=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #819 (15 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Phrenic Nerve pacing to assist breathing 2 .. Managing the Diagnosis of ALS 3 .. ALS Treatment with Extracranial Acupuncture 4 .. seeking contact with PALS 5 .. Genome database and ALS? 6 .. Seeking Dr. Goswami in India 7 .. re: stem cells 8 .. re: Phrenic Nerve (1) ===== Phrenic Nerve pacing to assist breathing ========== Date : Wed, 14 Mar 2001 22:32:24 -0800 >From : "Edward Anthony Oppenheimer, MD" Subject: Phrenic Nerve pacing to assist breathing Dear Maribeth Salge, Re: ALSD816 (13) RE: Phrenic Nerve This question of phrenic nerve pacing to assist breathing for PALS has come up a couple of times recently. Phrenic nerve pacing has been used in situations where the phrenic nerve is still functional, and can relay nerve impulses down the nerve to the muscles of the diaphragm. As you note, some people with high spinal cord injury have used this. One of the organizations involved in this states that: "The Breathing Pacemaker System is an implantable diaphragmatic/phrenic nerve stimulator that provides support for patients with chronic ventilatory insufficiency whose diaphragm, lungs, and phrenic nerves have residual function." My understanding is that people with ALS who develop motor neuron injury impairing the function of the respiratory muscles have injury to the phrenic nerve as it goes down from the spinal cord to the diaphragm. Thus artificial electrical impulses from a pacing device cannot transmit the stimulus impulses down the nerve; the phrenic nerve is no longer functioning. Therefore this is not an option for PALS. Thus, at present the two options that do work very well is either noninvasive ventilation or tracheostomy ventilation. All best wishes, E. A. Oppenheimer, MD Los Angeles, California > >Re: Phrenic Nerve >The phrenic nerve is the nerve that supplies the impulses for >contraction to the diaphragm. It is formed by spinal nerves C-3, 4, >and 5, hence the phrase "C-3, 4, and keep the diaphragm alive". >Diaphragmatic action is what allows us to move air in and out of the >lungs. > >I have heard of using an implantable electric stimulator for the >diaphragm in cases of high cervical spinal cord damage, but I don't >know how successful it has been, nor if there is any info on its use >with ALS patients. I wondered about this possibility for my father, >but was unable to learn much. > >Maribeth Salge, MA, PT, ATC, CSCS, RCEP > (2) ===== Managing the Diagnosis of ALS ========== >From : SBK613@aol.com Date : Wed, 14 Mar 2001 09:20:34 EST Subject: Managing the Diagnosis of ALS ALS of Michigan will present a three-part educational series for patients and familles: MANAGING THE DIAGNOSIS OF ALS Workshop 1: Wednesday, March 21, 2001 The Medical Aspects of ALS featuring Dr. John Wald from the University of Michigan Health System Workshop 2: Wednesday, March 28, 2001 - Mobility and Self Care featuring Patti Meier, OTR, Henry Ford Health Systems and Najoi Jreige, PT, Henry Ford Health System Workshop 3: Wednesday, April 4, 2001 - Coping Strategies with and for children and Families, & Nutritional Well-being, featuring Susan Liddy MSW, ACSW and Paty May RD, Henry Ford Health Systems These workshops are free of charge and open to anyone interested in attending. Location: Multiple Sclerosis Society 21311 Civic Center Dr. Southfield, Michigan Time: 6:30 -8:00 pm To register please call 800-882-5764 (3) ===== ALS Treatment with Extracranial Acupuncture ========== >From : Dr.Yoo@t-online.de (Dae Joon Yoo) Subject: ALS Treatment with Extracranial Acupuncture Date : Tue, 13 Mar 2001 17:54:59 +0100 First Actual Visible Evidence of Acupuncture Effect Observed on Patients with Amyotrophic Lateral Sclerosis ( ALS, Lou Gehrig`s Disease ) during the Treatment and with Lasting Results. - by Dr.med.D.J.Yoo - Dr. Yoo TCM Institut e.V., Reventlowstr. 45,22605 Hamburg,Germany Tel. 004940-8805040, Fax. 004940-8810120, Email. Dr.Yoo@t-online.de. Adopting the scalp acupuncture method of Jiao Shunfa (1971) I treated 45 ALS patients from 1998-1999 in Germany of different disease progression. Seven out of 45 patients showed significant improvement. In three of the seven I could observe direct simultaneous and involuntary movements of extremities upon manual stimulation of the acupuncture needle, which was inserted for that specific part of the body (Video). In those seven cases after series of acupuncture treatments the patients regained their body functions, such as writing, changing clothes and car driving. In these patients the regained body function lasted for more than four weeks and as maximum of one year. Conclusion: 1.. My observation could be seen as evidence of the direct effect of acupuncture. 2.. The extracranial acupuncture could be used as one of the adjuvant treatments on ALS patients. 