Date: Tue, 8 Nov 94 08:19:14 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#143 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#143, 08 November 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. The ALS Digest is == == published (approximately) weekly. Currently there are == == 380+ 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 .. ALS DIGEST BACK ISSUES 2 .. als, cat scratch fever 3 .. re: Pycnogenol 4 .. some questions 5 .. New Drug Treatments for Parkinson's Disease 6 .. Neurology Trials 7 .. Ronald Reagan's letter (1) ===== ALS DIGEST BACK ISSUES ========== Date : Fri, 04 Nov 1994 16:56:29 >From : Stuart.Neilson@brunel.ac.uk (hssrsdn) Subject: Re: ALS DIGEST BACK ISSUES Thanks to everyone who has offered help and checked that the WWW archive of ALS digests is accessible (Peter Robson: Sorry I couldn't reply, the mail was returned). As far as I can tell, the digests 120-140 can now be obtained by all web browsers as plain ASCII text, just as they were originally mailed. The URL is: http://http1.brunel.ac.uk:8080/~hssrsdn/ I would like to include some other items on this site - eg: a plain language guide to what ALS/MND is, a list of bodies offering support, a guide to doctor-speak, etc., and I would appreciate your help in constructing such documents (if you have any to hand, own the copyright and would like to include them, then please Email me!). I have put a bibliography of ALS/MND papers for 1994 under CSHSD->Publications for anyone who wants a comprehensive list of recent research (sorry, it's only author, title and journal at the moment because I'm not sure about copyright issues - if anyone can assure me of legality, I'll put up abstracts too). I would also like to reassure you, although nobody has asked yet, that documents will be placed on the system AS DELIVERED, with full credit to the originator (unless you state explicitly otherwise). Best wishes, Stuart PS: Any MS-DOS disk is fine for the back-issues. (2) ===== als, cat scratch fever ========== Date : 06 Nov 94 19:36:23 EST >From : Wayne Phillips <70303.173@compuserve.com> Subject: als, cat scratch fever In issue 118 I suggested cats as a possible source of the enterovirus RNA found in some ALS spinal cord tissue, mentioned in issue 115. 2 responses: Dr. Dan Rosen responded, saying that there are many things that may cause mutations. Viruses are fairly specie specific. Tying familial ALS mutations to the enterovirus didn't seem likely to him. The cat we had with feline viral leukemia recovered only to die later from a cancerous tumor. She died several months prior to my contracting cat scratch fever. After digging through medical records regarding my cat scratch fever, I found I was treated with vibramycin, an antibiotic, so the cause must be bacterial, not viral. Dr. Rosen thought so. Rats. One other patient also had cat scratch disease, and his ALS is quite similar to mine, so there may be a connection with the bacterial infection. It doesn't prove this is the cause, but it's worth checking for further corellations, which I will do. His cat scratch fever was 7 years prior to ALS onset at age 31, and has lived 3 years so far. My onset was at age 29, 5 1/2 years ago, 6 years after cat scratch disease. We are both sporadic, limb onset, slow progressing, limbs more affected than trunk, hands and feet more affected than shoulders and hips ("distal to proximal"), with bulbar involvement lagging the rest of the body. Wayne Phillips 70303.173@compuserve.com (3) ===== re: Pycnogenol ========== Date : 06 Nov 94 19:36:46 EST >From : Wayne Phillips <70303.173@compuserve.com> Subject: re: Pycnogenol Based on the report of dramatic improvement with Pycnogenol in #112, I tried it as reported (20 mg. per 20 lbs. weight for a month, then cutting in half). I saw no dramatic improvement in my strength; my illness continued to progress. It may aid somewhat in my daily strength, but that is difficult to measure. I have a sporadic, limb-onset, distal-to-proximal, slow progressing, early onset (age 29) form. My hands are slightly more affected than my feet. I have bulbar symptoms, but they lag my hands and feet. Perhaps Pycnogenol dramatically helps some patients but not others. This may aid in partitioning the illness into subgroups with different eitologies. Has anyone else tried it? Wayne (4) ===== some questions ========== > >Subject: SUBSCRIBE ALS >From : krampetzg@vtnet.com >Date : Nov 7 14:42:11 1994 > >Dear Mr. Broedel, >I would like to subscribe to ALS Digest. >My mail address is krampetzg@vtnet.com > You have been added to the distribution list for the ALS Interest Group. Welcome to ALS-ON-LINE! > >Is there a way to get previous issues? > Some time ago they were available via FTP, via gopher, via e-mail, etc. at the university where I work. But they got deleted by mistake and were not replaced. But soon they will be available on-line from a site in England. Stay tuned for the latest info on this and read note (1) of this issue. > >Do you have a ALS FAQ? (frequently asked questions list) > In a week or so I hope to have the first draft of an ALS-ON-LINE FAQ. It will not be about ALS but will be an overview of on-line resources that relate to ALS. > >Do you have an ALS Reasources list? > That will be a