=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#67, 11 November 1993) == == == == ----- 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 == == 160+ 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 32310 USA == =============================================================== == Back issues are available via e-mail from: == == LISTSERV@mailer.fsu.edu == == send an e-mail message that says INDEX ALS == == Also available via anonymous FTP at mailer.fsu.edu == == directory ftp/pub/als == =============================================================== (1) ===== better late than never! (?) ========== > : CompuServe Mail >Date: 11-Aug-93 17:21 EDT >From: John H. Bartels 71170,464 [71170,464] > : Internet: 71170.464@compuserve.com >Subj: ALS interest group? >To : 72237,1613 Robert L. Broedel > >Dear Bob, > >Sent this message @ 16:17 CDT 31-Jul-93 - trying again - >anybody home? Noticed your name mentioned in Spring '93 >issue of LINK (Vol 7 #1) on p10 under title: "NEW ALS >INTEREST GROUP SHARING INFORMATION AT HIGH SPEED" - mentioned >BITNET, Internet, Compuserve, America on Line, Delphi, PeaceNet, >MCI Mail, Genie or any other system that has an "Internet Gateway". >I have ALS (was diagnosed 1/18/84 and, at 9+ years, am becoming >something of a "medical curiosity") and am curious about the >"group". > >From Prodigy company news Thursday afternoon I see: > >7/29/93 Analyst Gets Early Clues On Regeneron Pdt Via Computer > By Phillip E. Nalbone > Dow Jones Staff Reporter > NEW YORK -DJ- Merrill Lynch biotechnology analyst Stuart >Weisbrod has joined the fast-growing ranks of America's computer >bulletin board users, and so far his electronic networking seems >to have yielded some interesting impressions of a Regeneron >Pharmaceuticals Inc. (REGN) drug in clinical testing to treat >Lou Gehrig's disease. > >and: > > Weisbrod says one of the big national computer networks, which >he declines to identify, has a special bulletin board, or ''forum,'' >for Lou Gehrig's patients to communicate with each other, in >addition to forums for several other patient groups. The analyst >used the computerized network to send a message to Lou Gehrig's >patients enrolled in clinical trials, and several patients >responded. > >and so forth. > >So, I searched the Prodigy & Compuserve directories for Mr. Weisbrod >and came up empty. Then I downloaded CIS's Forum list - nothing on >ALS. I did spot a MEDSIG forum - but haven't joined - seems to be >for medical professionals. > >In any case, can you fill me in on what is up here? I would appreciate >it - I am too far gone to be helped by any of this - but am curious. > >This will be the first message I have sent on CIS in about 2 years! > >Thanks for any info. > >John H. Bartels >160 Poplar >Elmhurst, IL 60126 >1-708-834-5371 > Dear John, Sorry for the late response to your message to my CompuServe account. The thing is, I have *two* CompuServe accounts. I use one of them every day (71107.1710@compuserve.com) but your message came to the account that I "loan" to visiting Russians, to my Russian language translator, etc. But now that my wife has ALS I no longer work east-west projects so the second account is rarely checked. But hey, it was great to hear from you. I have added your address to the distribution list. I assume that Stuart Weisbrod is referring to the Progidy net but fact is, I don't know. Maybe by now you already know the answer ... if not I bet others here can help. Hope so. Anyway ... it was great to hear from you. Hope you find this group useful. rgds,bro (2) ===== Advance Directive Summary ========== Date : Thu, 28 Oct 1993 15:01:19 PDT From : Susan Adler To : Multiple recipients of list MEDLIB-L : Subject: Advance Directive Summary Thanks to everyone who sent in a response to my query about advance directives. These are what I've received so far: ----- Medcom has a couple of videos, though I have not myself seen them. You might also get in touch with the Society for the Right to Die. Blanton McLean Library Director Eastern State Hospital Williamsburg, Virginia bmclean@leo.vsla.edu Medcom/Trainex 12601 Industry Street Garden Grove CA 92641 FAX 714-898-4852 (800) 877-1443 ----- In answer to Susan's request about videos on advance directives, I suggest checking out the one distributed by the AHA called Advance Directives: Guaranteeing your Health Care Rights. I am a member of our hospital's Patient Education TV Committee which has been evaluating videos for use on our new Patient Education channel. The Committee (multidisciplinary including Nursing, Patient Representative, Social Services, etc.) looked at a number of videos on this topic and settled on the AHA tape for patients due to the content, presentation style, and the length. We are adding a short piece to run right after it that talks specifically about the New York Health Care Proxy and the form available at our hospital. Debbie Rand Long Island Jewish Med Ctr Library rand@aecom.yu.edu ----- I can suggest three books you might consult: Planning for Uncertainty: A Guide to Living Wills and Other Advance Directives for Health Care; by David John Doukas, MD and William Reichel, MD; Johns Hopkins University Press; 1993 Death and Dignity: Making Choices and Taking Charge by