=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#85, 22 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 .. ALS & Pain 2 .. CD available 3 .. NMIN Conference 4 .. ALS BBS 5 .. ALS & neurotoxins (more) 6 .. noninvasive drug delivery to brain (1) ===== ALS & Pain ========== Date : 15-Feb-94 17:22 EST >From: MARTIN I. WEINBERGER <72724.324@compuserve.co> Subj : Pain In response to two recent inquiries on pain and ALS: My wife was diagnosed a little over two years ago at age 65. Onset was legs followed quickly by arms. Early on she complained about neck and shoulder pain which was relieved at first by massage with and without Bengue-type rubs. Then hot packs seemed to bring relief. MDS clinic suggested physical therapy which helped not at all. As pain grew more severe, MDS clinic referred her to the Pain Clinic at our University Hosp. After some testing they suggested a morphine-type medication which my wife rejected out-of-hand (for fear of addiction). She is presently on Elavil - 75mg at night to help fall asleep. Surprisingly, the level of pain has reduced of its own accord and she has not complained of this particular problem for some time. MDS physicians looked upon the problem as unique and had no substantitive advice. (2) ===== CD available ========== Date : Tue, 1 Feb 1994 17:00:16 EST Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3394 ------------------------------------------------------------- To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send electronic mail to Bill McGarry at any of the following addresses: ------------------------------------------------------------- UUCP: uunet!bunker!wtm INTERNET: wtm@bunker.afd.olivetti.com BITNET: l-hcap@ndsuvm1.bitnet Fidonet: The Handicap News BBS (141/420) 1-203-926-6168 (300 - 14,400 baud, 24 hours) National VideoText Network (NVN): BillSysop Compuserve: 73170,1064 Bill McGarry (Moderator) (203) 926-6187 ------------------------------------------------------------- ------ Subject: CD Available >From : klford@facstaff.wisc.edu (Kelly Ford) The Trace R&D Center has just released the 6th edition of our Co-Net CD. For more info you can call (608) 262-6966 (voice) or (608) 263-5408 (TDD) or write the internet address of info@trace.waisman.wisc.edu Here';s a list of some of what you'll find on the disk. On the Co-Net 6 CD, you will find a wide variety of information. . . ABLEDATA Hyper-ABLEDATA for Macintosh; DOS-ABLEDATA for IBM ABLEDATA is a database of over 18,000 rehabilitation and assistive devices. It is maintained by Macro International, under contract with the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Dept. of Education. Abledata provides product descriptions and company information for all products. Two versions of ABLEDATA are provided on Co-Net 6: Hyper-ABLEDATA for the Macintosh and DOS-ABLEDATA for IBMs and compatibles. Both are completely accessible to individuals who are blind: Hyper-ABLEDATA includes a voice output mode for blind users; DOS-ABLEDATA is specially designed to work with commercially available screen readers. Cooperative Service Directories (CSDs) Available in the preview of the Electronic Library (for first-time users), and as separate directories for those who are already using the CSD software at their sites. CSDs are resource directories listing people and agencies that provide disability-related services. The directories have all been created in a common format to facilitate the sharing of information between the people maintaining the directories. To facilitate use by a wide range of users, these directories are very easy to use. They also have a number of special features, including one that allows you to search for all of the programs that meet your (or a clientUs) need, and then have those programs listed in order by their distance from your client. The directory will also plot the locations of those programs on a map to see how they are distributed throughout your state or region of the country. On this CD, you will find a sampling of some of the directories being developed. On the next CD, you will see an even larger number of directories. Included on this CD are: % Directory of Disability-Related Bulletin Boards % Montana Directory of Disability-Related Services (Tech Act Project) % Directory of Protection & Advocacy Agencies % Directory of Resources for Older People % RehabTech Directory of ADA Information % National Disability-Related I&R Services Directory % Alaska - ATA Directory (Tech Act Project) % Nevada Directory (Tech Act Project) % Directory of Independent Living Programs (from ILRU) % Northeast DBTAC Directory of ADA Information % Directory of NIDRR Technology-Related Projects Sneak Peek at Publications, Media, and Materials (PMM) In the ROtherS subdirectory on the Co-Net 6 CD. Also on the Co-Net 6 CD youUll find a sneak preview of a new type of database were working on, which covers publications, media, and materials. This Publications, Media, and Materials (PMM) database lists informational and educational resources for rehabilitation and assistive technology. The PMM software is based on the industry standard ProCite bibliographic data format. As a result, if any database is maintained in ProCiteQor EndNote or any other format that can be translated into ProCiteQit can easily be made into PMM databases for distribution to colleagues. (Using existing software, you can do a search of databases