Date: Mon, 13 Feb 95 00:54:30 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD173 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#173, 12 February 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot'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 == == 480+ 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 .. Editorial -Thanks 2 .. ALS Digest back issues 3 .. ALS Resource 4 .. father diagnosed 5 .. Phoenix 6 .. Disabled friend seeking simple PC utility 7 .. support group meeting 8 .. Postdoctoral fellowship (1) ===== Editorial -Thanks ========== A BIG THANKS to Ed Brouwer (joecitizen@ccinet.ab.ca) for telling us about ALS Resources (3). bro (2) ===== ALS Digest back issues ========== Thanks to Stuart Neilson and his coworkers at Brunel University, back issues of the ALS Digest are available via the World Wide Web at URL: http://http1.brunal.ac.uk:8080/~hssrsdn/ and they are available via anonymous FTP at: src.brunel.as.uk , in the directory "cshsd/alsig/archive". (3) ===== ALS Resource ========== Date : Thu, 9 Feb 1995 17:16:17 -0700 >From : joecitizen@ccinet.ab.ca (Ed Brouwer) Subject: ALS Resource Having subscribed to the group for a week I would like to offer up the following www site as good place to find comprehensive information on ALS that includes the latest information on posiible causes and treatments. Information can be found at http://synapse.uah.ualberta.ca/ . Once at the site go to the Synapse Medical Library then to CME and look under Neuromuscular Disease. (4) ===== father diagnosed ========== Date : Thu, 9 Feb 95 14:54:16 EST >From : sbennett@UV1.IM.MED.UMICH.EDU (Scarlett Bennett) Subject: father diagnosed I joined the digest prior to my father's diagnosis, when he was told the worst case scenario of his medical diagnosis was that it may be ALS. He was diagnosed the week before christmas. Problem began with his hip joints, which was diagnosed as arthritis for which he was planning to have hip replacement surgery, but then developed foot drop in his left foot. After much testing and many neurology visits it was diagnosed as ALS. He has a brace on his left foot and lower calf to help him walk and feels that he will eventually be dependent on a wheelchair for his mobility. His major problem is he has severe pains in his leg especially the left leg and is on mega doses of a narcotic drug, Percoset, which he takes only before going to bed, as the pain is so severe he can't sleep. The medicine completely wipes him out, he wanted me to ask if any of you who subscribe to the digest could give him some ideas about what works for pain control as his physician has nothing more to suggest other than this narcotic. I have been sending him all of the copies of the digest since I joined and he has found it very helpful in dealing with with this disease. My e-mail address is sbennett@uv1.im.med.umich.edu. Thanks, Scarlett Bennett (5) ===== Phoenix ========== Source: The Milwaukee Journal 01/26/95 Title : Big Bend man's pen mightier than disease Byline: CYNTHIA DENNIS Big Bend His mischievous blue eyes still twinkle, and his friendly face is full of life. It is Jerry Weber's body that refuses to cooperate with his razor-sharp mind. "Obviously, he's very spunky," said Judee Weber, glancing fondly at her husband. Weber's physical abilities have gradually deteriorated from effects of Lou Gehrig's disease, which was diagnosed in 1984. Now the once-athletic Weber uses a wheelchair. His illness, which the family calls by its formal name, ALS, or amyotrophic lateral sclerosis, has garbled his speech. < parts deleted > But his mind is as energetic as ever. Evidence of that is clear in the newsletter he founded and named "Phoenix." < parts deleted > Painstakingly, with his left hand, he enters contents of the bimonthly publication into a word processor. His