Timothy E. Quill, MD; W.W. Norton & Company, 1993 A Good Death: Taking More Control at the End of Your Life; by T.Patrick Hill and David Shirley (Choice in Dying, the national council for the right to die) Addison-Wesley Publishing Company, Inc., 1992. All three books include sample forms for advance directives, and health care proxies. A sample Durable Power of Attorney is included in the first and last book listed The last book (A Good Death) includes a listing of the publications available from Choice in Dying, Inc. and includes pamphlets, books, and videos - their address is 200 Varick Street, NY, NY 10014. Of course, each of the books stresses that legislation varies from state to state. Again, Choice in Dying offers particulars about state laws by contacting them at (212) 366-5540. The first book mentioned, Planning for Uncertainty, is in a question and answer format which tries to address common questions people ask about advance directives. Death and Dignity (the second book), includes an Appendix of questions and answers and attributes the information to the New York State Department of Health. Hope these suggestions are helpful. Sharon Quist SUNY Health Science Center Library Syracuse, NY QuistS@vax.cs.hscsyr.edu ----- There are two booklets in our collection here which staff have found very useful: Brown CS, et al. Decide for yourself: life support, living will, durable power of attorney for health care. Atlanta, Pritchett & Hull, 1993. Pritchett & Hull Associates Suite 110, 3440 Oakcliff Road Northeast Atlanta, Georgia 30340-3079 Approximately $3.95 U.S. Molloy DW, Mepham V. Let me decide. Hamilton, Ontario : McMaster University Press, 1990. Dr. D.W. Molloy Hamilton Civic Hospitals Henderson General Division 711 Concession Street Hamilton, Ontario CANADA L8V 1C3 Approximately $3.00 Cdn each. There is also a video entitled "My health care - I decide" done by Dr. Molloy and available from the same address for $30.00 Cdn. They have all been very popular here - am not sure whether the fact that they are Canadian will have an impact in your context - they do deal with the subject very well and do not deal with specific legislation. Feel free to contact me if you need any further information. Judy Inglis J.W. Crane Memorial Library Deer Lodge Centre 2109 Portage Avenue Winnipeg, Manitoba R3J 0L3 Tel: (204) 831-2152 FAX: (204) 888-1805 Internet: ingles@access.mbnet.mb.ca ----- The Heart of Illinois Library Consortium (HILC) has just published a bibliography on advance directives which includes a variety of different resources on this topic including names and addresses of associations. If you wish to receive a copy of the bibliography please e-mail me your name and address and telephone number. Deirdre Redington Technical Services Librarian Bradley University Peoria, IL 61625 Telephone: (309) 677-2838 Internet: reding@bradley.edu ----- Dear Susan, In developing the collection for our Patient Education Resource Center I tried to collect extensively in the area of advance directives. I'm including the file of books, videos, and pamphlets. Let me know if there are any problems with transmission. BOOKS AND VIDEOS Barnett, Terry James. Living wills and more : everything you need to ensure that all your medical wishes are followed. New York: Wiley; 1993. 248 p. ISBN: 0471 573949 (paper). Carroll, David. Living with dying : a loving guide for family and close friends. 1st pbk. ed ed. New York, N.Y: Paragon House; 1991. xviii, 389 p. ISBN: 155778356X. Flynn, Eileen P. Your living will : why, when, and how to write one. Secaucus, N J: Carol Pub. Group; 1992. ix, 86 p. ISBN: 0806512946 (paper). Legal Counsel for the Elderly (Washington, D. C. ).; American Association of Retired Persons. Planning for incapacity : a self- help guide : advance directive forms for Pennsylvania. Washington, DC: Legal Counsel for the Elderly; 1992. vi, 38 p. Legal Counsel for the Elderly (Washington, D. C. ).; American Association of Retired Persons. Planning for incapacity : a self- help guide : advance directive forms for Ohio. Washington, DC: Legal Counsel for the Elderly; 1992. vi, 38 p. Living wills [[videorecording]]. Films for the Humanities (Firm). Princeton, NJ: Films for the Humanities & Sciences; 1992. 1 videocassette; sd., col 1/2 in. 1-800-257-5126 Quill, Timothy E. Death and dignity : making choices and taking charge. New York : W.W. Norton; 1993. 255 p. ISBN: 0393034488. Van Allen, Evelyn J. You decide : using living wills and other advance directives to guide your treatment choices. Burr Ridge, Ill Chicago: Irwin Professional Publishing American Hospital Publishing, Inc; 1994. xiii, 163 p. ISBN: 155623936X Your future, who decides? [[videorecording]]. American Association of Retired Persons; Criminal Justice Services; Hal Kirn Associates. [Washington, D.C.]: AARP; 1988. 