=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #813 (25 February 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Incidence of ALS in Italy 2 .. ALS and Glutamate findings from Italian researchers 3 .. ALS or Adrenal insufficiency? 4 .. mono-ALS ? 5 .. Intranasal (IGF-1) or Myotrophin in the news 6 .. Traveling with Bi-PAP 7 .. re: Topiramate 8 .. EZ keys 9 .. Robarts Institute 10 . Communication Devices 11 . Dean Kraft 12 . re: wet cell battery 13 . re: books on CD 14 . Kelly Air Force Base Update 15 . "Classical cases of mercury poisoning" 16 . So Near, yet So Far Away (1) ===== Incidence of ALS in Italy ========== >From : Dasroster@aol.com Date : Sun, 25 Feb 2001 17:50:03 EST Subject: Incidence of ALS in Italy Incidence of ALS in Italy: Evidence for a uniform frequency in Western countries. Piemonte and Valle d'Aosta Register for Amyotrophic Lateral Sclerosis (PARALS). [Record supplied by publisher] OBJECTIVE: To determine the incidence of ALS in two regions of Northwestern Italy, utilizing a prospective design. METHODS: The study was performed in Piemonte and Valle d'Aosta (4,418,503 inhabitants) during the period 1995 to 1996. All neurologic departments in the two regions were involved in the study and prospectively collected and followed up ALS cases. Other secondary sources of information were used in order to ensure complete case ascertainment. ALS diagnosis was based on El Escorial criteria. Although all patients with motor neuron disease were enrolled in the follow-up, only probable and definite cases are included in the study. RESULTS: During the study period, 221 cases of ALS were found (120 men and 101 women), corresponding to a mean annual crude incidence rate of 2.5/100,000 population (95% CI 2.2 to 2.9). The rate was higher for men (2.9) than for women (2.3), and increased with age to a peak in the 75 to 79 age group among men and to the 70 to 74 age group among women. CONCLUSIONS: Comparing these data to those of epidemiologic studies with a similar prospective design, the incidence rates are similar, despite the large differences in terms of genetics, environment, and socioeconomic background. This finding points to diffuse environmental or genetic factors rather than to a specific exogenous toxin in the pathogenesis of ALS. PMID: 11160962 (2) ===== ALS and Glutamate findings from Italian researchers ========== >From : Dasroster@aol.com Date : Sun, 25 Feb 2001 17:04:52 EST Subject: ALS and Glutamate findings from Italian researchers Decreased platelet glutamate uptake in patients with amyotrophic lateral sclerosis. Ferrarese C, Sala G, Riva R, Begni B, Zoia C, Tremolizzo L, Galimberti G, Millul A, Bastone A, Mennini T, Balzarini C, Frattola L, Beghi E Department of Neurosciences and Biomedical Technologies (Drs. Ferrarese, Sala, Riva, Begni, Zoia, Tremolizzo, Galimberti, Millul, Frattola, and Beghi), University of Milano-Bicocca, Ospedale San Gerardo, Monza. [Record supplied by publisher] Decreased glutamate uptake and a loss of the astrocytic glutamate transporter EAAT2 (GLT-1) have been shown in spinal cord and motor cortex of patients with ALS. Because platelets express the three major glutamate transporter subtypes, including GLT-1, and possess a high-affinity glutamate uptake, the authors investigated glutamate uptake in platelets from patients with ALS and controls. A 43% reduction of high-affinity glutamate uptake rate (p < 0.0001) was observed in patients with ALS compared with normal controls and chronic neurologic disorder patients, suggesting a systemic impairment of glutamate uptake in ALS. PMID: 11160972 (3) ===== ALS or Adrenal insufficiency? from Portugal ========== >From : Dasroster@aol.com Date : Sun, 25 Feb 2001 16:44:32 EST Subject: ALS or Adrenal insufficiency? from Portugal Allgrove syndrome in adulthood. Bentes C, Santos-Bento M, de Sa J, de Lurdes Sales Luis M, de Carvalho M Department of Neurology, EMG Laboratory, Hospital de Santa Maria, Av. Prof. Egas Moniz, 1600, Lisboa, Portugal. [Record supplied by publisher] A 35-year-old man with a past history of achalasia developed progressive spastic tetraparesis, distal limb atrophy, dysarthria, and dysphagia. A clinical diagnosis of amyotrophic lateral sclerosis (ALS) was considered before neurophysiological investigation, which disclosed a polyneuropathy and a prolonged central conduction time. One year later, the patient developed