part of the ALS-ON-LINE FAQ. > >Have you considered applying for a Usenet news group designation? > No, but that does need to be done by someone. Probably it should be called alt.support.als. If someone does start such a news group, I am certain that it will have the blessings/participation of ALS Digest subscribers. Another thing that is needed is an unmoderated LISTSERV for discussion about ALS. Someday these types of things will happen but it will be because of the efforts of others rather than by myself. > >Are you aware of the other ALS groups on Compuserve, Prodigy, America >Online, etc. Do you have addresses for them and if you do shouldn't we >pool our reasources? > Past issues of the ALS Digest have mentioned Prodigy & CompuServe, and have included information about how to join them. I did not know that America Online had an ALS group. Hopefully one of the America Online subscribers will let us know what is happening on aol.com as regards ALS. The ALS Digest has been set up so most anyone can subscribe ... including delphi.com, compuserve.com, aol.com, progdigy.com, BITNET, Internet, mcimail.com, att.com, genie.geis.com, and a few others who are on fidonet, or are reachable via the Internet-to-FAX gateway, etc. Also, it is an international network, with subscribers from Iceland, Spain, France, Germany, Poland, Argentina, Australia, Mexico, Taiwan, Switzerland, Canada, England, Russia, Japan, Greece, Norway, and a few other countries. So in a way we are pooling resources, but not enough ... much more needs to be done. I am especially interested in bringing more ALS researchers on-line with us. > >Thanks for your help and time in advance. >Sincerely, >Geoff krampetz > rgds,bro (Bob Broedel) (5) ===== New Drug Treatments for Parkinson's Disease ========== Date : Mon, 31 Oct 1994 16:25:05 +0500 Sender : Parkinson's Disease - Information Exchange Network : >From : Barbara Patterson Subject: New Drug Treatments for Parkinson's Disease (fwd) Hi. I found this while 'gophering'. Barb ========================================================================= Barbara Patterson patterso@fhs.csu.mcmaster.ca HSC 2J22 905-525-9140, ext. 22403 School of Nursing ========================================================================= ---------- Forwarded message ---------- Date : Sun, 30 Oct 1994 23:56:20 -0500 >From : Barbara Patterson Subject: New Drug Treatments for Parkinson's Disease New Drug Treatments on Parkinson's Disease APDA Newsletter, Winter 1993-1994 Copyright 1993, Reproduced with Permission Abraham Lieberman, M.D. Chief Movement Disorders Barrow Neurological Institute Phoenix, AZ Chairman, APDA Medical Advisory Board Levodopa combined with carbidopa (Sinemet, Atamet) remains the mainstay of Parkinson's disease (PD) treatment. Initially, most patients respond well. Indeed, failure to respond to levodopa indicates a condition other than PD. After an initial good response, most patients develop daily response fluctuations, the "on- off" effect, after 2 to 5 years of treatment. These fluctuations are related in part to progression of PD and in part to levodopa metabolism. Several drugs are used to reduce fluctuations. These include a long acting levodopa preparation (Sinemet CR) and drugs that block one of the enzymes that break down dopamine, like deprenyl (Eldepryl), and dopamine agonists like (bromocriptine (Parlodel) and pergolide (Permax)) that supplement the actions of levodopa. While these treatments are helpful, response fluctuation remains a major problem. Several new treatments are being developed and tested at selected research centers. The following treatments are being tested at the Barrow Neurological Institute in Phoenix, Arizona: Dopamine Agonists: Three new dopamine agonists which may have advantages over bromocriptine and pergolide. Cabergoline, like bromocriptine and pergolide, is an ergot compound. It is longer acting than bromocriptine and pergolide and is administered on a once a day basis. Cabergoline is especially useful in patients with response fluctuations. Ropinerole, a non-ergot agonist with properties different from Cabergoline, is also useful in patients with response fluctuations. Pramipexole is an agonist with properties different from Cabergoline and Ropinerole. In one study Pramipexole is given to patients with advanced PD who have the "on-off" effect, while in another study it is administered to patients with early PD. Pramipexole delays the need for levodopa and is especially useful in relieving tremor. Because of differences in the way PD patients respond to drugs it is important that several agonists be available. MAO Blockers: Lazebemide, like deprenyl, blocks the enzyme monoamine oxidase (MAO). And, like deprenyl, it prolongs the actions of levodopa and delays the need for levodopa. As with the dopamine agonists it is desirable to have several MAO inhibitors available. In addition to their ability to increase the effectiveness of levodopa, MAO inhibitors may protect cells from dying. Trials of all of the MAO inhibitors are now being conducted in other diseases where neurons (nerve cells) die prematurely, such as Alzheimer's disease and Amyotrophic Lateral Sclerosis (ALS/Lou Gehrig's disease). COMT Blockers: Tolcapone blocks the enzyme