3.. The result of my work encourages us to use acupuncture not only for the treatment of pain and othe clinical symptoms, but also for the treatment of diseases of the nervous system. (4) ===== seeking contact with PALS ========== >From : Rtph1@aol.com Date : Thu, 8 Mar 2001 15:06:55 EST Subject: Re: I was diagnosed with ALS 1 1/2 ago. I would like to hear from one with ALS. I fine that all my friends have backed away from me, I don't see them much any more. So it would be nice to write to someone. Ron RTPH1@aol.com (5) ===== Genome database and ALS? ========== Date : Mon, 12 Mar 2001 16:12:59 -0700 >From : Steve Hildebrand Subject: Genome database and ALS Is there any study where sequencing of chromosome 9 from an ALS patient has been compared to chromosome 9 from the human genome database? Steve Hildebrand hildebrand@lanl.gov Los Alamos National Laboratory Los Alamos, NM 87545 USA (6) ===== Seeking Dr. Goswami in India ========== >From : "narayan J" Subject: Request for information about alternative treatment(Dr.Goswami) Date : Thu, 15 Mar 2001 06:05:01 Hello , While browsing thru the net I came across your mailing list for the ALS community. Going thru one of the mails by rajiv Mathur(sub:Alternative Treatment for ALS/MND in India; Date: Mon, 25 May 1998) he talks about an alternative treatment by Dr Goswami in India. I urgently need more info on this...because my mother is also sufferning from ALS. If anyone can give me more info on how to contact the Mathurs or Dr Goswami, (if tou can send me a mail it will be heaven), I would highly appreciate it. The email address given in his, rajiv's, mail doesn't seem to be valid anymore. Thanks Narayan Jambotkar (abhayjam@hotmail.com) (7) ===== re: stem cells ========== Subject: New Scientist: Think again http://www.newscientist.com/dailynews/news.jsp?id=ns9999507 Source: New Scientist DATE : 13 March 2001 AUTHOR: Emma Young TITLE : LATEST NEWS Think again Transplanting fetal brain cells to treat Parkinson's disease remains an attractive therapy, as the trial producing "disastrous" results is heavily criticised. A US experiment which produced "disastrous" results after fetal cells were transplanted into the brains of Parkinson's disease sufferers has been severely criticised by international experts. Five of 20 patients were left with uncontrollable and untreatable jerky movements, which the US team says are caused by the new dopamine- producing cells going into overdrive. Previous trials of fetal cell transplants in Parkinson's sufferers in Europe have relieved symptoms in many patients without producing severe side effects. These new "absolutely devastating" results mean fetal transplant experiments have to go right back to the drawing board, said Paul Greene, a neurologist at Columbia University in New York, and one of the researchers. But leading European Parkinson's experts say the US experiment was seriously flawed. "This study unfortunately used a technique different to those used in previous primate and human studies," says Lucy Annett of Cambridge University, who has performed transplants in primates. "It had not been properly validated by animal studies." Anders Bjvrklund, a world leader in human fetal cell transplants at Lund University in Sweden, told New Scientist: "We are convinced this study has no implications for ongoing fetal transplant Parkinson's programmes." Sham Surgery Over 20 European scientists wrote to the journal Science seven years ago expressing their concern that the funding of a large trial for this technique ignored other, perhaps more promising, approaches. The trial, conducted by a team from Columbia University, involved transplanting fetal brain tissue into the brains of 20 long term Parkinson's sufferers. Controversially, 20 other patients received sham surgery. Some of the patients showed no improvement in symptoms. For others, the improvements were slight. But after one year, the patients that had showed the most improvement began to develop severe dyskenesia - uncontrollable jerky movements. These were more intense than their original symptoms. The Columbia team say the embryonic cells had gone into overdrive, and were producing too much dopamine. There is no way to turn these cells off. Technical Trouble Bjvrklund says other experiments using much higher volumes of fetal tissue have not produced these side effects. He says technical problems with the trial make it impossible to estimate how many of the dopamine-producing cells reached the vital part of the patients' brains. The surgical technique itself was unusual, he says. The injections were made through the frontal cortex, requiring a long needle. "There are concerns that the tissue may have spilled over into the frontal cortex and have unpredictable results," he says. Long term storage of the fetal tissue before transplant, and a lack of immuno-suppressive drugs, could also affect the results, he says. Bjvrklund says the study does not in any way dim hopes to use stem cells to cure Parkinson's. Stem cell experiments in mice have already reported good results. "Using stem cells will make it possible to carefully control the amounts of dopamine-producing tissue being transplanted," he says. More at: New England Journal of Medicine (vol 344, p 710) Science (vol 263, p 737) Stem cells preferable to xenotransplantation to treat Parkinsons's (20/02/01) Gene treatment for Parkinson's (27.10.00) Correspondence about this story should be directed to latestnews@newscientist.com 1700 GMT, 13 March 2001 Emma Young (8) ===== re: Phrenic Nerve ========== >From : "H.Nishio" Date : Thu, 8 Mar 2001 18:52:58 +0900 Subject: Re: Phrenic Nerve Hi PALS. This is a report of the title My name is Hitoshi Nishio with a vent in Japan. I don't know how many years this device is useful for us. I think it may useful for some periods, I mean ther are "Time-log" between the upper neuron in C2, C3 disfunctioned and the phrenic nerve disfunctioned. >Source: University Hospitals Of Cleveland (http://www.uhhs.com/) > >Date: Posted 