signature editorial is accompanied by items sent from about 425 recipients, or from excerpts elsewhere. Muskego friends Jean and Paul Stankevich arrange content into columns and print it. < parts deleted > From 1952 until his resignation in 1976, Weber was a Catholic priest. He subsequently married Judee and they have a daughter, Genevieve Kate. In 1984, a physician tolf the Webers that Jerry would be dead within a year. < parts deleted > The premiere issue of "Phoenix" explained his mission, in part, by saying: "Each person finds self-worth and fulfillment while assisting each other, becoming better humans in that process. Isn't that worthy?" The newsletter has a religious orientation and emphasizes hope and courage in essays, poetry and even jokes. Its original audience of less than 200 readers has grown to 425. The free publication, recently listed on the Prodigy on-line service, has brought inquiries from California, Florida and Iowa. It is supported by contributions. < parts deleted > ===== = Sorry, but the article did not give details about how one can get a = copy of the Phoenix. If anyone has such info, please spread the good = word. rgds,bro ===== (6) ===== Disabled friend seeking simple PC utility. ========== Date : Thu, 2 Feb 1995 09:16:41 EST Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3722 ===================================================================== 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: INTERNET: wtm@bunker.shel.isc-br.com < other sections deleted > >From : jtn@halcyon.com (James T. Newberry) Subject: Disabled friend seeking simple PC utility I've got a friend with slowly progressing ALS. Through the use of macros, he's able to do most of what he wants with the computer, but he's lost enough use of his hands that he can't really handle 2-key combinations... Is there a 286-compatible utility to make metakeys (Ctrl, Alt) sticky? I've heard that in newer Windows software, it is standard, but are there any old utilities around to help him? Also, is there some general place where I can look or point him for information about adaptive computing? I wasn't able to find a FAQ for this group... Thanks a bunch, Jim -- Jim Newberry: jtn@halcyon.com [Note from Bill McGarry: Here is the mail that I just sent to Jim: According to James T. Newberry: > > I've got a friend with slowly progressing ALS. Through the use of macros, > he's able to do most of what he wants with the computer, but he's lost > enough use of his hands that he can't really handle 2-key combinations... > Is there a 286-compatible utility to make metakeys (Ctrl, Alt) sticky? > I've heard that in newer Windows software, it is standard, but are there > any old utilities around to help him? > Ftp or gopher to handicap.olivetti.com and look in the /pub/mobile directory. The utility that you are looking for is: accdos11.zip Which is an one-finger utility for DOS. There are also various other utilities such as word predictors, macro programs, etc in that same directory that should help. Here is the current index for that directory: Information And Programs For The Mobility Impaired Sticky key utilities AccessDOS is a package of keyboard, mouse and sound utilities. Included are: Sticky keys, Repeat keys, Slow keys, Bounce keys, get key input from a device on the serial port and visual beeps. It was developed by the Trace Research and Development Center at the University of Wisconsin-Madison. These files and the Dvorak Keyboard drivers are both from the DOS 6.0 supplemental file disk (also available here as DOS6SUPP.EXE). For Windows, use ACCP20, the Access Pack for Windows which will provide the same functions as the AccessDOS but only for Windows applications. If you need to run DOS applications under Windows, you will still require the AccessDOS program. ACCDOS11.ZIP 101812 07-07-93 