=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #830 (31 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Delayed colonic transit and gastric emptying in ALS 2 .. ALS CANADA NEWS - March 29, 2001 3 .. re: Immune Institute 4 .. re: NIV vs. trach (ALSD817, ALSD823) 5 .. re: Topiramate 6 .. Neck support for an Australian PALS 7 .. re: Stephen Hawking's computer 8 .. re: Professor vs. homeopathic (ALSD811) 9 .. PALS Community Home 10 . Human Growth Hormone (HGH) (1) ===== Delayed colonic transit and gastric emptying in ALS ========== Date : Fri, 23 Mar 2001 >From : Will Hubben Subject: Delayed colonic transit and gastric emptying in amyotrophic : lateral sclerosis >From Linda Carlton: Noninvasive (13)C-octanoic acid breath test shows delayed gastric emptying in patients with amyotrophic lateral sclerosis. Digestion 1999 Nov-Dec;60(6):567-71 http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query_old?uid=10545728& form=6&db=m&Dopt=b Toepfer M, Folwaczny C, Lochmuller H, Schroeder M, Riepl RL, Pongratz D, Muller-Felber W Department of Gastroenterology, Friedrich Baur Institute, Klinikum Innenstadt, Ludwig Maximilian University, Munich, Germany. Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disorder characterized by progressive loss of motor neurons. However, ALS has been recognized to also involve non-motor systems. Subclinical involvement of the autonomic system in ALS has been described. The recently developed (13)C-octanoic acid breath test allows the noninvasive measurement of gastric emptying. With this new technique we investigated 18 patients with ALS and 14 healthy volunteers. None of the patients had diabetes mellitus or other disorders known to cause autonomic dysfunction. The participants received a solid standard test meal labeled with (13)C-octanoic acid. Breath samples were taken at 15-min intervals for 5 h and were analyzed for (13)CO(2) by isotope selective nondispersive infrared spectrometry. Gastric emptying peak time (t(peak)) and emptying half time (t(1/2)) were determined. All healthy volunteers displayed normal gastric emptying with a mean emptying t(1/2) of 138 +/- 34 (range 68-172) min. Gastric emptying was delayed (t(1/2) > 160 min) in 15 of 18 patients with ALS. Emptying t(1/2) in ALS patients was 218 +/- 48 (range 126-278) min (p < 0.001). These results are compatible with autonomic involvement in patients with ALS, causing delayed gastric emptying of solids and encouraging the theory that ALS is a multisystem disease rather than a disease of the motor neurons only. PMID: 10545728, UI: 20014876 ###### Delayed colonic transit times in amyotrophic lateral sclerosis assessed with radio-opaque markers. Eur J Med Res 1997 Nov 28;2(11):473-6 http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query_old?uid=9385117& form=6&db=m&Dopt=b Toepfer M, Schroeder M, Klauser A, Lochmuller H, Hirschmann M, Riepl RL, Pongratz D, Muller-Felber W Friedrich-Baur-Institut, Ludwig-Maximilians-University Munich, Ziemssenstr. 1, Munich D-80336, Germany. toepfer@fbs.med.uni-muenchen.de Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder, characterized by progressive loss of motor neurons. However, ALS has been recognized to involve several non-motor systems, subclinically. Cardiac and sudomotor autonomic involvement in ALS has been described. Recently, delayed gastric emptying was reported. The aim of this study was to assess colonic transit time in patients with ALS. Therefore, measurement of total and segmental colonic transit times using radio- opaque markers was performed in 14 patients with ALS and 14 healthy age-matched volunteers. Multiple-ingestion, single-radiograph technique was used. Segmental and colonic transit times were calculated from the number of retained markers. Nine of 14 patients with ALS showed markedly delayed colonic transit times if compared to healthy controls. Colonic transit in ALS patients was significantly delayed in the right and left colon; the rectosigmoid transit did not show major delay. The colonic transit times did not correlate with bulbar involvement, Norris score, walking disability or duration of the disease. In summary, colonic dysfunction in ALS may be a result of inactivity or inadequate fiber intake. However, it also may represent a gastrointestinal