over InterNet and dump the results into a ProCite database format.) Even databases which are not been maintained in ProCite format can be translated into PMM directories On the CD we have put the entire RehabData database into this form for you to access. Advance peek at new access strategies under development for graphic information systems. In addition to a flexible and easy-to-use interface, the sneak peek at the new PMM databases will also show you some of the new access techniques we are looking at and will be incorporating in all of our databases. The PMM software provides an advance peek at new access strategies under development for graphic information systems, including voice-output access for blind users and a built-in large print mode which supports type up to 72 points in size, plus accommodations for slower typers, individuals who cannot use a mouse and must use the keyboard only, and individuals who would not hear any auditory feedback. On the Co-Net 6 CD, you will find the following databases which demonstrate this new software: RehabData: This database contains the RehabData entries for the year 1993 only. This 187-record database was received from NARIC in late October, 1993. (This database is available in PMM Peek1 subdirectory or PMM Peek2 subdirectory on the CD.) ProCite sample database: This is a 30-record sample database that is included with ProCite when you buy it. It gives examples of the different types of entries handled by ProCite. This database was translated in 12 seconds by a utility program which will be available on the next CD (Co-NetJ7). (Available in PMM Peek1 subdirectory or PMM Peek2 subdirectory on the CD.) Full RehabData database: This is a copy of the full RehabData database as sent to us by NARIC in late October 1993. The database contains over 30,000 entries and a wealth of information on disability-related information publications and reports, many of which are not available through any other method. (Available in PMM Peek2 subdirectory only.) Text Document Library This is a collection of key disability-related documents regarding law, ADA, accessibility, and funding. These documents are included in their entirety. Whenever possible, the documents include text descriptions of any graphics that appeared in the original document. The availability of these text descriptions, however, will vary depending on the original source of the documents. Documents on this CD include: Funding % Financing Assistive Technology: A Handbook for Rehabilitation Professionals. Access % Accessible Design of Consumer Products, Working Draft 1.7 % Air Carrier Policies on Transport of Battery Powered Wheelchairs % Assistive Listening Systems % Checklists for Implementing Accessibility in Computer Laboratories at Colleges and Universities, Version 1.0 % Checklists for Making Library Automation Accessible to Disabled Patrons % Considerations in the Design of Computers to Increase Their Accessibility by Persons with Disabilities, Version 4.2 % Full Visual Annotation of Auditorially Presented Information for Users who are Deaf: ShowSounds % Guidelines for Aircraft Boarding Chairs % Lifts and Wheelchair Securement for Buses and Paratransit Vehicles % Making Software More Accessible for People with Disabilities: A White Paper on the Design of Software Application Programs to Increase Their Accessibility for People with Disabilities % Project EASIUs Adaptive Computing Evaluation Kit for Colleges and Universities % Putting Information Technology to Work for Persons with a Disability % Securement of Wheelchairs and Other Mobility Aids on Transit Vehicles % Technical Paper on Mobility Aids Stowage % Toward a Standardized Format for ASCII Text Documents % Transit Facility Design for Persons with Visual Impairments % Visual Alarms to Alert Persons with Hearing Loss ADA Information % The Americans with Disabilities ACT (ADA) % Americans with Disabilities (ADA) Handbook % Americans with Disabilities Act (ADA) Accessibility Guidelines for Buildings and Facilities % Americans with Disabilities Act Accessibility Guidelines for Buildings and Facilities, Figures and Tables % ADA Regulations % Americans with Disabilities Act Requirements Fact Sheet % ADA Questions and Answers % Americans with Disabilities Act in Brief % ADA Technical Assistance Manuals Laws % Rehabilitation Act of 1973 % Technology-related Assistance for Individuals with Disabilities Act of 1988 % The Americans with Disabilities ACT (ADA) % Voting Accessibility for the Elderly and Handicapped Act Other Information % Chronic Fatigue Syndrome Resource File for Patients % Stroke: A NARIC Resource Guide for Stroke Survivors and Their Families % Technology-Related Assistance for Persons with Disabilities Act: State Programs Available Across Platforms This is a dual-boot CD. You can boot this CD on either an IBM or a Macintosh computer. Currently: % ABLEDATA is available in DOS (DOS-ABLEDATA) or Macintosh (Hyper-ABLEDATA) form (with a Windows version on the way). % Cooperative Service Directories (CSD) are available in DOS, Windows 3.1, and Macintosh format. % Publications, Media and Materials (PMM) sneak preview databases, including RehabData, are available in Windows 3.1 and Macintosh format (with a DOS version on the way*). % Text Library is accessible from DOS, Windows, Macintosh, OS/2, and any other operating system that can access either a DOS or Macintosh CD with