=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #823 (20 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. re: Nasal Ventilation vs. Trach (ALSD817) 2 .. re: Alternative Treatments (ALSD820) 3 .. re: ALS Treatment with Extracranial Acupuncture (ALSD819) 4 .. Riluzole and hair loss 5 .. re: Problems at home 6 .. re: Dry Scalp (ALSD821) 7 .. re: Dry Scalp (ALSD821) 8 .. re: Signing the Petition (ALSD821) 9 .. Mind controlled switch in school use 10 . re: Professor vs. homeopathic (ALSD811) (1) ===== re: Nasal Ventilation vs. Trach (ALSD817) ========== >From : "Noah Lechtzin" Subject: Re: ALS Digest Date : Sun, 18 Mar 2001 13:08:45 -0500 We are writing to clarify comments published in the ALS Digest, made in response to a letter we wrote in the New England Journal of Medicine. Unfortunately, the writer missed the intent of our letter. However, in doing so he highlighted many of the points that the case illustrated. Our letter was meant to draw attention to the fact that BiPap equipment failures (not electrical power failure) can be disastrous and that it is crucial for patients to have an emergency backup plan such as the availability of ambu bags and caregivers who can use them. These contingency plans become more important as ALS progresses and patients become more dependent on ventilatory support. This problem is not commonly recognized and has not received any attention in the medical literature. That is why it was printed in the New England Journal of Medicine. The patient from Texas fortunately had already received this message and is "never more than 10 feet from two ambu bags". It is not our medical practice nor is it suggested by our letter that patients who are doing well on non-invasive ventilation (NIV) should undergo tracheostomy. It is important to realize that most patients with ALS will eventually develop bulbar disease that prevents effective use of NIV. Therefore, we do discuss tracheostomy with all patients as the disease progresses and inform them that if they require 24-hour ventilatory support and begin to develop difficulty with secretions that tracheostomy may be beneficial. We are strong proponents of NIV and are committed to investigating pulmonary care of ALS patients and providing pulmonary care for patients with ALS. We prescribe BiPap frequently and many of our patients do very well with NIV. Very few patients choose to undergo tracheostomy after thorough discussion of the issues with their caregivers and families. We completely agree with the patient who responded to our letter in that there is a great deal of misinformation and a lack of knowledge concerning respiratory care for patients with ALS. NIV appears to be the most effective treatment available for ALS and we need to devote more energy to studying and refining respiratory care for ALS. It is unfortunate that the patient from Texas did not seem to read our letter with an open mind, and clearly did not understand our message. Our point was not to recommend tracheostomy, but rather to indicate that patients dependent on NIV need to be aware of potential equipment malfunctions and need to have emergency plans in place. We have modified our clinic practice as a result of this episode and wrote to the New England Journal to disseminate our experience to other health care professionals who may care for patients with ALS. We believe that the patient from Texas is in agreement with us on many aspects of respiratory care. We urge people who read the medical literature to read it carefully and with an open mind. Noah Lechtzin, Lora Clawson, Charles Wiener Noah Lechtzin, M.D. Division of Pulmonary/Critical Medicine Johns Hopkins University (410)955-3467 (2) ===== re: Alternative Treatments (ALSD 820) ========== >From : Wisampson@cs.com Date : Mon, 19 Mar 2001 03:08:45 EST Subject: Re: ALSD820 Re: ALS 820 entry by B Windham None of the references or labs listed by Windham offers any cure, amelioration, or effective treatment for ALS. Irina is best advised to follow the advice of the professor - a scientific physician - rather than the homeopath. Homeopathy, a philosophy, not a treatment, has not been demonstrated to be effective for any disorder or for maintenance of health. Claims for effectiveness in medical literature have been shown to be erroneous or misrepresented. W Sampson (3) ===== re: ALS Treatment with Extracranial Acupuncture (ALSD 819) ========== >From : Wisampson@cs.com Date : Mon, 19 Mar 2001 03:08:52 EST Subject: Re: >First Actual Visible Evidence of Acupuncture Effect Observed on Patients >with Amyotrophic Lateral Sclerosis. Most PALS will regard the acupuncture claim as untrue, appropriately. Most recent arrivals to the group will also not believe it, appropriately. Believers here will continue to object to realistic appropriate views. WSampson MD (4) ===== Riluzole and hair loss ========== Date : Sun, 18 Mar 2001 Subject: Riluzole and hair loss >From : "Genevieve Kierans" I began taking Riluzole in Spring 1998, when I was diagnosed with ALS. Since that time I have lost two thirds of my hair. I had always had very long, extremely thick hair. Now it is too thin even to braid. I feel that Riluzole might be responsible. Anyone else experienced this. Genevieve Kierans gkierans@attcanada.ca (5) ===== re: Problems at home ========== >From : RickvdH@aol.com Date : Sun, 18 Mar 2001 Subject: Problematic Caregivers Dear Friend - I am sorry to learn of your distress due to the troublesome caregivers. In the midst of your crisis, I hope that these few thoughts/suggestions might provide some small measure of relief. 