autonomic involvement due to nerval degeneration. Considering ALS as a multisystem disorder including the autonomic nervous system may have implications for research into pathogenesis and therapy of neurodegenerative disease. PMID: 9385117, UI: 98047425 ###### Will Hubben whubben@earthlink.net (2) ===== ALS CANADA NEWS - #6 - March 29, 2001 ========== >From : "Susan" Subject: ALS CANADA NEWS - #6 - March 29, 2001 Date : Thu, 29 Mar 2001 March 2001 Coast to Coast It's at the wire, but the March 2001 issue of COAST TO COAST is now available at our web site www.als.ca. It is in two pieces to make downloading easier! Key stories - Pictures and story from ELIZABETH'S CONCERT OF HOPE Announcing the new WALK TO D'FEET ALS project in Canada ALS Society Annual Meeting notice A feature on the work of Dr. John Roder, a Canadian ALS researcher and much, much more! ALS IN THE MEDIA 1.Watch for a documentary on the Vais family - the Rev'd Chris, Susan and Clare - on The National - CBC to be aired on Good Friday, April 13, 2001. We expect it to be on the main CBC network between 10:30 and 11:00 p.m. and on CBC Newsworld between 9:30 and 10:00 p.m. Chris Vais also publishes a newsletter - For Words; a journal of hope and healing - containing his reflections on living with ALS. Take a look at http://members.home.net/forwords/ 2. Dr Barry Smith has another article in the media, this time in the March 13th Medical Post. It can be viewed at www.medicalpost.com Dr. Smith is the former Dean of Medicine of Queen's University now in the latter stages of living with ALS. 3. A recent addition to the CBS Television line-up is a New York City cop drama called Big Apple. The story includes Homicide Detective Michael Mooneys emotional struggle to deal with his sisters battle with ALS. We understand that in the first episode there was a frank characterization of the difficulties faced by the sister battling ALS and the concerns of her family for her health, including ways to maintain her quality of life. The ALS Association (our sister organization in the USA) Greater New York Chapter has provided technical assistance to the show, which offers yet another opportunity to raise the publics awareness of ALS. Air Time: Thursdays, 10 p.m., on CBS (beginning March 28) Check local listings for correct time in your viewing area. ###### Susan Graham Walker Manager of Communications and Special Projects sgw@als.ca 800-267-4257 416-497-1256 fax 416-497-2267 ext 208 alscanada@als.ca www.als.ca 265 Yorkland Blvd., Suite 300, Toronto, Ontario M2J 1S5 (3) ===== re: Immune Institute ========== Date : Sun, 25 Mar 2001 Subject: Re: Immune Institute >From : "Prof. Garth L Nicolson" In Reply to the Question on the Immune Institute: (From the Institute for Molecular Medicine website, www.immed.org) New multicenter diagnosis and combination treatment program for ALS patients initiated at the Institute for Molecular Medicine, International Molecular Diagnostics, the Immune Institute. The Institute for Molecular Medicine, the Immune Institute and International Molecular Diagnostics, Inc. of Huntington Beach, CA have announced a new multicenter experimental study protocol involving combination treatment for ALS that is directed at viral and bacterial infections found at extremely high frequencies in ALS patients along with growth factors and immune modulators. The pilot study will be a randomized, two-arm, open label trial, in which eligible patients will be given antibiotics and antivirals, heavy metal chelation, immune system modulation, mesenchymal growth factors with or without hyperbaric oxygen. Laboratory tests will be administered before, during and after the trial to assess Natural Killer Cell function, presence of enteroviruses and Mycoplasma species (found at ~90% and ~85%, respectively in ALS patients), and other tests. Clinical tests will include nerve conduction velocity, EMG, muscle strength and quality of life (SF-36) and clinical signs and symptoms assessments. Amyotropic Lateral Sclerosis (ALS) is the most common of all progressive neurodegenerative disorders. The pathology of ALS stems from the loss of function in both the lower motor neurons (anterior horn cells in the spinal tract) and the upper motor neurons or the cortical spinal neurons. The diagnosis