=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #839 (16 April 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. re: alternative treatments 2 .. Florida Walk to D'feat ALS 3 .. re: getting enough to drink? (ALSD836) 4 .. ALSA Nevada Chapter Receives Grant 5 .. Inservice on Caring for ALS Patients 6 .. A Fatal Complication of Noninvasive Ventilation (1) ===== re: alternative treatments ========== >From : Wisampson@cs.com Date : Sun, 15 Apr 2001 Subject: Re: >B. Windham states: >I personally know the people involved in 3 cases cured or significantly >better and several cases better. The sites I offered are mostly medical >labs and clinics with a lot of credible medical study documentation on >the site, and some of the clinics have case histories on the site. Mr Windham is in error. I do not want to carry on another debate here as we had over mercury and amalgam fillings, faith healers and other anomalous method claims. The cases of cure or improvement he knows should be verified by neurologists. The cases are not to be believed until then. But internet sites alone are not scientific proofs. Readers will not find such cure and improvement claims in neurology texts, major journals and will not find reputable neurologists using or neurology professors teaching such methods. Most people on this list will recognize such aberrant claims. >or someone's personal opinion who has no credentials regarding the >issue that I am aware of. B.W. Most readers know (but I will repeat for new readers) that I am a board certified internist, retired clinical professor of medicine at Stanford, and former headed the oncology division at a Stanford major teaching hospital, and that I study aberrant and erroneous medical practices and schemes, and am editor-in-chief of the journal, The Scientific Review of Alternative Medicine. I still serve as expert witness for medical boards and attorneys general (never lost a case...including more than one involving homeopathy) >There are studies including double blind studies that I have seen that >document the effectiveness of some homeopathic treatments, Homeopathy is >widely used throughout the world, with millions of happy patients with >the results. I know several. There are positive double blind studies of homeopathy, but most are too erroneous for acceptance, and some are misrepresented. The journal editors missed the errors. Some of my analyses are published in the same journals that published the originals, others in other peer reviewed journals. Mr. W. and readers may gain access to some through the internet, others in medical libraries. >Were this not so, it would not be so widely used. Homeopathy is not >something I follow or profess to be an expert on, or can vouch for, but >the view of W. Sampson is extreme IMO. Homeopathy states principles that like cures like (it doesn't) and that decreasing amounts of the material are increasingly potent - even when no more is left (they say the "essence" or altered water remains - it doesn't.) It is a 200 year old holdover folkway method in France, Germany, and other European countries, but most physicians there know it does not work. It only seems to work through misinterpretation of events by the patient (and sometimes the physician) - mostly the natural course of illness. Also widely used are tiger parts and rhinoceros horn and bear gall bladders for male potency...those who take them know that they work. My views are those of standard, scientific medicine, not extreme at all. Perhaps a less extreme view for Mr W would be that homeopathy works... only a little bit. WSampson MD (2) ===== Florida Walk to D'feat ALS ========== >From : "Florida ALSA Patient Services" Subject: Florida Walk to D'feat ALS Date : Sun, 15 Apr 2001 Call for volunteers, PALS teams, and sponsors... The ALS Association Florida Chapter is organizing Walk to D'Feat ALS on the west and east coasts of Florida in October 2001. There are over 1500 persons living with ALS in Florida. We'd like to see a team walk for each PALS in our state. Walk with us to find a cure and to extend services to persons with Lou Gehrig's Disease throughout Florida. Contact ALSA Florida at 727-579-9511 to volunteer or to sponsor. Contact us to form a team to walk for your PALS. Send a team from your local area. The ALS Association Florida Chapter www.als-florida.org hwalker@als-florida.org (3) ===== re: getting enough to drink? (ALSD836) ========== >From : "Jan van Atten" Subject: Plastic bottle Date : Sat, 14 Apr 2001 Dear Peter, Though I can still use my hands (and legs), I have trouble with drinking thin liquids. I can't drink water. I use thickener to drink orange juice. When I go out, I always take one or two plastic half liter bottles with orange juice (pre-thickened at home). By keeping the bottle horizontal and carefully, slightly sqeezing it, I can 'drink' the liquid. Worth a try for emergencies? Good luck, Jan van Atten (4) ===== ALSA Nevada Chapter Receives Grant ========== >From : "Connie Bobo" Subject: Date : Sat, 14 Apr 2001 ALSA NEVADA CHAPTER RECEIVES GRANT Grant funding allows ALSA Nevada Chapter to assist ALS patients throughout the state of Nevada with augmentative communication aids as well as aids for daily living. Patients should contact: Kathleen McCartney, Patient Services Coordinator ALSANV@nevp.com The ALS Association Nevada Chapter 2101 South Jones Suite 120 Las Vegas, NV 89146 Office: 702-248-4507 Fax: 702-248-8070 ************************ Save this date: OCTOBER 27, 2001 and get in step with The ALS Association Nevada Chapter's WALK TO D'FEET ALS! ************************ (5) ===== Inservice on Caring for ALS Patients ========== >From : "Diane" Newsgroups: sci.med.diseases.als Subject : Inservice on Caring for ALS Patients Date : Sat, 14 Apr 2001 I just updated my ALS webpage