Date: Tue, 29 Aug 95 22:02:58 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD211 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#211, 29 August 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == 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 == == 940+ 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: 0 .. Editorial 1 .. MDA and ALS 2 .. Care options for ALS patients 3 .. feeding tube management 4 .. re: B12 and ALS 5 .. Wasp Venom For Sale 6 .. Accident Induced ALS 7 .. ALS 8 .. ALS 9 .. thalidomide 10 . Some Thoughts on Lou Gehrig (0) ===== Editorial ========== 1 .. I think that I have published all notes that were sent to me. If it turns out that your note has not been published, please resend it/them to me. Anything that relates to ALS is welcome. 2 .. Back issues of the ALS Digest are available on-line at: http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/alsig.htm For those of you who do not have World Wide Web capability, please note that the 80 most recent back issues are on a 3 inch high density MS DOS diskette that will be mailed to all who send me their mailing address. If another diskette format is needed, please advise. 3 .. Please remember that the Editor is not a doctor, lawyer, etc. and that the ALS Digest is not a peer-reviewed effort. 4 .. A big thanks goes to all of you for being a part of this international electronic-mail-oriented ALS Interest Group. 5 .. The ALS Digest is my on-going effort to preserve the memory of my very best friend, Carmen M. Avila Ph.D. (25 April 1938 - 25 October 1994). (1) ===== MDA and ALS ========== Date : Sun, 27 Aug 1995 23:47:07 EDT >From : PDNS06A@prodigy.com ( D L BARBER) Subject: MDA and ALS My wife and I have just returned from The MDA's Focus on ALS Research and Clinical Trials forum near O'Hare Airport this afternoon. Among the panelists were: Drs. Teepu Siddique and Robert Sufit of Northwestern Medical Center of Chicago and Drs. Raymond Roos and Edgar Salazar-Gueso of the Univ. of Chicago Medical Center, along with each clinic's drug trials coordinators Patricia Casey, MS, OTR/L and Judy Richman, RN, BSN, respectively. The entire forum was live and on-line with MDA's MDAFORUM on Compuserve (yes, they had someone typing at the speed of light for over 4 hours), and approxi- mately 60 attendees. We got our notice only a week and a half in advance, which may have accounted for the (only) fair turnout, but it was made clear that the idea for this forum was conceived only a few weeks before that. Two of the Chicago area MDA Patient Service Coordinators were there, as were the District Director and the Assistant Regional Director. While some of the panelist's subject matter was very technical (medical jargon), most of it was comprehensible for us lay people. Dr. Siddique is still very involved in mapping the possibilities for the Familial form of ALS and had an application for family members to fill out and leave for later contact, in order for blood samples to be arranged, that the studies he is directing are broadened to a wider pool. During my own diagnosis, I was told by two doctors that the most likely place to find one (or more) of the secret(s) to ALS is in the familial form. Therefore, this arena of study is very, very important. The main focus of the forum was the drug trials themselves, so Ms. Casey and Ms. Richman provided all you could ask for on that subject. Riluzole is past the required trial phases (as is Myotrophin) and, of course, you have all heard or been contacted about the Early Access program now underway, via lottery. The general hope is that Riluzole will be approved in 1996, and that will be an important landmark, for more than one reason. First and foremost is that it will most likely be the first drug to be approved here in the US specifically for the treatment of ALS, and that in and of itself is absolutely wonderful. However, there is something of a shaded side to this likely event. If you look at the numbers, ALS statistics, and think about the fact that not two but three drugs have come onto the trial scene in just the past 5 or so years, a very large percentage of the ALS population that can meet the drug trial entry criteria have been put to the test and are on a trial or have completed a trial phase and are receiving the respective drug. This begs the question; Where are new ALS drug trial subjects to come from, to even fill out the desired population for phase 3 of the BDNF trial, recently underway, let alone any new drugs that may come into being in the near future ??? This question was not posed by anyone at the forum, but the numbers are fairly easy for all to see, considering a phase 3 trial (the largest) may look for as many as 1,000 patients, and there are somewhere around 5,000 new cases in the US every year. You can bet that not all new patients live within 100 or 200 miles of one of the test sights. Phoooey !!, you say?? My summation may not be a bulls eye, but I wonder why they also put an application to be contacted for information about the BDNF trial, into the information packet we all got. Another upcoming bridge to cross is that when Riluzole is