=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #815 (03 March 2001) == == == == ------ 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 == == 4700+ subscribers in 70+ countries. Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed. This newsletter is not intended to == == provide medical advice on individual health matters. == == Any such advice should be obtained personally from a == == physician. == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@met.fsu.edu (Bob Broedel) == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://www.glnicholas.com/ == == http://www.alslinks.com == == http://www.alssurvivalguide.com == == http://cc4144-a.ensch1.ov.nl.home.com/~digest == == http://health.oldeman.net == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Treatment of ALS - What is the next step? 2 .. What has changed with Rilutal? 3 .. No Virus found in ALS study 4 .. re: heel pain and hot bottom 5 .. re: Traveling with BiPAP 6 .. New Issue of "Brick by Brick" 7 .. Donation of my body upon death 8 .. Is it really ALS? 9 .. re: transplanted diaphragm? (ALSD812) 10 . re: Stephen Hawking's computer 11 . re: Dean Kraft 12 . ideology and medical practice 13 . ALS and minor league baseball (1) ===== Treatment of ALS - What is the next step? ========== >From : Dasroster@aol.com Date : Fri, 2 Mar 2001 Subject: Treatment of ALS--what is the next step? - Germany Treatment of amyotrophic lateral sclerosis--what is the next step? Ludolph AC Department of Neurology, University of Ulm, Steinhovelstrasse 9 89075 Ulm, Germany. albert.ludolph@medizin.uni-ulm.de [Medline record in process] Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease which was thought to be untreatable. However, recent evidence in both experimental animals and men indicates that antiglutamatergic strategies are the first to have an influence on its pathogenesis and slow down the disease process. Since the effect of drugs is still small, this progress cannot only be seen as a success of the present but must also be acknowledged as a basis for future developments. How will future studies be designed? They will have to take into account that the disease presumably has a long preclinical period and they will use a number of novel compounds and treatment strategies which have been shown to be effective in transgenic animal models. This also implies that we are likely to use a combination of therapies and we will try to treat patients early. The latter will be associated with the demand for a novel clinical attitude toward the diagnosis of the disease and the development of novel markers for both the preclinical period and the longitudinal course of the disease. PMID: 11200700 (2) ===== What has changed with Rilutek? ========== >From : Dasroster@aol.com Date : Fri, 2 Mar 2001 Subject: What has changed with Rilutek? What has changed with riluzole? Meininger V, Lacomblez L, Salachas F Federation de Neurologie Mazarin, Division Mazarin, Hopital de la Salpetriere, 47 boulevard de l'Hopital 75013 Paris, France. vincent.meininger@psl.ap-hop-paris.fr [Medline record in process] Riluzole, after two significant trials, was introduced as the first standard treatment of amyotrophic lateral clerosis (ALS) in the early 95'. After 5 years what has changed in the field of ALS? In the field of basic science, riluzole as an active drug has largely contributed to stimulate the research of the possible role of glutamate in the genesis of ALS. However, the apparent simplicity of the relation between the drug and its mechanisms has to modulated in the light of the negativity of other trials (gabapentin) and the display of other mechanisms of the disease and of the compound. Possible relation with other putative mechanisms of ALS, as oxydative stress or growth factors, could be (and probably are) also involved. In the field of its activity, riluzole has an impact on the survival rate which has been largely debated. Comparison with historical databases are supporting the results of the two initial trials. Other information have been published supporting the probable activity of the drug on the muscle strength decline, a controversial matter. They strengthen the initial data and give additional reasons to use riluzole as a standard treatment of patients. In the field of the daily care, riluzole provided a real and unique hope for ALS sufferers. Even if its activity is not as complete as patients would have expected, it