http://home.att.net/~liveletdie5/ALS/home.html to include more info on dealing with constipation and an inservice on Caring for ALS Patients that I was recently asked to do for a local nursing home by the local MDA chapter. (I've worked with them in the past and so they know that I had been a nursing instructor.) I was more than happy to oblige and wanted to share the inservice material with anyone who might want to pass it on. I had to produce this rather quickly so didn't have time to ask for input from PALs and CALs who have had nursing home and home nursing care, but any suggestions for improvement or additions could be included in an update and would be appreciated! Diane (6) ===== A Fatal Complication of Noninvasive Ventilation ========== Date : Thu, 22 Feb 2001 >From : "Edward Anthony Oppenheimer, MD" Subject: A Fatal Complication of Noninvasive Ventilation Dear Ed and Steve, Thanks for sending me both the recent letter published in the NEJM, and also the Feb. 12th events discussed by Steve Fowler in his email below. The events of February 12th are very important particularly since this was not due to a power-supply failure. Most available data suggests that most often life threatening events using mechanical ventilation are not due to the ventilator equipment itself. I agree that it is essential to think through all the possible emergencies that can occur, and have a reliable plan for survival ! Well trained caregivers are essential. Part of the training is of course regular "fire drills": Practicing regularly what is to be done in case of each of the possible emergencies. If you are completely dependent on a ventilator, up to 24 hours per day, the risks are much greater, of course. Many people with neuromuscular diseases, particularly post-polio (and more recently ALS) have used noninvasive ventilation up to 24 hours per day. This is still a controversial subject. Some experts strongly support 24 hour NPPV, and other experts encourage using tracheostomy ventilation if 18-24 hour/day life support is needed, ...because the tracheostomy ventilator systems have been safer in the past. Each person's circumstances need to be carefully considered. We all know of tragic situations where something happened, and death occurred, due to a problem with the equipment or how it was being used. In these situations a back-up ventilator system needs to be readily available, so if there is any problem with the primary system (equipment or user problem) the secondary system can be immediately used. It should be, if possible, identical to the primary system so it requires no new learning. An effective resuscitator bag and interface (such as the Ambu bag) - that really works, is basic. There are many other details to put in place and practice. My own feeling is that I would want the emergency medical services (paramedics) to intubate me quickly, to establish good ventilation, if an emergency occurred and initial steps to re-establish successful noninvasive ventilation fail. Once I am stable and safe, noninvasive ventilation can be re-established without risking death or brain injury due to a period of anoxia. It is a terrifying experience for everyone when a near death episode occurs. The letter in the NEJM from the group at Johns Hopkins is an important strong reminder to all of us to be more vigilant. And, to review the options carefully. If I am using 24 hour life support ventilation (noninvasive or tracheostomy) I need to do everything possible to be prepared for emergencies, including community power failures, and gaps in caregiver expertise. Warm regards, Tony Oppenheimer Edward Anthony Oppenheimer, MD, FCCP Pulmonary Medicine, Los Angeles > >http://www.lougehrigsdisease.net/als_news/010129death_spurs_family_ > to_raise_als_.htm > >[Correspondence] To the Editor: > >A Fatal Complication of Noninvasive Ventilation > >The New England Journal of Medicine -- February 15, 2001 -- Vol. 344, >No. 7 > >Noninvasive positive-pressure ventilation is widely used in patients >with chronic respiratory failure due to neuromuscular diseases such as >amyotrophic lateral sclerosis. (1) Noninvasive positive-pressure >ventilation can be used intermittently, the equipment is portable, and >ventilation does not interfere with eating and speaking. It is considered >safe, and most problems that occur are related to the fit of the mask and >the risk of aspiration pneumonitis. (2) We describe a complication we >have not previously seen reported. > >The patient was a previously healthy 53-year-old man with amyotrophic >lateral sclerosis who was started on nocturnal noninvasive >positive-pressure ventilation (inspiratory pressure, 10 cm of water; >expiratory pressure, 2 cm of water). He tolerated this well and decided >that he did not want invasive mechanical ventilation in the future. The >patient's disease progressed, but he continued to work full-time and >used noninvasive positive-pressure ventilation all night and most of >the day. He obtained a second ventilator, which he kept at work. > >More than a year after noninvasive ventilation was initiated, the >patient's ventilating unit failed. The machine's error code indicated >that there had been a power-supply failure. Respiratory distress quickly >developed, and the patient was taken to a local hospital but died of >respiratory failure before ventilation could be reinstituted. > >This case demonstrates a problem that is likely to become more common >as increasing numbers of patients with chronic respiratory failure use >noninvasive positive-pressure ventilation. It is important to realize >that technical failures of the machines in these cases can be >catastrophic. Patients and their caregivers should be counseled that >noninvasive positive-pressure ventilation is not a substitute for >tracheostomy and mechanical