Version 1.1 Access DOS (DOS 3.3 to DOS 6.0) ACCP20.ZIP 257356 07-15-92 Version 2.0 Access Pack for Windows 3.0/3.1 1FING505.ZIP 13388 06-11-92 1-Finger combines the features of keylock and staydown along with a few other programs. COMPKEY.ZIP 1463 03-30-89 Compares keylock, staydown, mindreader programs COMPKEY.TXT 1199 10-05-89 Dvorak keyboard drivers for specialized keyboards and for one-handed typists. This is from the DOS 6.0 supplemental package DVORAK.ZIP 5682 07-07-93 Dvorak one-handed keyboard drivers DOS6SUPP.EXE 537668 07-07-93 Dos 6.0 Supplemental File package including AccessDOS and DVORAK keyboard drivers HSH.ARC 11657 04-14-89 A keylock type program for Unix machines HSHFT203.ZIP 46517 02-03-94 Sticky key demo (Dos and Windows) KEYLOCK.ZIP 5546 03-30-89 Turns alt and control keys into locking keys STAYDOWN.ZIP 9159 03-30-89 Like keylock but keys not permamently locked Word Predictors The next several programs offer word prediction. You enter the first few letters of a word and then either automatically or via a special hot key, the word predictor program will bring up a choice of possible words. Some of the programs will change the list of words based upon your past useage. Mindreader is a shareware word processor while HWORD30P is a demo of HandiWORD from Microsystems Software. HandiWORD is a memory resident word predictor that is compatible with many commercial word processors. KeyCache is a TSR word predictor written by Eric Bohlman that is designed to work with any program. There is a separate version of KeyCache for use with Windows. HWORD302.ZIP 140729 02-02-94 Demo of HandiWORD word predictor (Vers 3.02) HWRDW300.ZIP 140729 02-03-94 Demo of HandiWORD predictor (Windows) KCD22.ZIP 15356 12-16-94 KeyCache for DOS: TSR word predictor and much more KCW10.ZIP 38915 12-16-94 KeyCache for Windows: TSR word predictor and much more MINDRD25.ZIP 168221 06-09-93 Mind reader word processor Command Line Editors Command line editors allow you to recall past commands with just one key and will often complete file and directory names. Anarkey is a popular command line editor. Version 4 has more features and can be loaded into extended memory but needs to have a 8 digit number typed in each time it is loaded until it is registered. ANARKEY2.ZIP 102249 03-23-90 Version 2 command line editor ANARKEY4.ZIP 132750 07-18-91 Version 4 command line editor DOSED517.ZIP 15798 05-26-94 Command line editor PROKEZ14.ZIP 21563 05-26-94 ProKeys: Command line editor Other Various Programs 1HAND.ZIP 65204 03-04-93 Allow keyboard to be used with only one hand. DRAGGER was designed for Windows users who can manipulate a mouse (or any other Windows compatible pointing device, e.g, lightpen, trackball, joystick, etc) but who cannot a drag and/or a double click of the left button. DRAGGER.ZIP 15262 07-15-92 Allows one click of mouse to work with Windows HANDIKEY and HANDIKED are demos of HandiKEY from Microsystems Software. It is a memory resident program which uses a scanning matrix approach to provide an alternate means of entering keyboard strokes. HKEY217.ZIP 194907 02-02-94 Demo of HandiKEY scanning matrix program HKEYW217.ZIP 165569 02-02-94 DEMO of HandiKEY DELUXE for Windows 3.1 QUICKEY.ZIP 187796 02-03-94 DEMO of HandiKEY for PRC Headmaster HCODE210.ZIP 128360 01-27-94 Demo of HandiCODE Morse Code input program H-KEYINF.ZIP 7206 03-30-89 Info on h-key word processor H-KEY.ZIP 34553 01-08-90 Word processor for the mobility impaired HPHONE20.ZIP 46696 03-02-93 DEMO-Allows PC to control speakerphone/headset HPHON204.ZIP 48531 02-03-94 DEMO-Allows PC to control speakerphone/headset KEYBOARD.BAS 3099 01-17-89 One key entry basic program NEWKEY54.ZIP 200826 07-03-91 Keyboard macro program NOKEYS12.ZIP 14140 09-04-91 Use mouse or trackball for computer input ONCEV11.ZIP 1837 03-30-89 Disables