provides a hope for slowing down the rate of evolution and abolishes the myth of "no hope, no cure" which was the leitmotiv of patients care until recently. We have to better define the mode of administration with regard to the clinical status of the patients (respiratory disorders, fatigue, stiffness). In the field of care givers, riluzole was one major factor which provided the basis for national and international collaborations either for therapeutic trials or for standard of care. It made possible large collaborative programs in and among many countries. We do hope that this impulse will continue and be stimulated by additional results both in the field of basic science and clinical research. PMID: 11200701 (3) ===== No Virus found in ALS study ========== >From : Dasroster@aol.com Date : Fri, 2 Mar 2001 Subject: No Virus found in ALS study from USA Absence of echovirus sequences in brain and spinal cord of amyotrophic lateral sclerosis patients. Walker MP, Schlaberg R, Hays AP, Bowser R, Lipkin WI Department of Neurology, University of California, Irvine 92697-4292, USA. [Medline record in process] The role of enteroviruses in pathogenesis of amyotrophic lateral sclerosis (ALS) is controversial. A recent study, based on reverse transcription- polymerase chain reaction (RT-PCR) analysis of spinal cord, reported identification of a novel echovirus in 15 of 17 French subjects with ALS and only 1 of 29 subjects with other neurologic diseases. We established a real-time RT-PCR method based on this novel echovirus sequence and used this method and that previously employed for analysis of the French subjects to determine the prevalence of echoviral sequences in spinal cord and motor cortex of sporadic ALS subjects from the United States. No echoviral sequences were found in 20 spinal cord and 10 motor cortex samples from autopsy-confirmed cases of ALS or 13 spinal cord and 5 motor cortex samples from subjects with no motor neuron disease. PMID: 11221802 (4) ===== re: heel pain and hot bottom ========== >From : "Maribeth Salge" Subject: Re: Date : Fri, 2 Mar 2001 Re: Heel Pain and Hot Bottom Both of these problems are likely to be due to poor pressure relief. When a person experiences a loss of mobility, any area that is in constant contact with a firm surface becomes irritated and sore. The answer to this problem is to change positions often. There are also cushions and heel guards available to assist in relieving pressure over bony areas. Most medical equipment suppliers stock these. Maribeth Salge, MA, PT, ATC, CSCS, RCEP (5) ===== re: Traveling with BiPAP ========== >From : "Kevin Duffy" Subject: Travelling with BiPap Date : Sat, 3 Mar 2001 For battery backup or for travelling with a BiPap you need only a Deep Cycle Marine Battery from most battery outlets. You should also purchase a battery charger for it and keep the battery charged even when not in use. And a DC Interface module, model #552097 from Respironics Inc, 1001 Murry Ridge Drive, Murrysville, Pa 15668-8550. This kit has all the necessary bits and pieces to hook the BiPap up to the battery. It also contains a fitting for the cigarette lighter in a car. Carmel Duffy (6) ===== New Issue of "Brick by Brick" ========== >From : "ALS March of Faces" Subject: New Issue of "Brick by Brick" is now Available! Date : Thu, 1 Mar 2001 "If I were any further behind, I wouldn't be born yet"...terry frank It's BIG! Visit our Homepage at http://march-of-faces.org and click on the "Brick by Brick" Newsletter Button Here's what you'll find in this month's issue: ALS AWARENESS: PALS ACROSS AMERICA - FAQs ALS AWARENESS & ADVOCACY AWARD WINNERS ANNOUNCED!! ALS NEWS, RESEARCH AND INFORMATION: BEST ONLINE RESOURCES FOR UP-TO-DATE ALS-RELATED NEWS BDNF NOT SHOWN EFFECTIVE IN ALS STEM CELL RESEARCH RACING AHEAD UMBILICAL CORD CELLS USED FOR STEM CELL RESEARCH $58.5 MILLION DONATION TO JOHNS HOPKINS FOR STEM CELL RESEARCH STUDY UNCOVERS MYSTERIOUS GLIAL CELLS ROLE ALS ADVOCACY: NEW MEDICARE POLICY EFFECTIVE JULY 1 ONLINE PETITION FOR BROAD GOVT FUNDING OF STEM CELL RESEARCH ONLINE PETITION TO AMEND MEDICARE HOMEBOUND RESTRICTION ALS FUNDRAISING AND EVENTS: PREPARE YOURSELF - MAY IS ALS AWARENESS RICH PISONE'S ROCKIN' ROUND the CLOCK for ALS COLUMNS & REGULAR FEATURES: Grab a Dart and Join Nina - "The View From Here" Bill Paying Nightmares - Caregiver's Corner Cincinnati Phenomenon - Whats Cookin'? Penguin Alert! - Jesse's Ravings