3/1/2001 > >CLEVELAND -- Physicians at University Hospitals of Cleveland, working >with biomedical engineers at Case Western Reserve University, have >successfully developed a new breathing system that allows spinal cord >injured patients to breathe on their own, without a ventilator. >Thirty-six-year-old Tom Conlan of Medina, Ohio, has become the first >person in the world to receive this breakthrough breathing device, >which was surgically implanted in an outpatient procedure using >minimally invasive surgical techniques. Working through a laparascope, >surgeons placed electrodes in Conlan's diaphragm muscle. The electrodes, >attached to a small battery pack, stimulate the muscle and the phrenic >nerve to cause normal inhalation and exhalation. The contraction of the >diaphragm muscle accounts for 70% to 80% of the air that inflates the >lungs during quiet breathing. > >Conlan injured his spinal cord in a swimming accident in July, 1998. >Playing with his girlfriend's children, he leaped into an above-ground >pool, and severely injured his neck, damaging the upper part of his >spinal cord (at the C2 level). He was comatose for several weeks, >eventually waking up to find himself paralyzed, a quadriplegic dependent >on a ventilator to breathe. Conlan often compares himself to Christopher >Reeve, the actor who also injured the upper part of his spine when >thrown from a horse, and who has drawn international attention to spinal >cord injuries. > >Both Conlan and Reeve depend on the same kind of ventilator to >mechanically pump air into their lungs. They can only speak when the >machine is pumping air into the lungs and air is moving past the vocal >cords (the inspiration phase), a period of time that is less than two >seconds in duration. That is why speech is so halted and unnatural. > >When Conlan is off the ventilator and on the pacing device, he speaks >normally, while his lungs are exhaling air, giving him much more time >to speak and a more normal and expressive speech pattern. "I love that >I don't have to wait for the darn vent to give me a breath," says >Conlan. "With the pacing device, I can continue to talk just like a >normal person would. It is quite the difference, quite the difference." > >Conlan also appreciates not having tubing protruding from his throat >and attached to a large machine. He says this has allowed him to >participate in more aggressive physical therapy to rehabilitate his >muscles. > >This low-risk, cost-effective, outpatient diaphragm pacing system is a >significant improvement over previous attempts to electrically activate >the diaphragm. Over the past 25 years, surgeons have opened the chest >(thoracotomy) to put electrodes in direct contact with the phrenic >nerve, a risky procedure that requires a lengthy hospital stay, and >potentially difficult recovery. This procedure costs more than $100,000, >whereas the laparoscopic surgery and implantation of the new device >cost under $10,000. > >Researchers believe that 400 to 500 people each year who suffer spinal >cord injuries could benefit from the new pacing device. The long-term >hope is that injured patients would be implanted with the device >shortly after the spinal cord is damaged, before the diaphragm muscle >begins to atrophy. Although there are 10,000 new cases of spinal cord >injury each year, only a small percentage involve upper spinal fractures >and require long-term mechanical ventilation, like Tom Conlan and >Christopher Reeve. > >Raymond Onders, MD, a surgeon at University Hospitals of Cleveland >specializing in minimally invasive techniques and assistant professor >of surgery at CWRU, received FDA (Food and Drug Administration) and >IRB (Institutional Review Board) approval before implanting the device >in Tom Conlan last year. He will present the impressive results of this >surgery at a medical conference in April, 2001. > >Dr. Onders worked closely with a team of physicians and engineers, >including Tom Stellato, MD, chief of the division of general surgery >at University Hospitals of Cleveland; > >Anthony DiMarco, MD, pulmonologist at University Hospitals of Cleveland >and professor of medicine at CWRU; and J. Thomas Mortimer, PhD, professor >of biomedical engineering at CWRU, who has devoted more than 20 years >of research to electrically activating the nervous system. Some of the >components in the pacing device implanted in Tom Conlan were produced >by Mortimer's company, Axon Engineering Inc. of Garfield Heights, Ohio. >Other components were produced in the biomedical engineering department >at CWRU. > >The development and successful implantation of this pacing device was a >team effort by researchers and physicians at UHC, CWRU, MetroHealth >Medical Center and the VA Medical Center in Cleveland. Funding >assistance was provided by U.S Surgical Corporation, UHC, the VA, and >the FDA. > >------------------------- >Note: This story has been adapted from a news release issued by >University Hospitals Of Cleveland for journalists and other members of >the public. If you wish to quote from any part of this story, please >credit University Hospitals Of Cleveland as the original source. >You may also wish to include the following link in any citation: >http://www.sciencedaily.com/releases/2001/03/010301072206.htm ************************* Hitoshi Nishio My e-mail Web http://www.horae.dti.ne.jp/~hnals/ALSweb/ http://www.horae.dti.ne.jp/~hnals/M2K/ === end of alsd 819 ===