of ALS is dependent on the presence of both lower and upper motor neuron dysfunction in the absence of either; the diagnosis would be in doubt. The specific pathology involved is the focal accumulation of neurofilaments in proximal motor axons. There is also astroglial proliferation as seen in most neurodegenerative disorders. The loss of peripheral motor neurons in the brainstem and the spinal cord leads to muscle denervation and atrophy. Neuronal cell death in ALS is selective, with no structural abnormality seen in the entire sensory neurons, components of the brain involved in the cognitive process, and the regulatory mechanisms in the controlling of movement and coordination. There is also selectivity in the motor neurons, with some motor neurons not affected, such as motor neurons involved in ocular motility. Clinical manifestations of ALS vary depending on the extent of involvement of the lower or upper motor neuron. With greater involvement of the lower motor neuron the insidious development of asymmetric weakness most common distally in a limb. A history of cramping maybe present. Atrophy of the affected muscles lead to weakness. Fasciculation9s may be present due to twitching of the affected motor neurons early in the disease process. In the hands there is greater involvement of the extensor muscles. With greater involvement of the bulbar muscles early in the disease process the most common clinical manifestation is difficulty with chewing, swallowing and movements of the face and tongue. Early involvement of muscles of respiration may lead to death before the advancing of disease. Update: Our preliminary results indicate that the majority of patients improved their muscle strength tests from 20-50% after the end of the first segmentof treatment (8 weeks). Some clinical trial information, IRB forms, Patient Informed Consent Form, Lab Testing Form, etc. for your information. can be requested by email (All sent in Rich Text Format) If you are interested, you can contact our sister clinic, The Immune Institute, Director, Darryl See, M.D. (Tel: 714-842-1777, Nooshin, office mgr., tell her I sent you). Prof. Garth Nicolson The Institute for Molecular Medicine (website www.immed.org) (4) ===== re: NIV vs. trach (ALSD817, ALSD823) ========== >From : "The Moore's" Subject: NIV vs. TRACH Date : Sun, 25 Mar 2001 I have read the article in the NEJM by the authors at Johns Hopkins. Mr. White's critique of that article, and the authors' response. Even after reading the article again with an open mind, as the author suggests, I must conclude that I agree completely with Mr. White's comments. The article appropriately points out the need for contingency planning when a patient is on any type of ventilatory support. However, to go one step further and recommend that patients prematurely move to a trach as an extension of contigency planning is misleading and confusing. Equipment malfunction can occur whether NIV or trach ventilation is being used. The article leaves the impression that a trach is safer than non-invasive ventilation. Mr. White appropriately states that the authors have gone one step too far and used "an elephant gun on a rabbit". That comment correctly summarizes the article, which in my opinion contains misinformation, and should have been worded to emphasize contingency planning, not the conversion to a trach, unless the patient can no longer utilize nasal ventilation. Carolyn Moore LVN (5) ===== re: Topiramate ========== >From : "Donna Delano" Subject: Topiramate Date : Thu, 22 Mar 2001 I would like to thank everyone who sent letters and responded to my notes on Topiramate. My husband, Joe has decided after the fourth week of being on it that there were too many side effects to this drug. He experienced tongue numbing, which caused him to lose his appetite. Also Extreme weakness by afternoon. With this said, as most know a person with ALS cannot afford to lose their appetite. And ALS also produces weakness. Please be advised that Joe was also taking pain meds and muscle relaxants, Extra strength Vicodin three times a day and Valium once at night, also Baclefen four times a day. The Topiramate shows that there are drug interactions with those three meds. I am very happy for those that it is helping. And