from Down Yonder Inspiration from Rev. L Paul Fiedler - Rev's Ramblin's Assistive Tech - Let's Talk Glenn's picks ...Can Always Laugh The Banner Calendar - Where in the World Are You? (7) ===== Donation of my body upon death ========== >From : Tesseoharold@aol.com Date : Mon, 26 Feb 2001 Subject: Donation of my body upon death To: Any Research Institute I was diagnosed with Bulbar ALS in 1998 at the VA Hosp. Brentwood California. I am interested in donating my body to any Universaty, Institute, etc. that would be useful in their research. The location doesn't have to be in California, the only requirement is that they take care of any expences. I have very extensive medical records being kept by the VA, that I am sure that would be available to whoever receives my body. My only requirement is that the research is valuable to finding a cure for ALS, not just to train medical students. If any Institute is interested they can E-mail me at tesseoharold@AOL.com. Resp. yours H. Tesseo PS I am ambulatory, willing and able to travel to anywhere in the country if the institute wanted to do their own diagnosis. (8) ===== Is it really ALS? ========== Date : Mon, 26 Feb 2001 >From : barb huston Subject: Is it really ALS ? My husband has been diagnosed going on 8 years now with ALS. Although his diagnosis really didn't happen until he had to quit work. His disease started with him dropping things and tingling sensation in his hands, somewhat like carpal tunnel (?spelling). Then he couldn't hold onto things hardly at all and lost all strength in right hand. He is right handed so he had to learn how to work with the left. Anyways we go to the MDA clinic in Columbus, Ohio. We recently went and a doctor that hadn't seen my husband in a few years was shocked to find hubby still walking. Ya see my hubby is what they say not typical ALS. He is not affected in the legs, just the arms and the speech. He no longer has any use of his hands or arms should I say. His speech is somewhat hard to understand at times. But he is progressing very slowly. Thanks be to God. Anyways recently upon our visit to OSU's MDA clinic, the doctor we hadn't seem in awhile referred another neurologist to go and see my husband and I. He first introduced himself and then ask if he could review the case with us. After reviewing our 8 years with this horrible disease, he ask if we would be interested in taking part in allowing them to do some studies on my husband, for they hadn't really done anything in about 5 years. We of course said yes, well my hubby did. Now they are going to study him a little better, so far they have done several chest xrays, bloodwork, and a spinal tap. Next week they are going to do an MRI (multi-view), EMG, and and autonomic(?spelling). They said that they are hoping maybe they have misdiagnosed, but for us not to get to excited, that they may have to come back to us in 2 months and say sorry, but we tried. So we can only pray they come up with something not so terminal. They are going to study him for 2 diseases, that it could possibly be, I really cannot remember the exact names of the diseases, but one was to check for an inflammatory disorder, which may affect one the same way as ALS, but is treatable. The other they didn't really go into great detail with us on, because they said it is pretty unlikely. So I guess why I am writing to you all is to ask you to please pray for my husband and I will post later what they come up with. I hope I can report something helpful to all of you out there that are facing this horrible diagnosis of ALS. I pray for each and everyone of you affected with this and I will continue to for many days to come. May God keep you in his care and may your families be blessed by his holy presence. Barb (ALS patients wife) (9) ===== re: transplanted diaphragm? (ALSD812) ========== Date : Thu, 22 Feb 2001 >From : "Edward Anthony Oppenheimer, MD" Subject: Re: ALSD812 - transplanted diaphragm? Sheila, This may help with your question: The diaphragm is the major muscle for breathing. Chest wall (rib), abdominal and shoulder muscles can help breathing and effective cough. As ALS progresses motor neurons are injured so they cannot trigger function in the muscles to which they are connected. The muscles, without nerve stimulation do not function. Over time their is a loss of muscle, and contractures in the muscles, without nerve stimulation. Range of motion and other