text files on it. (3) ===== NMIN Conference ========== Date : Mon, 7 Feb 1994 11:20:46 CST Sender : Medical Libraries Discussion List >From : "Robin Meter " Subject: NMIN Confernce FROM: Robin Meter - The 3rd annual National Medical Information Networking conference is scheduled for July 18-20, 1994, in Omaha, NE. This year's theme revolves around the "National Health Information Highway". The sponsor's of this year's conference are soliciting presentations of projects (local, regional, national in scope) that utilize emerging information technology to address the issues of providing health information/communication to appropriate health information user groups (providers, payors, utiliz. review, etc). Informal papers/presentation suggestions for this year's conference can be sent to: Robin K. Meter NMIN Conference Chair Univ. of Nebraska Medical Center 600 S. 42nd Street Omaha, NE 68198-5030 voice - 402-559-5759 fax - 402-559-5759 Internet: rmeter@unmc.edu (4) ===== ALS BBS ========== Date: Sat, 12 Feb 94 15:25:58 EST From: "Doug Jacobson" This is to announce the opening of a new FirstClass bulletin board in Houston, Texas called The Fringe (713-996-6866). Currently, The Fringe offers Giga-ROM Version 4.0, with over 1,700 MB of files (compressed, of course, to fit on a single CD), plus the latest offerings from Sumex and UMich. In addition, there are areas of discussion for just about everything, plus a special conference for folks afflicted with any of the various autoimmune disorders (MS, ALS, PLS, etc.). Mention that you would like access to this conference, and send me the address of the ALS Digest (als@huey.met.fsu.edu), and you'll be given access to this area and your subscription rate will be cut in half (normally $20 per year to cover operating expenses, you'll get it for $10). I want to make this a support forum that will offer help to anyone with a computer and a modem, as well as a repository for the text of research articles, news on the diseases, etc. FirstClass is a graphical user interface bulletin board system that runs on a Macintosh. However, there are clients for both the Mac and Windows, as well as a command line interface that will work with any communications software (for best results, use VT100 terminal emulation). The clients are available for download on the board. Currently, there is one 14400 v.32bis modem on one of the two lines installed for The Fringe. They roll to each other, so if the line just rings, try back later. This problem will be solved when my two modems arrive in a week or two. Then there will be two lines, 14400 each. Doug Jacobson, the system administrator, was diagnosed with motor neuron disease in June of 1991. A month ago, he got tired of not being proactive, and wanted to do something to help. He is currently in month seven of an 18-month riluzole trial, and will be posting updates monthly. If you have questions, call The Fringe and leave mail for Doug. Again...The Fringe...(713) 996-6866 (5) ===== ALS & neurotoxins (more) ========== =========================================================== Title : Use of neurite outgrowth as an in vitro method of : assessing neurotoxicity. Author : Abdulla EM;Campbell IC Source : Annals of the New York Academy of Sciences : 1993 May 28;679( ):276-9 =========================================================== Title : Facilitated transport of the neurotoxin, : beta-N-methylamino-L-alanine, across the : blood-brain barrier. Author : Smith QR; Nagura H; Takada Y; Duncan MW Source : Journal of Neurochemistry : 1992 Apr;58(4):1330-7 =========================================================== Title : Discovery and partial characterization of primate : motor-system toxins. Author : Spencer PS; Hugon J; Ludolph A; Nunn PB; Ross SM; : Roy DN; Schaumburg HH Source : Ciba Foundation Symposium : 1987;126( ):221-38 =========================================================== Title : Bicarbonate dependence of glutamate receptor : activation by beta-N-methylamino-L-alanine: channel : recording and study with related compounds. Author : Weiss JH; Christine CW; Choi DW Source : Neuron 1989 Sep;3(3):321-6 =========================================================== Title : Current theories on the cause of Parkinson's disease. Author : Langston JW Source : Journal of Neurology, Neurosurgery and Psychiatry : 1989 Jun;Suppl( ):13-7 =========================================================== Title : Theories of neurodegeneration. Author : Calne DB; Hochberg FH; Snow BJ; Nygaard T Source : Annals of the New York Academy of Sciences : 1992 May 11;648( ):1-5 =========================================================== (6) ===== noninvasive drug delivery to brain ========== Date : Sun, 20 Feb 1994 08:21:21 -0600 Sender : Neuroscience Information Forum : >From : William H Frey-1 Subject: NONINVASIVE DRUG DELIVERY TO BRAIN FOR NGF & OTHER AGENTS I have developed a noninvasive intranasal method for delivering therapeutic and diagnostic agents to the brain via the olfactory pathway. This method is especially useful for agents such as NGF which do not cross the blood-brain barrier. I am looking for an industrial sponsor or other source of funding for this research. If you have an interest in this research, please respond by E-mail or call Dr. Frey at 612-221-2743 at the Ramsey Alzheimer's Treatment and Research Center, 640 Jackson St., St. Paul, MN 55101 (USA). == end of als 85 ==