COMT, prolonging the action of levodopa, and markedly reducing the "on-off" effect. Tolcapone is being studied in patients with advanced PD and will be studied in patients with early and moderate PD. Low Protein Diet: A balanced 7:1 carbohydrate/protein ratio food supplement (Hearty Balance) allows levodopa to act longer. Ninety seven PD patients with fluctuations were evaluated at 4 separate centers. The high carbohydrate and 7:1 carbohydrate protein beverage resulted in significant improvement, in all symptoms measured, over a high protein beverage. The availability of this palatable, easy to use, balanced carbohydrate/low protein diet provides a dietary means of controling response fluctuations. Growth Factors: CNTF is a trophic growth factor, that is being studied in ALS. CNTF stimulate the growth of dying cells in the spinal cord and hopefully will alow them to regenerate. CNTF is one of a class of compounds that holds promise for the treatment of degenerative diseases such as PD, ALS, and Alzheimer's disease. Prior to the advent of trophic factors, treatment of these disorders was directed at lessening symptoms or possibly, as with MAO inhibitors, at slowing the progression of PD. Although CNTF is now being used on an experimental basis only for the treatment of ALS, we hope eventually to be able to use it in the other diseases. GDNF and BDNF are trophic factors that are specific for the dopamine producing cells that are involved in PD. (6) ===== Neurology Trials ========== Date : Mon, 7 Nov 1994 11:54:04 -0500 >From : TrialsInfo@aol.com Subject: Neurology Trials Sender : clinical_trials-approval@world.std.com Does anyone have any information about clinical trials databases for neurologic diseases in general, or for any specific neurologic disease? Thanks very much. (7) ===== Ronald Reagan's letter ========== >From : syusim@bcm.tmc.edu (Solomon Yusim) Date : Mon, 7 Nov 1994 14:40:19 -0600 Subject: Re: Ronald Reagan's letter re: AD Sender : owner-alzheimer@wubios.wustl.edu On Nov 7, 11:34am, Susan Kacerek wrote: >Hi -- I work at the Cleveland Area Chapter of the Alzheimer's >Association and would like to obtain a copy of the letter >that former President Reagan wrote to the American public about >his diagnosis of AD..anyone out there know how to obtain a copy? >I have sent e-mail to the Whitehouse asking for a copy as well >as asked a friend who works for NIH to see if they have seen a >copy...Thanks... Please see below. Solomon Yusim Houston, Texas ---------------------------------------------------------------------------- Date : Mon, 7 Nov 1994 10:36:00 EST Sender : Communication Research and Theory Network >From : Tom Benson 814-865-4201 Subject: CRTNET 1095 +--------------------------------------------------------------------+ | | | CRTNET | | | | November 7, 1994 | | | +--------------------------------------------------------------------+ | Number 1095 | +--------------------------------------------------------------------+ | | | COMMUNICATION RESEARCH AND THEORY NETWORK | | | +--------------------------------------------------------------------+ | Edited by Tom Benson, Penn State University | +--------------------------------------------------------------------+ = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = CONTENTS -- -- President Reagan's Letter = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = Date: Sat, 5 Nov 94 19:00:36 CST [from] Maureen=Montgomery%employee%SJC@vines.saintjoe.edu Subject: President Reagan's Letter November 5, 1994 My Fellow Americans, I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer's Disease. Upon learning this news, Nancy & I had to decide whether as private citizens we would keep this a private matter or whether we would make this news known in a public way. In the past Nancy suffered from breast cancer and I had my cancer surgeries. We found through our open disclosures we were able to raise public awareness. We were happy that as a result many more people underwent testing. They were treated in early stages and able to return to normal, healthy lives. So now, we feel it is important to share it with you. In opening our hearts, we hope this might promote greater awareness of this condition. Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it. At the moment I feel just fine. I intend to live the remainder of the years God gives me on this earth doing the things I have always done. I will continue to share life's journey with my beloved Nancy and my family. I plan to enjoy the great outdoors and stay in touch with my friends and supporters. Unfortunately, as Alzheimer's Disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes I am confident that with your help she will face it with faith and courage. In closing let me thank you, the American people for giving me the great honor of allowing me to serve as your President. When the Lord calls me home, whenever that may be, I will leave with the greatest love for this country of ours and eternal optimism for its future. I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead. Thank you, my friends. May God always bless you. Sincerely, Ronald Reagan -------------------------------------------------------------------------- End of Forwarded Message === end of als 143 ===