pray all goes well. If there is anything more I can help with let me know. Joe and Donna Delano (6) ===== Neck support for an Australian PALS ========== Date : Fri, 02 Mar 2001 >From : Bill Blackburn Subject: Neck support for an Australian PALS. We are sydney residents. Bill was diagnosed Nov 99 with arm onset ALS. He has a rigid neck brace only good for resting his neck, two soft neck supports which give insufficient support to his neck but permit eating and drinking and working. He is unstable if wearing one when standing or during assisted walking. He has tried an inflatable neck brace, but cannot eat in it and the velcro fasteners come off the rubber. What are others' experiences? He has torso weakness and leg weakness but is still working part time as an engineer. The weather here right now is hot and humid so this is an issue in choosing alternatives. The information we need in any recommendation is how to order by email/ website and how the brace fares in the situations described. Cost in Aust $ we can find out. phone nos and ordering details are desirable. Meg and Bill (7) ===== re: Stephen Hawking's computer ========== >From : "Dean Chioles" Newsgroups: sci.med.diseases.als Subject : Re: stephen hawkins computer. Question? Date : Fri, 16 Feb 2001 I use WORDSPLUS software which allows me to do everything on my laptop by clicking a single switch. It also has a alarm built in alarm that is activated by holding down the switch. God Bless, Dean Chioles Dean@dls.net Http://www.Shoptown.com/Dean (8) ===== re: professor vs. homeopathic (ALSD811) ========== >From : "Jatish Panji" Subject: ALS Date : Sat, 17 Mar 2001 Dear Irina, I am Jatish Panji from Mumbai India. My mother is suffering from ALS from last 3 years. She was advised to take Relutec by my Neurologist a year ago. She did not go for that drug because of the side effect profile. Interestingly I met one homoeopathic doctor who happens to be my wife's cousin. She was very upset to know about the disease and said we do have some medicines which may or may not cure the disease. She said that if we can't cure it then we can increase the lifespan of the patient by say 5 years. She told me all this because I told her that my neurologist said that mom does not have much time left. Mom started taking medicines and I am very happy to say that her progress of disease has almost stopped. Her upper limb which was partially affected when we started medicines say a year back has shown very negligible progress of spreading of ALS. Surprisingly her lower limb which was very badly affected showed some signs of regeneration of nerves. Regeneration is not possible at all in ALS but, I have seen it and our physiotherapist was stunned when she saw that. We then went for EMG of both lower and upper limbs and report suggested regeneration of nerves. It was like dream coming true for us. I am sure that homoeopathy does have medicines which can definately bring a ray of hope for the patient of ALS. Honestly speaking I was against trying these medicines before starting the treatment due to the fact that all Alopathy doctors including my neurologist were calling it nonsense but, now they have to believe it and reconsider their views on homoeopathy! Please feel free to write to me if you want more information on this subject. Hope for the best and have faith in god. -Jatish Panji. (9) ===== PALS Community Home ========== Date : Sun, 25 Mar 2001 >From : "Sally Krohn" Subject: PALS Community Home - The Nation's first Assisted Living Facility for persons with ALS is into it's third year of operation. Located in Northwest Wisconsin, the home-like facility provides care for up to 4 residents at a time. Staff are specifically trained to care for persons with ALS. We are hoping to build a new facility and are looking for potential grants or funds. All donations are tax-dedutible. Contact skrohn@discover-net.net for additional information. (10) ===== Human Growth Hormone (HGH) ========== >From : TLTERNET@aol.com Date : Mon, 26 Mar 2001 Subject: Human Growth Hormone (HGH) Has any had any experience with use of HGH to stop or cure ALS? I understand Dr. Sam Baxas of Switzerland has had great success. Can anyone confirm or deny this? He apparently also has office in Miami,Fl. === end of alsd 830 ===