1 videocassette (21 min.); sd., col 1/2 in. +. PAMPHLETS About Advance Medical Directives 1991 Advance Medical Directives -- something to think about 1993 What everyone should know about life-sustaining treatments 1993 All of these are available from an excellent company and are written at the 4th - 6th grade level. The price is about $1.00 each : Channing L. Bete Co., Inc. 200 State Road South Deerfield, MA 01373-0200 1-800-628-7733 Product Report : Living Trusts & Wills 1991 Planning Ahead American Association of Retired Persons 601 E Street, NW Washington, DC 20049 Organizing Your Future: a guide to decisionmaking in your later years 1990 Legal Counsel for the Eldery, Inc. AARP 601 E Street, NW Washington, DC 20049 This group has specific information available for each state. Advance Medical Directives for Patients: a guide to living wills and powers of attorney for health care 1992 American Medical Association 515 North State Street Chicago, IL 60610 Medicare and Advance Directives 1992 U.S. Dept. of Health and Human Services Health Care Financing Administration Publication No. HCFA 02175 Medical Treatments and Your Living Will Choice in Dying P.O. Box 529120 Dallas, TX 75356-9120 They also have Advance Directives appropriate for each state. Stephanie Publicker Patient Education Librarian Falk Library of the Health Sciences University of Pittsburgh spu@med.pitt.edu ----- Hello Susan Adler, I responded on MEDLIB last evening to your question about advance directives from home because I could search our online catalogue and get the information I wanted at the time. Arriving at work this morning, I have picked up the earlier of the two books by D.W. Molloy and am reminded by looking at it that it is definitely intended for the patient and his or her family. Dr. Molloy is a geriatrician on our faculty here at McMaster and his co-author is a feminist nurse who was recently widowed. Their little booklet is intended to help the patient record directions for his or her own health care long before reaching the point of incapacity. It is printed, for instance, in large print and explains the difference between wills, powers of attorney, instructional directives and proxy directives. It explains irreversible and reversible conditions, palliative care, various types of feeding, and other issues related to the decisions that need to be made around advance directives for health care. There is a sample (but usable) Personal Health Care Directive form (4 pages) in the centre of the booklet which can be removed for filling out and there are extensive directions in the book to guide the user through the form. Once again, the book is: Molloy DW, Mepham V. _Let me decide_ Toronto: Penguin Books, 1992 (first published in 1989). ISBN 0-14-017267-X You ought to be able to buy it through Penguin Books USA Inc., 375 Hudson Street, New York, NY 10014. There is a note regarding bulk purchases of it inside the front cover; if you need that information, let me know. ....................................................................... Tom Flemming Internet: tomflem@fhs.csu.McMaster.ca Health Sciences Library Envoy 100: mac.lib.hsl McMaster University LIFEnet: TFLEMMIN@life.jsc.nasa.gov 1200 Main Street West Hamilton, Ontario L8N 3Z5 (905) 525-9140 x2-2321 work Canada (905) 527-2848 home ........................................................................ (3) ===== Triplicate Messages ========== >Date : 29 Oct 93 17:34:41 EDT >From : Barry Goldberg <71154.330@CompuServe.COM> >Subject: Triplicate Messages > >Hi, Bob! I just thought I'd let you know that I just received >three of the same message from Grant Nicholas regarding the new >ALS Digest. There are several instances where I'm still getting >duplication as well. Are we having more problems with the host? >I also noticed that Grant addressed this message through >ALS-request@huey. Is this possibly the reason? Thanks! >--- >MDA -- Working to find the cure for neuromuscular disease > Barry, I don't know exactly why it happens (ever so often). I think it is a problem with the mailer software on the computer Huey. We will be updating that software soon so maybe that will take care of the problem. Hope so, because CompuServe subscribers like yourself are having to pay to receive Internet messages. By the way, you are not alone, presently there are 25 CompuServe folk subscribing to this list. So it is a problem that needs to be solved soon. rgds,bro (4) ===== another neurology-related list ========== ------------------------------------------------------------------ Date : Tue, 9 Nov 1993 09:00:20 CST Reply-To: jnorris@porpoise.oise.on.ca, patterso@fhs.csu.mcmaster.ca Sender : NEW-LIST - New List Announcements From : Judy Norris Subject : NEW: PARKINSN - Parkinson's Disease Information Exchange Network PARKINSN on LISTSERV@VM.UTCC.UTORONTO.CA or LISTSERV@UTORVM.BITNET Parkinson's Disease Information Exchange Network PARKINSN is an open, unmoderated, international forum that provides an information exchange network for individuals interested in Parkinson's Disease. Subscribers include persons with Parkinson's disease, family members and friends, health care workers, researchers, and others wishing to know more about this disease. Any topic related to Parkinson's disease is appropriate for discussion. To subscribe, send an email message to: LISTSERV@VM.UTCC.UTORONTO.CA or LISTSERV@UTORVM.BITNET In the BODY of the note say ONLY: SUB PARKINSN yourfirstname yourlastname To correspond with the list manager, send mail to the owner. Owner: Barbara Patterson patterso@fhs.csu.mcmaster.ca ---------------------------------------------------------------------- == end of als 67 ==