1) negotiate with them. Care giving isn't hard due to any one individual task - its hard due to the fact that it is ever-present - no relief - no time off. [You don't need to tell me that ALS gives no time off - but your issue here is with your caregiver - not with your ALS] Recognize that it is hard for them too. Find respite time for them. For example - tell him/her/them that you recognize thier challenge. Negotiate time off for them. Like have them stock you up on attention and what you need - and then tell them to go take a bubble bath in a hot steamy bathroom for 30 minutes - you will do your damndest not to call or need anything so that they can have 100% time off. Even a 30 minute 'vacation' can be a real relief if they are working this program with you. Next, get more time off for the caregiver. Contact friends, family, church, old friends from work - anyone - and get them to come visit so your caretaker can get time off... a nap....an evening out .... an afternoon .... anything....but YOU take the responsiblility to find ways for your caregiver to get a break. If none of these works - contact your County Volunteer Services Coordinator - if you don't find a phone listing - just call the County switchboard and ask to be directed. There has been a federal initiative in recent years to have every County have some agency in charge of coordinating willing volunteers with those who have needs - your family HAS NEEDS. Get someone to sit with you so that your caregivers can get relief. Not all stories have 'happily ever after' endings' - but hopefully when you try to meet their real needs as best you can...then they will be able to respond by being less resentful and more responsive to your needs. Finally, if indeed your ALS is advanced, consider the help you might receive from Hospice. You are eligible for services if you have a prognosis of 6 months or less. Hospice can provide volunteers for caregiver relief. I have experienced hospice care where there were volunteers everyday of the week for several hours per day. Don't worry about getting on hospice 'too early' Get the help you need now to get things stabilized - if your health plateaus - you can be taken off the service for a period of time and then begin again as your needs increase. The biggest problem in hospice care is that too many people refuse to ask for it until the very last days.... 6 months is a long time - we should all use all of it that is available to us. I hope that these thoughts are helpful. You need to open some new lines of support and connection - for you - and for your caregivers. PS - if you have the money - there are caregivers from overseas who will work for housing, food and low wages - perhaps you could look for a reference to such a group....it can be life-changing for families who are overwhelmed. God Bless....and good luck ---Rick (6) ===== re: Dry Scalp (ALSD 821) ========== >From : MaryV12@webtv.net (Mary Valliere) Date : Sun, 18 Mar 2001 Subject: Re: Moore family.........our PALS uses T GEL shampoo and scalpicin. (7) ===== re: dry Scalp (ALSD 821) ========== >From : "Mark Woods" Subject: RE: Date : Mon, 19 Mar 2001 Aint it just satanic that the people who cant scratch are most likely to get the itchy's? Anyway, I've been diagnosed w/ sebarihic dermititis and found a few tricks to keeeping my scalp itch-free. 1-waterwaterwater 2-nizoral cream/shampoo 3-desonide cream 4-scrubbin the heck outv my scalp w/ a lil bristly comb during showers Now I'm itch free! God bless, m ps. escuse my typing, im gettin used to a dvrak keyboard... (8) ===== re: Signing the Petition (ALSD 821) ========== >From : "Loris Buccola" Subject: Re: Date : Sun, 18 Mar 2001 Regarding the post today, attempting to shame those who have chosen not to sign the petition on stem cell research: One person's enthusiasm may not be another's. Please be tolerant of different approaches and sensitivities to this complex and difficult issue of a cure for ALS. Loris (9) ===== Mind controlled switch in school use ========== Date : Sun, 7 Jan 2001 >From : Carl Brahe Subject: Mind controlled switch in school use - newspaper article To : DDFIND-L@VM.SC.EDU Video available on request. Short clips and articles at www.mctos.com Mind Control: Electronic device may give the disabled new powers By Terry Webster LAS VEGAS SUN Student Heather Bertolozzi races a toy fire red rescue car with bright flashing lights and blaring sirens. "Turn it off," her mother says. "OK, now turn it on." What might be a typical play session between mother and daughter was actually a demonstration of the power of technology. A new device is allowing the 19-year-old to play with a toy for the first time. Bertolozzi, who has cerebral palsy, repeatedly starts and stops the car on command without using her hands or feet, turning the car on and off with an electronic device attached to her forehead. Bertolozzi is a student at John F. Miller School, a special education school with a staff that works with some of the most severely disabled students in the Clark County School District. Talking, playing with toys or hugging their parents are all things these children don't take for granted. Many can't speak or control their muscles well enough to raise their arms. Those obstacles aren't stopping speech pathologist Dorothy Yeager. She's using a new high tech device that might provide the children with a new means to communicate and learn. Ultimately, it may be able to test the students' intelligence levels. "It's our job to learn what they understand, how they understand, and to provide them with the opportunity to do it." Yeager said. According to the manufacturer, the device, called Mind Controlled Tool Operating System, is a switch activated by eye or muscle movement transferred through a receiver attached