dysautonomic symptoms. Following confirmation of adrenal insufficiency, a diagnosis of Allgrove syndrome was made. This is a rare case, and we emphasize its clinical similarity with ALS. Copyright 2001 John Wiley & Sons, Inc. PMID: 11180214 (4) ===== mono-ALS ? ========== >From : Daniel_A._Harkin@lnotes5.bankofny.com Date : Thu, 22 Feb 2001 08:55:39 -0500 Subject: Re: I was dx with mono-als (single limb\left arm) about 8 years ago. Have not gotten worse. Has anybody heard of this mono-als? (5) ===== Intranasal (IGF-1) or Myotrophin in the news. ========== >From : Dasroster@aol.com Date : Sat, 24 Feb 2001 01:50:07 EST Subject: Intranasal (IGF-1) or Myotrophin in the News Intranasal Insulin-Like Growth Factor May Be Effective in Treating Stroke FT. LAUDERDALE, FL (Reuters Health) Feb 16 - In an animal model, insulin- like growth factor (IGF-1), administered intranasally, reduces infarct volume and cerebral edema and significantly improves neurological deficits following induced cerebral ischemia, according to a presentation here at the 26th International Stroke Conference of the American Heart Association. "We have discovered a simple noninvasive method of bypassing the blood- brain barrier to deliver drugs to the central nervous system," Dr. William H. Frey II from Regions Hospital in St. Paul, Minnesota told Reuters Health. Therefore, all of the drugs developed by pharmaceutical companies that have been shelved because they could not be delivered to the brain now become potentially useful, he added. Dr. Frey and colleagues administered 75 mcg of IGF-1 intranasally to rats with induced middle cerebral artery occlusion (MCAO). During the 72-hour study, doses of IGF-1 were given shortly after the onset of MCAO and again 24 and 48 hours later. Compared with control animals, the animals treated with IGF-1 had a 71% decrease in corrected infarct volume and a 37% reduction in hemispheric swelling. In addition, the IGF-1-treated rats showed significant neurological improvement in postural reflex and flexor response tests. "With this delivery pathway we can deliver the drug within minutes directly into the central nervous system without going into the blood stream b thereby reducing systemic side effects," Dr. Frey told Reuters Health. "We feel that [intranasal administration] could be useful for a variety of neurological disorders," he said. "The potential of this method is amazing...the problem of central nervous disease is big, but the answer could be as simple as the nose on your face." (6) ===== Traveling with Bi-PAP ========== Date : Tue, 20 Feb 2001 16:34:47 -0800 >From : Tom Ellestad Subject: Traveling with Bi-PAP Fred Siwak asked about using a Respironics Bi-PAP while motoring in his van. You can get inverters (12V DC to 120V AC) at auto parts or preferably a RV equipment store. Depending on the power requirements, it should be possible to use it while traveling in a van/car. Tom E. (7) ===== re: Topiramate ========== Date : Tue, 20 Feb 2001 16:55:52 -0800 >From : Tom Ellestad Subject: Drug Info Jane Strauss asked about obtaining information on the drug Topiramate. Type the name in any search engine will usually give lots of leads. Also clicking the 'Usenet' box on the Yahoo search engine or go to deja.com will get you information on personal experiences - which I found quite valuable. Tom E. (8) ===== EZ Keys ========== >From : ToothFairy54@aol.com Date : Fri, 16 Feb 2001 23:44:36 EST Subject: If anyone tells you that EZ Keys is not compatible with Millenium Edition (Windows ME), they are WRONG. My brother, Gary Baker, has a new computer, which uses ME & EZ Keys together!! yea! Thank you Cindy & our ALS Chapter!! Linda L. Stancil (9) ===== Robarts Institute ========== >From : "Moreno Portioli" Subject: a question on als Date : Fri, 23 Feb 2001 11:53:41 +0100 I'm a PALS and am looking for contact with the Robarts Institute in London where researchers have identified a molecule that fuels production of human stem cells. Can anyone help me? Many thanks in advance and regards Moreno Portioli Milan Italy (10) ===== Communication Devices ========== >From : RivJW@aol.com Date : Sat, 24 Feb 2001 22:05:31 EST Subject: Communication Devices Hi Everyone, Jim was wondering if anyone has any info on a communication device that he maybe able to use. His speech is getting harder and harder to understand each day. It is getting all of us very