBGUIDE RFBGUIDE.DOC A GUIDE TO USING RFB'S SERVICES RFB.07-APPL APPL.FRM INDIVIDUAL APPLICATION SERVICE FORM RFB.08-BKORDER BKORDER.FRM ORDER FORM FOR RECORDED BOOKS RFB.09-CAT CAT.FRM RECORDED BOOKS CATALOG FORM RFB.10-ETORDER ETORDER.FRM ORDER FORM FOR E-TEXT BOOKS RFB.11-PLAYER PLAYER.FRM TAPE PLAYER ORDER FORM RFB.12-QRCQDC QRC.FRM QRC ORDER FORM RFB.13-REGIS REGIS.FRM INSTITUTIONAL REGISTRATION FORM While their services are not FREE, they certainly are very reasonably priced in my opinion. I'm sure we on the MD-List would like to hear of anyone's experience with RFB and their services! Ray ----- Ray Harwood | Data Basix | Adjunct Faculty, East Campus, Voice: (602)721-1988 | PO Box 18324 | Pima Community College FAX: (602)721-7240 | Tucson, AZ 85731 | Instructor in Ada and Pascal rharwood@Data.Basix.COM | Info@Data.Basix.COM | rharwood@east.pima.edu (5) ===== recent citations about ALS ========== =============================================== Title : Survival in amyotrophic lateral sclerosis: The role : of psychological factors Author : McDonald E.R.; Wiedenfeld S.A.; Hillel A.; : Carpenter C.L.; Walter R.A.; Source : 1994 51/1 (17-23) ARNEA Archives of Neurology Abstract : Objective: Examining the relationship between : psychological status and survival in amyotrophic : lateral sclerosis. Our hypothesis is that : psychological distress is associated with greater : mortality and shorter survival time than : psychological well-being. Design: Cross-sectional, : longitudinal. The baseline evaluations used were : disease severity and 10 psychometric tests. A : psychological status score was derived from these : tests. Survival status was monitored for 3.5 years. : Interviewers were blinded to other interviews and : data analysis. Setting: Patient's residence. : Patients: The criteria for eligibility were diagnosis : of amyotrophic lateral sclerosis by a neurologist, : dementia or alcoholism absent, communication in English, : and any severity or length of disease. It was a : volunteer sample consisting of 144 patients from : amyotrophic lateral sclerosis clinics or community- : based amyotrophic lateral sclerosis support groups. : In this sample 66% were men, 94% were white, mean : age at diagnosis was 55 years, 79% were married, : 60% had some college education, and 61% died during : the study. Interventions: None. Main Outcome Measures: : End points: mortality during study, survival time : from intake to last follow-up. Results: Comparison : between high and low psychological score groups: 32% : of high and 82% of low died; survival curves were : significantly different. Controlling for confounding : factors (length of illness, disease severity, age), : patients with psychological distress had a greater : risk of mortality (relative risk, 6.76; 95% confidence : limits, 1.69 to 27.12) and greater likelihood of : dying in any given time period (relative risk, 2.24; : 95% confidence limits, 1.08 to 4.64) than those with : psychological well-being. Conclusion: Adjusting for : confounding factors, psychological status is strongly : related to outcome in amyotrophic lateral sclerosis. : Further studies on psychological status should be : done to confirm its prognostic value. =============================================== Title : Proportional mortality analysis of wastewater treatment : system workers by birthplace with comments on amyotrophic : lateral sclerosis Author : Betemps E.J.; Buncher C.R.; Clark C.S.; Source : 1994 36/1 (31-35) JOCMA Journal of Occupational Medicine Abstract : There is concern that wastewater treatment system : workers are at risk for cancers and diseases affecting : the neurological and digestive systems. However, these : diseases have also been linked to early exposures. A : proportional mortality study was conducted on a large : cohort of wastewater treatment system workers who were : divided into two groups, migrants and nonmigrants, by : place of birth as reported on their death certificates. : The migrant worker group was significantly higher than : the US white male population for cancer