approved (we hope it's not an if, anymore), what will that do to any new drugs that might be worthy of a full fledged trial process ??? Is it possible they will have to be tested in laboratory animals in combination with any drug(s) which have been approved before moving forward? If so, could that slow the process? This was not posed today either, but we do live in a world (at least the best country in it) that seems to want immediate results, and nothing less. To address the upcoming bridge I referred to, Dr. Sufit did say that Rilutek has begun experimenting with combinations of its drug and Myotrophin and BDNF, for safety, efficacy and side effects. Speaking of Myotrophin, its maker, Cephalon, is still pouring over the trial processes and the data from them, prior to applying to the FDA for approval. BDNF, as you've read, is currently early in phase 3, and apparently looking earnestly for more participants. This is a placebo-controlled trial, so if one cannot accept the rules of the game, one should not sit on the sidelines only to gripe. After all, if you know much about Riluzole, then you know that the criteria to get it to the FDA application stage included at least one placebo-controlled phase. So the question for any who may meet BDNF trial criteria and is not stepping up, is; Why is it only OK to reap what others have sowed, and to not sow yourselves? Besides, Riluzole isn't approved yet. The doctors all seemed to be in agreement that it may very well take a combination of medications to stop the progression of ALS. Likewise for the improbability of reviving neurons that have succumbed to its course, at least given present technologies and treatments. As for the epidemiology of ALS, from a causal point of view, Dr. Siddique shed some light here. Even in the island of Guam where there are numbers of ALS patients well beyond the norm of the rest of the world, what has been done around the world in this area has yielded virtually nothing. Although he implied that there had not been much done in this area, ALS is so rare that it may be difficult to wire down a cause(s) through epidemiological testing. However, I would like to think that with an attentive and willing audience here on the ALS Digest, some of the cost of doing a epidem ... survey could be kept down, and some/most of us could possibly help write the questions. I'm wrestling with that very issue..... and can use some tangible advice if you have some. Volunteers for today's forum will have transcripts available in about 10 or 12 days, and you can arrange to get one by calling 708-290-0060, and ask for Michelle Elliott. The requested donation for today was $5 per person in advance. I also found out that the MDA is heavily involved with both makers of BDNF, Amgen and Regeneron. That brings up another point ... with only 5,000 or so new cases every year in the US, and 25,000 or so that have it at one time, is it any wonder that drug companies have not pursued this market, out of only the goodness of their hearts? Bridget Carey, MDA Program Services Coordinator of Northern Cook County, deserves a hearty round of applause for a job well done in a very short time, especially so close to the MDA Telethon coming up this Labor Day weekend. Don't be surprised if you see excerpts from this forum during the TV broadcast. (2) ===== Care options for ALS patients ========== Date : Fri, 25 Aug 1995 17:51:11 -0400 >From : greg.anderson@cplc.com (greg anderson) Subject: Care options for ALS patients My mother is an elderly (78) ALS patient living at home with my father who is also in his late seventies. We are looking into organizations that provide assistance in the home for things like cooking and cleaning, as well as transportation and medical checkups. One federal organization is Senior Options, which will begin providing services in a month or so. We are also looking at what hospice has to offer. If anyone has experience, suggestions, or information on these or other care providers, please post them or email me. My parents live in Columbus,OH, and we are in North Carolina, so national support organizations or those regional to Ohio are of greatest interest to us. Thanks, Greg.Anderson@cplc.com (3) ===== feeding tube management ========== Date : 19 Aug 95 20:22:19 EDT >From : Wayne Phillips <70303.173@compuserve.com> Subject: feeding tube mgmnt I asked Mike Ward some questions on feeding tube management (not incl) and here are answers he asked me to post. Wayne, [scheduling and cost reduction] I dont eat orally any more but I did for a long time while I had the tube. I use a 60cc irrigation syringe for bolis feeding three times a day. Since I am on a vent I also take two cups of water every three hours to keep my lung secretions thin. So you can see my tube gets used constantly. We dont take the syringes apart rather we clean it by pumping water through it and oiling it with mineral oil prior to use. Another trick is to leave the syringe half closed so the next time you use it you can push the plunger in to break the rubber free from its natural tendency to stick in the barrel. By using this we can easily use a syringe for a month. As