frustrated. The problem is that he can't use either one of his hands. Also I know he misses using the computer very much for a while there I was copying off everything he might what to hear off the INTERNET and or e-mail and taking it in the other room and reading it to him. Finally our son and I found away to get him down the step that leads to where the computer is and now everyday Jim and I go down and see what we can do on the computer. But if he could find away to use the computer it would be nice for him because he can't do anything for himself anymore and also if he could do that it would give me more time to do other things that need to be done. Thanks for any info anyone may have, Jim & Kim (11) ===== Dean Kraft ========== Date : Thu, 22 Feb 2001 21:38:27 -0600 (CST) >From : beebopp@voyager.net Subject: Re: Everyone! I was wondering if anyone has ever experienced any of the treatments from Dean Kraft (energy healer in New York) or Edgar Cayce with his Wet Cell Treatment? I would love to hear from anyone who actually visited their clinics. Thank You! Holly Ritchie (12) ===== re: wet cell battery ========== >From : GLAUBERSCHLESING@aol.com Date : Thu, 22 Feb 2001 23:59:27 EST Subject: Re: Dear Kim, In response to your question about the wet cell battery I can tell you that my father has been using it for ten months now every day, I do not see any improvement but my father enjoys and in fact insists on using it. My opinion is that it can't hurt and is worth the try. Best wishes Sara Stern glauberschlesing@aol.com (13) ===== re: books on CD ========== >From : CheriNQ@aol.com Date : Mon, 19 Feb 2001 11:43:26 EST Subject: Re: Do all of you know about Books On Tape? It is a program that sends you a special tape recorder and you can order books on tape from a list of thousands! It is free and all you have to do is get your doc to sign a form for you. I am listing the site below. It is listed as being for blind and dyslexic but is also for anyone who is physically handicapped and cannot read "normally." The Web site is http://www.rfbd.org/ and has an application online. I hope this helps a lot of you! It's a wonderful program! Cher (14) ===== Kelly Air Force Base Update ========== >From : ESCohn@aol.com Date : Wed, 21 Feb 2001 13:55:47 EST Subject: ALSA Kelly Airforce Base Updates Kelly Airforce Base Update February 20, 2001 The following is an update on the investigation into ALS cases and their possible link to employment at Kelly Air Force Base in San Antonio, Texas. This information provides an update on the activities between The ALS Association, its South Texas Chapter, the United States Air Force and the San Antonio Metropolitan Health District: - As of February 15, 2001, The ALS Association South Texas chapter has provided 66 completed questionnaires with information about possible ALS cases with prior or current employment at Kelly AFB to officials at Brooks AFB. These people worked at Kelly AFB between 1938 and the present. Of the 66 cases reported to The ALS Association, San Antonio Metropolitan Health District and the USAF, 26 worked at Kelly from 1980 to 2000. The other 40 people worked at Kelly between 1938 and 1979. - The Air Force Institute for Environment, Safety and Occupational Health Risk Analysis (AFIERA) and the San Antonio Metropolitan Health District have joined together to investigate these concerns. Along with the Texas Department of Health (TDH) they form the core of an oversight body directing the epidemiologic investigation of Kelly AFB community health concerns, including, but not limited to, the investigation of possible cases of ALS and employment at Kelly AFB. - The 66 possible cases will be included in the case series of the study. Each person or a surviving family member will be asked to complete a questionnaire provided by the USAF. The ALS Association South Texas Chapter will help distribute the questionnaires. - AFIERA has designed a follow-on questionnaire to collect additional information that will assist in establishing the criteria for case definition for this study. AFIERA representatives will interview patients or a knowledgeable proxy to clarify and supplement the questionnaire information. - This study is funded from AFIERAs routine Defense Health Program (DHP) operating budget under its responsibility to perform AF epidemiologic investigations. - AFIERA has suggested that The ALS