physical therapy can help to avoid contractures. Thus a diaphragm transplant would not be the solution, if it could technically be done, since the motor nerve function (that must be intact for the diaphragm to function) is where the injury is in ALS. Also, phrenic nerve pacing of the diaphragm requires some degree of motor nerve function too. These are the reasons why, as I understand it, you do not hear of either of these strategies for people with ALS. On the other hand, very good breathing assistive devices are available that can allow survival for years after respiratory muscle weakness occurs. Many PALS on this list can comment on the details of long-term mechanical ventilation, how to be sure it works properly and safely, so one can continue living and enjoying life. All best wishes, E. A. Oppenheimer, MD Pulmonary Medicine, Los Angeles (10) ===== re: Stephen Hawking's computer ========== >From : "Anders Sewerin Johansen" Newsgroups: sci.med.diseases.als Subject : Re: stephen hawkins computer. Question? Date : Thu, 8 Feb 2001 > Does anyone have any ideas on how the same sensor system, used by this > computer, can be set up to sound an alarm for an ALS pt. who is > paralyzed with only the use of one thumb? Any input is greatly > appreciated. Thanks. Hmm.... You have to be a little more specific. As I understand your question, you want to know if you can wire up something like this: thumb switch -> box -> communications software on computer -> external alarm Ie. connect a thumb-activated switch to a box, that has the ability to send keystrokes to several switch-activated systems, such as alarms, communications software, door activators, wheel-chair control systems. There are indeed several boxes around that allow for this. An alternative would be to use a switch directly connected to the computer with communications software, and use communications software that has an alarm function built in. You may want to check out our FAQ (work in progress) at www.secondguess.dk for more general information on communications solutions for ALS patients. Regards Anders S. Johansen SecondGuess (11) ===== re: Dean Kraft ========== >From : Babsed@aol.com Date : Sun, 25 Feb 2001 Subject: beebopp about dean kraft Please do not waste your money, I took my son to Dean Kraft for over a year and spent over $10,000. DON'T WASTE YOUR MONEY. He can't do anything for you but take your money which is the only thing that he and his wife care about and it has to be cash (12) ===== ideology and medical practice ========== Date : Fri, 23 Feb 2001 >From : Walter Subject: ideology and medical practice I cannot claim to take WSampson seriously, as he too obviously plays the role of chief ideologue for a standard medical approach, rejecting anything that goes beyond this limited approach, without seriously assessing it. I appreciate of course that he is no exception. Just a note on his recent statement on homeopathy: The effectiveness of homeopathy has indeed been proven - not by homeopaths themselves, but by independent researchers! The problem is not that homeopathy does not work, the problem is that it is not understood HOW it works. That alone is enough for the medical establishment to reject it. Homeopathy does indeed not solve ALL problems, but nor does standard medical practice. Homeopathy cannot alone successfully fight ALS, and nor can chemical medicines. Patients would be better helped if doctors focussed less on ideological debates and focussed more on what they are supposed to do: Help their patients, any way they can, if necessary even against established dogmas! (13) ===== ALS and minor league baseball ========== >From : "Mark Reiman" Subject: ALS and minor league baseball Date : Wed, 31 Jan 2001 If your ALSA chapter have been involved with a minor league baseball team in the last year or two, would you please drop me a note and tell me about it? In as brief a format as you'd like, I'd like to know (1) your ALSA chapter; (2) the name of the team involved and its minor league "level" (A, AA, AAA); (3) what your event consisted of; (4) was the purpose fund and awareness raising or primarily a "fun" event for pALS and their families; (5) how successful was the event, in your opinion? I am trying hard to get our local team, the Everett Aquasox, interested and involved. Your information would be a really big help. Thank you! Mark Reiman ALSA Evergreen Chapter Everett, WA === end of alsd 815 ===