far as pills and such are concerned, we find mixing them with applesause will prevent them from settleing out. In general I mix medications with my meals and take all together. If I have trouble mixing them I just blend the meal. A trick to reduce intestinal gas is to suction out all the stomach contents and air before every meal. Put the liquid back in before you start the meal. Warning this can smell awful but that is normal. My insurance wont pay for Ensure either. Instead of Ensure we buy Resource. Resorce has almost identical composition to Ensure and is much cheaper. We buy it in bulk at Costco. I dont use Resource exclusively but also supplement some fruit in also. As for tube pluging. With blended foods that will always be a problem. We sieve foods after blending. Don't use a fine metal sieve rather use a tupperware spagetti colender with big openings. That will get the big lumps out quickly and you wont have plug problems. Using a sieve you can take any family meal and blend what you dont eat. Just add enough water to make the blended food thin enough so it seives and syringes easily. As far as feedings at work. I used to have the company nurse come by and feed me. Now I have an arrangement with my insurance company. Rather than they providing me with nurses or putting me in a skilled nursing home, they give me a set amount every month and with that I hire cna privately for my care. I train them to do suctioning and tube feedings. This gives me much more care and costs the insurance company much less. A true win win. I think this answers your questions. Don't hesitate to send me another note if you have more questions. yours, mike (4) ===== re: B12 and ALS ========== Date : 19 Aug 95 20:22:41 EDT >From : Wayne Phillips <70303.173@compuserve.com> Subject: re: B12 and ALS A year after my diagnosis, I had more tests done. I had low levels of B12 and folate and slightly low iron. I had high IgG. I did vitamin therapy for several months: oral B1, B2, B6, folic acid, iron, and IM B12 injections. It didn't halt my illness, so I stopped all but the B12 and folic acid. I'm still taking 1 ml. B12 IM daily and 5 mg. folic acid daily, and the few times I've missed either I'm *much* weaker and fatigue easily. If low B12 had caused ALS then the shots should have halted it. MAYBE there are different causes of ALS in different people, and low B12 is a side effect of one of those causes. Maybe such difficiencies can aid in dividing patients into subgroups and identifying a cause. Is anyone doing that? Wayne (5) ===== Wasp Venom For Sale ========== Date : Fri, 25 Aug 1995 10:50:58 -0700 >From : uc779@freenet.victoria.bc.ca (Conrad A. Berube) Subject: WASP VENOM FOR SALE I've been collecting nests of Dolichovespula maculata (bald-faced hornets) as part of a biological control program. Since I am interested only in the larvae for this matter I AM LOOKING FOR ANYONE INTERESTED IN PURCHASING THE ADULT FEMALE WASPS for the production of desensitization serum (such preparations are used to bolster the immune system of people who suffer from allergies to stings of hymenopteran insects ). The hornets are captured without the use of chemicals and are frozen while still alive. I would be able to supply approximately a kilogram of females, I am uncertain as to the amount of venom this would yield. Please contact me directly (via e-mail or at the snail-mail address or phones indicated below) rather than responding to the whole list or by using the "reply" function (which usually sends a response back to the list rather than the originator) as I do not subscribe to the mailing lists to which this is posted. Thank you for your assistance. Venom will be sold only to medical or research professionals. Hymenoptomistically, - Conrad Berube " ` ISLAND CROP MANAGEMENT " ` 1326 Franklin Terrace _- -_`-_|'\ /` Victoria, B.C. _/ / / -' `~()() V8S 1C7 \_\ _ /\-._/\/ (604)480-0223; fax (604)656-8922 / | | email: uc779@freenet.victoria.bc.ca '` ^ ^ (6) ===== Accident Induced ALS ========== >From : "J Louise Scanland" Date : Fri, 25 Aug 1995 08:53:52 PST8PDT Subject: Accident Induced ALS My brother was diagnosed last year with ALS. His symptoms seem to have begun after a neck injury. He is currently a part of a trial program in San Francisco. Have there ever been any accident related cases of ALS? He served in Vietnam with the Marines in 1966-67. Have any other ALS patients who served in Vietnam been diagnosed with ALS? Louise e-mail scanlandl@csus.edu (7) ===== ALS ========== Date : Fri, 25 Aug 1995 05:24:49 -0400 >From : DocDavy@aol.com Subject: ALS My father-in-law was recently diagnosed with ALS after many, many tests completed at the Lou Gehrig center in New York. I would like to know if ALS is hereditary and can be passed on to my wife or son as we are considering having more children. My father-in-law has no recollection of any family members dying from this disease and it appears that his case may not be familial. Is there any test to determine if a family member carries this disease genetically. I am available through E-Mail at: docdavy@aol.com PS-I am not an MD as the screen name implies. (8) ===== ALS ========== Date : Fri, 25 Aug 1995 17:32:50 -0500 >From : Keias@pic.net (Keith Engelbrecht) Subject: ALS In discussing ALS with my mother in-law, she as asked if there have been in studies linking the onset of ALS to having had major surgery or going under anesethic. She personally knows of 4 people in the Little Rock area who were (aparently) fine until they had a major operation where some type of anesethic was used. In my father in law's case, he had some major dental work done, then had some heart surgery, then a while later, after many tests was diagnosed as having ALS. If needed I could attempt to get the exact details on each case that she knows of.. We would appreciate any thoughts or info on this theory !!! Again, thanks for the ALS Digest, keep up the good work. Best Regards, Keith Engelbrecht keias@pic.net (9) ===== thalidomide ========== Date : Tue, 29 Aug 1995 13:18:39 EDT >From : UKRY13A@prodigy.com (MR JOSEPH L SNYDER) Subject: thalidomide THALIDOMIDE is now fda approved for a open access clinical trial on AIDS. AIDS patients are using for wasting or weight loss. According to recent CBS 60 minutes show THALIDOMIDE is being investigated in treatment of MS ,as well as other diseases. HAS ANYONE USED FOR ALS ? WHERE IS ALSA OR MDA ON THIS ISSUE ? WOULD LIKE COMMENTS FROM DOCTORS. JOE LOUISVILLE USA (10) ===== Some Thoughts on Lou Gehrig ========== Date : Sun, 20 Aug 1995 17:38:47 EDT >From : TASM76A@prodigy.com (MR TED HEINE) Subject: Some Thoughts on Lou Gehrig With the expectation that Cal Ripken will break Lou Gehrig's 2130 consecutive game record on September 6, I have become more interested in Gehrig. Carol and I watched *Pride of the Yankees* last month on AMC. It's a great movie. Last week I went to the library and reviewed *The New York Times* microfilm for 1939 and read about Gehrig's last season. He played only 8 games, the last one in Washington against the Senators on April 30 and was batting .143. May 2 in Detroit was the first game he missed since June 1, 1925, when he pinch hit before becoming the regular first baseman the next day. He did play two innings in an exhibition game against the Yankee farm team in Kansas City in June before flying to Rochester for evaluation at the Mayo Clinic. He flew back to New York a week later and on June 22 the Times reported, "Lou Gehrig, the Iron Horse whose baseball endurance record of 2130 consecutive games may never be broken, is suffering from a mild attack of infantile paralysis ..." The Mayo Clinic report was quoted: "After a careful and complete examination it was found that he is suffering from amyotrophic lateral sclerosis. This type illness involves the motor pathways and cells of the central nervous system and in lay terms is known as a form of chronic poliomyelitis (infantile paralysis)." On June 26 the Times had an article on ALS, headlined: "Gehrig Case is Expected to Spur Research Into Baffling Malady --Cause and Treatment are Vague Subjects--Not Form of Infantile Paralysis" Two quotes from the article: "At present there is no known cause." "There is no recognized medical treatment for the cause of the trouble." July 4 was "Lou Gehrig Appreciation Day" at Yankee Stadium where he made his valedictory "I am the luckiest man on the face of the earth" between games of a double header. August 8, 1995, an article in *The Newark Star-Ledger* by Dan Garcia, reported an interview with Cal Ripken, headlined: "Ripken pays Gehrig a visit--Says he's not as good a player as Yankee's Iron Horse" and describing Ripken's last game in Yankee Stadium before September 6. Some quotes: "Ripken paid tribute to the 'Iron Horse' by making a pregame visit to Monument Park beyond the Stadium's outfield fence, where Yankee legends are immortalized in plaques and monuments. But Ripken emphasized that he and Gehrig have only one thing in common: The Streak. Other than that, Ripken says he's just a 'good' player with uncommon desire to play. 'I'm not in the category of Lou Gehrig or Babe Ruth,' Ripken said. 'I'm just someone who has had a pretty good career. I'd like to say the streak is insignificant, but it's who I've become and what people associate me with. But I'll say again that I didn't set out to do this. I just set out to play baseball and I wanted to be in lineup every day, and suddenly, I'm in this position." The August 9 *Cleveland Plain Dealer* had a column (which I have mislaid) about the possibility of Ripken deliberately not breaking Gehrig's record, but skipping the game after 2129 to preserve the record and honor Gehrig and his memory. The writer's opinion was that this was not a good idea, and I agree. Ripken is Ripken and he should continue to play his game as long as he is able. Gehrig was 36 in June of 1939. Had ALS not stricken him, he would have most likely been able to play at least three more productive seasons. Those of us with ALS have a media opportunity to focus attention on our disease in the coming weeks. I plan to call this to the attention of my local TV station and suggest coverage. The point is: It's not just Lou Gehrig's disease, it's MY DISEASE too. Ted Heine, ALS patient in Waverly, Iowa === end of als 211 ===