Association identify its own technical/epidemiological representative to attend working group meetings and to review the technical material provided during the course of this investigation. The ALS Association agrees with this suggestion and will enlist one or more persons to provide advice and consultation. - The ALS Association South Texas Chapter is working closely with the Air Force to field calls from ALS patients, family members and caregivers reporting on cases of disease and employment at Kelly AFB. To gather uniform information, ALSAs South Texas chapter continues to distribute a questionnaire to those who call their office in reference to this issue. The South Texas Chapter provides the completed questionnaires to the Air Force officials as they receive them. - Within the case series, AFIERA is validating Kelly AFB employment on each questionnaire they have received. - The Air Force Material Command, Office of Public Affairs has drafted a Public Affairs Plan with input from all involved organizations, including The ALS Association, to communicate to the media and general public the ongoing activities arising from the employee health issues at Kelly AFB and define the responsibilities of all the involved stakeholder organizations. - The ALS Association is working with the Air Force Public Affairs departments at Brooks AFB and Wright-Patterson AFB on all media inquiries relating to this issue. - Together, The ALS Association and Good Housekeeping (GH) magazine are writing a story about this issue for publication in July 2001. A representative from GH conducted a one-on-one interview Thursday (Feb. 8) with Lt. Col. Kenneth Cox (AFIERA) at Brooks AFB. The journalist is writing a story on Kelly AFB-related ALS health concerns and will include interviews with five San Antonio ALS patients and their families. - The Air Force has provided a web site that will include internal and external communication about the possible cases of ALS at Kelly AFB, along with other health concerns at the base. The web site address is www.denix.osd.mil, and is linked to The ALS Associations web site, www.alsa.org. - The ALS Association is involved in regular update meetings with AFIERA, SAMHD and TDH as this investigation progresses. The ALS Association is grateful to all those involved organizations for undertaking the inquiry into cases of ALS and its possible relation to employment at Kelly AFB. As further details of the epidemiologic investigation are available, they will be made public through The ALS Association, as well as published on the Air Forces Defense Environmental Network & Information Exchange (DENIX) Contact for Patients: Mary Lyon, Vice President, Patient Services (818) 880-9007 ext. 217 Contact for Media: Carol Levey, Media Relations Representative for ALSA 818) 880-9007 ext. 220 Glen Whiton, Director of Public Affairs, Kelly Air Force Base 210) 925-7951 If you or someone you know worked at Kelly AFB, and have a diagnosis of ALS, please contact Mary Klenke, Patient Services Coordinator, ALSA South Texas Chapter, at 210-733-5204. (15) ===== "Classical cases of mercury poisoning" ========== >From : KIPRS@aol.com Date : Fri, 16 Feb 2001 14:27:01 EST Subject: "Classical cases of mercury poisoning" I thought Wallace Sampson had left the list because he did not answer a message I posted back on January 18 (ALSD792). But I see he has a message in ALSD807 advising us "there is little to no evidence of heavy metal toxicity in ALS." Dr. Sampson, did you see that last message? It was the one in which I asked you to describe for us "the classical cases of mercury poisoning" which you said displayed symptoms that are different from ALS. I also asked for references -- just one will do if that's all you have. If you missed the message, let me know, and I will repost it. If you did not miss it, could you let us know whether you intend to reply. Thank you. Kip Sullivan (16) ===== So Near, yet So Far Away ========== >From : March001@aol.com Date : Sun, 25 Feb 2001 16:24:20 EST Subject: Re: I wil be speaking at Gurwin Jewish Geriatric Center in Commack, Suffolk County, NY on March 6 at 1 pm. The title is "So Near, yet So Far Away : my experiences of being disabled with ALS." To give the speech, I will be using a Visionkey eye gaze system and Dec Talk voice synthesizer. PALS, CALS, and interested people are welcome. Marc Herman === end of alsd 813 ===