of the stomach, : leukemia, and all lymphopoietic cancers. Migrant workers : also had an elevated ratio for all diseases of the : nervous system and sense organs. No cases of amyotrophic : lateral sclerosis were found. The American-born workers : had an elevated rate of death for arteriosclerotic : heart disease compared with the US white male population. : We suggest that place of birth may present a confounding : factor when evaluating exposures in employee groups. =============================================== Title : Guam ALS-PDC: Possible causes [1] Author : Spencer P.S.; Kisby G.E.; Ross S.M.; Roy D.N.; Hugon J.; : Ludolph A.C.; Nunn P.B.; Hudson A.J.; Sacks O.W.; Source : 1993 262/5135 (825-826) SCIEA Science =============================================== (6) ===== ALS Patient Profile Project ========== Please notice the first reference of the preceeding note. One of the authors is Evelyn R. McDonald. She heads up the ALS Patient Profile Project. For more information send a self-addresses stamped envelope (with 52 cents worth of stamps) to: Evelyn R. McDonald ALS Patient Profile Project The New Road Foundation P.O. Box 15981 Seattle WA 98115 (7) ===== N-methyl-3-nicotinic acid ========== Date : Mon, 7 Feb 1994 13:27:47 +1100 Comment: Australian National Clearing House on Drug Development Origin : anchodd@cc.utas.edu.au >From : Mark Player To : Multiple recipients of list Subject: N-methyl-3-nicotinic acid Dear Netters I am looking for a reference on the toxicity of N-methyl-3-nicotinic acid. I have not been successful with the usual sources. As you know this is the metabolite of Bodor's so called Drug Delivery System, designed to deliver a prodrug across the blood-brain barrier. Although I have heard it mentioned that there may be toxicity I cannot find this mentioned in the literature. I have also heard that the prodrugs are "bricks" and must be brought up in DMSO. If anyone has references (personal experiences are O.K. too) I would be greatful to hear of them. Please respond to me... Mark R. Player T490064@univscvm.csd.scarolina.edu U.S.C. - College of Pharmacy Columbia, SC 29202 USA (8) ===== HMatrix-L (online health resources) ========== Date : Wed, 9 Feb 1994 13:04:16 CST Sender : Medical Libraries Discussion List >From : Lee Hancock Subject: Announcing HMatrix-l ---------------------------------------------------------------------- ANNOUNCING HMATRIX-L - A discussion of online health resources. HMatrix-L is an Internet discussion list concerning online health resources. The primary focus is on Internet/BitNet/UseNet health resources. But any electronically accessable service of interest to those involved in health/medical activities, i.e. academic, clinical, research, medical librarians, patients, and interested lay persons, is open for discussion. The intent is to share and document the location, access directions and quality of information found online. A further purpose is to increase the sharing of resources (i.e. information, search techniques, images, multimedia files, tutorials, etc.) among the health community. To Subscribe to HMatrix-L send an email message to LISTSERV@UKANAIX.CC.UKANS.EDU with the first line: SUBSCRIBE HMATRIX-L YOUR_NAME To unsubscribe send an email message to LISTSERV@UKANAIX.CC.UKANS.EDU with the first line UNSUBSCRIBE HMATRIX-L Owner: Lee Hancock (le07144@ukanvm or le07144@ukanvm.cc.ukans.edu) University of Kansas Medical Center ======================================================================== Lee Hancock || Archie R. Dykes Library Educational Technologist || 3901 Rainbow Blvd. University of Kansas Medical Center || Kansas City, KS 66160-7181 || (913) 588-7144 Bitnet - LE07144@UKANVM || Internet - LE07144@UKANVM.CC.UKANS.EDU || "Knowledge is nothing if not || shared"... Me Owner & Editor: Internet/BitNet Health Science Resources List Owner CPRI-L (Listserv@ukanaix.cc.ukans.edu) Computerized Patient Records HMATRIX-L (Listserv@ukanaix.cc.ukans.edu) Online Health Resources ========================================================================== == end of als 83 ==