ventilation. Patients need to be made aware >of the consequences of ventilator failure. We recommend that our >patients consider making the transition to tracheostomy if they require >full-time ventilatory support. Although this event has not decreased >our use of noninvasive positive-pressure ventilation, we have begun to >teach caregivers how to provide bag-and-mask ventilation to patients >in the event of an emergency. >If the equipment is available, this simple technique may be lifesaving. > >Noah Lechtzin, M.D., M.H.S. >Charles M. Weiner, M.D. >Lora Clawson, M.S.N., C.R.N.P. >Johns Hopkins University School of Medicine >Baltimore, MD 21287 > >References: > >1. Aboussouan LS, Khan SU, Meeker DP, Stelmach K, Mitsumoto H. Effect of >noninvasive positive-pressure ventilation in amyotrophic lateral sclerosis. >Ann Intern Med 1997;127:450-3. >2. Hill NS. Noninvasive ventilation: does it work, for whom, and how? Am >Rev Respir Dis 1993;147:1050-5. > >-----Original Message----- > >From: elwhldns@ktc.com >Sent: Friday, July 10, 2001 >Subject: FWD: I was asked by the head of paramedics to submit report > >Below is a note I received from an ALS friend in Los Angeles. It is a >good example of how quickly an ALS patient can get in trouble, and the >problems that result when one is being cared for by someone who is not >completely familiar with the pulmonary protocol. Even though Steve >can talk, without air in his lungs, he was unable to direct the >caregiver. I have experienced this and it is highly frustrating. The >answer here is simply to have a number of ambu bags strategically >located throughout the house, and of course, the caregivers trained on >how to use them. They must be used before the patient passes out, >however, or he cannot hold the mouthpiece. As long as an ambu bag is >available, one can stay alive indefinitely. > >Regards, >Ed White Fredericksburg, TEXAS > > ---------------Original Message--------------- > >This is an account of the events of February 12, from my perspective. >Eighteen months of round the clock nasal ventilation has left my >sinuses in a shambles. At one o'clock in the morning of February 12, I >asked my nurse to spray Afrin into my right nostril in an attempt to >insure myself of a reasonably restful sleep. Unfortunately, as she >pulled the mask down to insert the spray my nose obstructed the mask's >opening creating a buildup of positive pressure that popped the >faceplate out of its groove. I was instantly too out of breath to >instruct the nurse to reinsert the edge of the faceplate back into its >groove. This is an exceedingly easy correction to make, requiring no >more than a few seconds. The nurse, however, was new, and had been >trained by others who had not experienced this problem. She panicked >when it became obvious that I couldn't breathe, and called 911 rather >than my primary caregiver, who could have easily instructed her on how >to repair the mask. While waiting for the paramedics my nurse tried to >put on the mask that I use at night but in her anxiety broke apart a >joint that had been taped. My problems were further exacerbated by her >failure to situate the nasal prongs into my nostrils as she tried to >help me breathe. When the paramedics arrived one of them took over her >task and made the same mistake, failing to be sure that the prongs >were in place. By this point I was in deep suffocation and was being >ignored by everyone under the presumption that I was breathing. I was >then, fortunately, taken to the ambulance. The good fortune sprang from >the absolute certainty that any more "treatment" would have, at the >very least, caused me considerable suffering and, at the most, killed >me. Before we could start for the hospital, Liz, my primary caregiver, >arrived and acquainted the paramedics with the fact, which I would have >corroborated if I had been allowed to speak, that I did not require >hospitalization. There was merely a mask problem, one that she could >easily correct if they would give her the chance. She also asked, if >they were intent on proceeding to the hospital, to at least elevate my >head so I wouldn't aspirate. They did this but lowered the gurney as >soon as she left the ambulance. This all begs the question of why a >nursing aide became the ultimate authority in this case and why my >viewpoint, which was by far the most informed of anyone at my home or >the hospital, was so systematically excluded. One closing observation, >I was required by law to wait for a respiratory therapist to accompany >me on the ambulance ride home. It turned out that the therapist was >sick, coughing and sneezing on me throughout the ride home. Nothing is >more dangerous to an ALS patient with severe respiratory complications >than being exposed in this manner. > >My Recommendations: - On February 12 a series of unfortunate, dangerous >and ultimately preventable events occurred. It is obvious that everyone >involved believed that their actions were taken in my best interests. >Yet the truth is that these actions put me at considerable risk. >Therefore it is my responsibility to institute a set of controls that >preclude this sort of failure happening again. I have done this. The >paramedics will be called only in the event of a true emergency - acute >respiratory failure, heart attack, etc.. Nonetheless, the paramedics, >assuming I am responsive should utilize a safeguard question. They >should ask, "Do you want to go to the emergency room?" If I answer no >they could then ask, "Do you need to be bagged until your primary >caregiver arrives with additional instructions?" This, along with the >protocol now in place at my home, should prevent future mishaps. > >Thank you for your efforts >Steve Fowler >ALS patient in Los Angeles, CA >City of Dreams > === end of alsd 839 ===