to the forehead. The manufacturer also claims the switch also can measure thought process. The switch is used to activate a sound or a light to signal yes or no answers to questions, as well as to operate electrical devices like light switches, remote controls, computers and motorized toys. "In Heather's case, she can understand when you tell her to reach for something." Her mother Belinda Bertolozzi, said. "But it may take her five minutes to do it, because she has to concentrate so hard. This lets her do things without using her muscles." At Miller School, the use of the switch is still "in the experimental stages,' Yeager said. But the results, so far, are impressive, she said. For example, a student who teachers say has never made a sound began loudly vocalizing after her realized he was operating the toy car. "The children are able to do something for themselves, instead of having someone else do it for them," Yeager said. Seventeen students at the school have successfully used the switch, and it is being tested on more. Yeager estimates that at least 60 of the school's 119 students are good candidates to use the switch. Teacher Lisa Smith said it will give the students what they deserve: the chance to learn and develop. "This is an educational setting," she said. "It's not glorified baby sitting, as some people think. We are helping to teach students daily living skills and as a result are helping the parents to keep their children." And while there are other switches that allow children to operate things, many require a degree of muscle movement that is tiring for them, she said. The switch was introduced to the school by Carl Brahe, 48, a psychotherapist from Bailey, Colo. He became a distributor for the switches after using one while caring for a friend with Lou Gehrig's Disease. Before dying from the disease in 1999, Brahe's friend, Denver real estate developer John Andrews, was able to communicate by using the switch. "He was completely aware, but locked in a body that didn't allow him to communicate," Brahe said. A system attached to the switch changed that. "It was amazing," Brahe said. "We were able to ask him yes and no questions. For a yes, he would make it beep. For a no, he would keep it quiet." After learning about the John F. Miller School students at a trade show, Brahe donated a switch to the school. He visited last spring for a trial run. "As the technology continues to develop, I believe these people will force us to take a long look at what we think of as consciousness and intelligence," he said. "When I saw what these children could do, all I could do was sit on the floor and cry. They are incredible, yet mostly ignored and forgotten." Terry Webster cover education for the Sun. She can be reached at (702) 259-40091 or by email at terry@lasvegassun.com (10) ===== re: Professor vs. homeopathic (ALSD 811) ========== Date : Sat, 03 Mar 2001 >From : RobertWReid Subject: Herbs and Vitamins Dear Amitay, Please continue to take your vitamins and herbs. Sometimes people mean well by telling you to just take a prescribed medication however their knowledge of the disease is not sufficient. My husband was diagnosed with this in 1993. He is on a few drugs and lots of herbs and vitamins. He does not take rilutek. He tried that when it came out and it did not help him. He does however take baclofen and zanaflex for spasticity. He takes clonzapen for jaw pain. You will find that Massachusetts General Hospital in Massachusetts is doing a study on creatine. However quite a few ALS patients have already been taking creatine well before that with good results. My husband included. I take my husband to Mass General at least twice a year to see his specialists. The doctors have also found that vitamins C, E, Co Q10, B-complex and so on do help. My husband takes 200 mg of CoQ10 through the day. His vitamin C is 500 mg twice a day. Vitamin E, 400 mg twice a day. Also when you buy vitamin E makes sure that it says d-alpha on the bottle and not dl-alpha. d-alpa is natural vitamin E. There is a book, The Brain Wellness , that has been out for a couple of years. It is the only one that we know of that has been written by doctors and actually gives advice on ALS. I got this book in a health food store. I do not know where you are, but if there are support group meetings that you can attend, by all means go! ALS meetings and MDA meetings also. They provide a wealth of information and you also can talk over your problems. Have your wife go with you, if she will. My husband was not willing at first and there are times now that we don't always make the meetings, but when we go, we always learn something. You may have more than one ALS support group meeting in you area and you might find that they meet on different days. Go to all of them if you wish. I am not one that can accept no as an answer. I did not like what the first neurologist told us. There were no meds, no vitamins. We went for other opinions. One of which is a holistic doctor. He is also a chiropractor and a very well educated man. Try to get the book, your library probably will carry it. If not ask them if they can get it for you. Always keep researching and questioning. I am sorry that your professor is taking that outlook on ALS. Does he know how expensive rilutek is? $700.00 to $800.00 dollars a month for a patient? I personally think that it is outrageous that the pharmaceutical companies would charge that for patients that are already financially strapped. I believe that rilutek is helping some ALS patients, but you can take that and all the other stuff too. Our prayers are with you and your loved ones. Maryann & Bob === end of alsd 823 ===