auto-repeat on keys Virtual on-screen keyboards: Programs that display a keyboard on the screen and allow the user to use any Windows compatible pointing device (mouse, head pointer, etc) to enter keystrokes without using the actual keyboard EEK16.ZIP 21489 12-16-94 Windows program that allows you to send keystrokes to other applications with a mouse, trackball, head pointer, etc SFTKBD10.ZIP 28552 06-17-92 Virtual on-screen keyboard - uses mouse SOFTYPE.ZIP 385857 12-14-94 Demo of SofType virtual keyboard including scanning, word prediction, dragger and more Voice Recognition programs VOX30ASH.ZIP 265527 05-10-94 Voice recognition using Sound Blaster Pro VSH20SH.ZIP 59620 05-10-94 Vox tools for use with VOX voice recognition software Other various information files CHAIRS2.ZIP 14640 12-03-92 List of wheelchair manufacturers (11/92) CONTOUR.ZIP 3604 09-21-93 Describes "contoured positioning" a radical new technology in wheelchair design with great potential to help relieve decubiti, etc QUAD-LRN.ZIP 1260 03-30-89 Computer learning for quadriplegics QUAD-LRN.TXT 827 01-17-89 TRAILERS.ZIP 9521 09-21-93 "How To Modify A Trailer for Accessibility*" (* Up To A Point") explains what can be done with a trailer or manufactured home VAN_CONV.ZIP 6078 03-30-89 Designing a van conversion WS2000.ZIP 1511 03-30-89 Word Star 2000 for the handicapped The following are the search results of the ABLEDATA database on some common topics (Thanks to Dan Wendling on these.) BATHLIFT.ZIP 7043 03-01-93 ABLEDATA fact sheet: Bath lifts (3/89) CARSEATS.ZIP 9779 03-01-93 ABLEDATA Fact Sheet: Car seats (8/91) CUSHIONS.ZIP 8408 03-01-93 ABLEDATA fact sheet: Cushions (9/91) LIFTS.ZIP 3641 03-01-93 ABLEDATA fact sheet: Stair lifts (2/90) MODULAR.ZIP 9526 03-01-93 ABLEDATA: Modular seating components (5/90) PATIENT.ZIP 5122 03-01-93 ABLEDATA fact sheets: Patient lifts (4/90) RAMPS.ZIP 4113 03-01-93 ABLEDATA fact sheet: Ramps (1/90) RECLINE.ZIP 5461 03-01-93 ABLEDATA facts: Reclining bath seats (4/89) SCOOTERS.ZIP 8050 03-01-93 ABLEDATA fact sheet: Powered scooters (11/91) STANDING.ZIP 8593 03-01-93 ABLEDATA fact sheet: Standing Aids (12/91) TILT-N-S.ZIP 13581 03-01-93 ABLEDATA fact sheet: Tilt wheelchairs (3/90) VANLIFTS.ZIP 8103 02-27-93 ABLEDATA fact sheet: Van lifts (11/90) (7) ===== support group meeting ========== Source: RICHMOND TIMES-DISPATCH 01/26/95 Column: Meetings planned for support groups < parts deleted > Lou Gehrig's disease support group A support group for Richmond-area residents with amyotrophic lateral sclerosis (Lou Gehrig's disease), their families and friends will meet at 7:30 p.m. tomorrow at Children's Hospital, 2924 Brook Road. For more information, call 282-1550. < parts deleted > (8) ===== Postdoctoral fellowship ========== >From : BIOSCI-REQUEST@net.bio.net Fri Feb 10 14:37:27 1995 Date : Fri, 10 Feb 1995 14:27:19 -0500 (EST) >From : NANCY MURRAY COOK To : amyloid@net.bio.net Subject: Postdoctoral fellowship A position is available in cellular & molecular neurobiology for a Ph.D. or M.D./Ph.D. Research projects involve transgenic and gene targeting strategies to generate animal models of human neurodegenerative diseases, including Alzheimer's disease, ALS, and spinal muscular atrophy. Studies of the mechanisms of neuronal degeneration/regeneration and cell death are integral to our program. A strong background in cellular & molecular biology and a familiarity with neurobiology are desirable. PLEASE, because of funding restrictions, U.S. CITIZENS OR PERMANENT RESIDENTS ONLY! Equal Opportunity Employer; women and minorities are encouraged to apply. Send CV (and have letters of reference sent to) Dr. Donald Price, Neuropathology Laboratory, The Johns Hopkins University School of Medicine, 720 Rutland Avenue, 558 Ross Building, Baltimore, Maryland 21205-2196. === end of als 173 ===