=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #822 (19 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. help request 2 .. advice from a caregiver 3 .. naltrexone 4 .. re: Problems at home 5 .. On Root Canals and Bobcats 6 .. Items for Sale 7 .. re: HMO quality of care 8 .. re: Am I in the right place? (1) ===== help request ========== >From : t.m.mullen@att.net Subject: Re: Date : Sun, 18 Mar 2001 My husband Ken was diagnosed with ALS in Dec of 1999. He is 72 years of age. At this time he says he will not have a G-tube or a vent. I am a nurse with lots of experiences but none that include what to do to help some one as their breathing and swallowing become more difficult when they don't want treatment. Maybe some one who has had these experiences could give me some hints. Terry (2) ===== advice from a caregiver ========== >From : Dotereal@aol.com Date : Thu, 8 Mar 2001 Subject: Re: Just thought I'd write a bit as I think it helps to communicate with others who have gone and are going through the challenge of dealing with this terrible disease. My wife used to rely on this E-mail line to keep in touch with all of the recent ALS developments. She died on Christmas Eve as we were traveling to my sister's house for the Christmas holidays. We knew, because of her rapidly deteriorating condition, that it would be the last time my wife could go home to Texas to visit our families, but she and I both thought she would be able to handle the trip. She had no breathing complications and was checked by a pulmonary specialist just before we left. Her condition was severe, however, as she had a G-tube for feeding and could only move the thumb on her right hand for purposes of communicating on her Litewriter and computer. There are many important aspects to our struggle which I may write about later, including a direct connection between carbon monoxide poisoning and ALS, but I thought for now I would just offer some brief advice for family caregivers. For me it was very difficult because in addition to taking care of my wife, I had to take care of our two daughters, ages 5 and 2. There were days when I thought I simply could not continue, I suppose like a marathon runner "hitting the wall". Of course I did carry on with the help of my faith and family members who visited from Texas periodically. Each day I struggled to make life as normal as possible. We went to restaurants, the whole family went to our older daughter's soccer games, and we all went to church every Sunday -- we even went to a family reunion in Idaho and stopped off in Yellowstone and the Grand Tetons, complete with a month's supply of Osmolite to feed my wife. I am glad that we continued to live life to the fullest up until the very day my wife died, but I want to caution caregivers about a couple of things. First and foremost, do not be mislead into thinking this disease progresses in an orderly and predictable manner. IT DOES NOT. I watched my wife's apparently methodical decline and figured that I would have time to prepare for her death once the disease started to outwardly affect her breathing. I consequently concentrated on the huge task of making life normal for our family, expecting that when my wife's condition worsened to a certain point, I would have time to say those special goodbyes and tell her how fortunate I felt to have spent time with her on this earth. I told her I loved her everyday, but we both thought she had at least several years to live, even though she probably contracted ALS in the spring of 1997. Her death caught me completely by surprise. She was such a fighter and I suppose I was the one who was still in denial. So my advice is simple -- treat each day as if it is your loved one's last and don't wait to say all of the things that need to be said. I suppose that's good advice in general, but for caregivers who can get caught up in the sometimes overwhelming demands of the day, it is often hard advice to follow. Perhaps it would be a good idea to set aside the final five to ten minutes of each day to tell your loved one how special she or he is -- even if it's been a particularly trying day. I had purchased a special piece of jewelry for my wife with two entwined hearts. It was her Christmas present and I was going to write her a poem to go with it. Unfortunately I was literally a day short. Don't wait! If you're a caregiver, go give your loved one a hug as soon as you finish reading this. (3) ===== naltrexone ========== >From : "The Lauver's" Subject: naltrexone Date : Sun, 18 Mar 2001 My husband has ALS and he is 40 yrs. old. He has recently been prescribed naltrexone by his physician, (who practices alternative therapies), and began taking 1/4 tablet once a day. We are very interested in any feedback, positive or negative, on this drug being used to treat ALS. Thank You, Michelle Lauver (4) ===== re: Problems at home ========== >From : BristolStomp@aol.com Date : Sat, 17 Mar 2001 Subject: re: Problems At Home ~ Thank You My recent contribution to the ALSD generated an overwhelming number of private email responses. It'll take a month of Sundays to reply individually so, while I chip away at that iceberg, please accept my general thanks for your support, suggestions and encouragement. (5) ===== On Root Canals and Bobcats ========== >From : GEOTM@aol.com Date : Wed, 31 Jan 2001 Subject: On Root Canals and Bobcats Could ALS possibly be one disease, or is it a catch-all term for a set of similar symptoms in a progression of motor neuron death? How can a disease with a Guam form, a sporadic form, a familiar form, not to mention a bulbar form and a limb-onset form be one disease? What about the latitude in rate of progression in different individuals? What about its different manifestations in hitting different muscles to different extents in different individuals? ALS is considered in the class of rare diseases. Therefore it makes sense that, as some people speculate, it may have several factors as its cause. In other words, without the whole combination, you don't have ALS. And given that the whole combination is not likely to occur too frequently, ALS falls into that category of "rare." Not all people who smoke develop lung cancer. Not all people on high fat dairy diets have strokes or heart attacks. Not all people exposed to leprosy, hepatitis or even the common cold virus contract these diseases. Some trees only bend in a storm, some break. Those that break often have dead or diseased limbs. Disease may be caused by infestation of insects and parasites. Insects and parasites gain entrance by scrapes and scratches left by bobcats and bears - as signs of dominance, in the attempt to draw sap. In the human body, perhaps enough stressors combined eventually break down DNA. Okay, so not all root canals cause ALS. Not all bobcats cause tree disease. Could it be that, rather, dental incisions provide a path for disease to enter? Could it be that at the time of dental surgery some individuals have, say, echo-7 virus present in their mouths, some do not? (Keep in mind, dentists and oral surgeons may sterilize their tools, but they can't, or don't, sterilize your entire mouth.) Just as you could be exposed to AIDS through a kiss, and not contract it if there are no open sores in your mouth, could the ALS "virus" be present but unable to take hold until an incision is made? Could it be that a particular individual's immunity, if exposed to a particular virus, may be down at that particular time? Could it be that just as adrenal glands can become exhausted, immunity can become exhausted, and that laboring to eliminate high concentrations of toxins might exhaust the immunity system? Could mercury and other amalgams contribute to this exhaustion? Does the virus then gain ground and wreak havoc with DNA or RNA? Why don't we know the cause of ALS? Could it be that when a number of (varying) factors combine, there is no one simple test that tells all? Could it be that the laboratory and "scientific method" simply can't duplicate all the factors that lead to DNA breakdown resulting in motor neuron death? Then perhaps we shouldn't rely on scientific method. Those of us who have been afflicted or affected by ALS (care-givers, family, friends included) know it a travesty to hang a life on the want of the very limited paradigm of scientific method. Scientific method rarely proves "cause and effect." Most results only show a correspondence. So how come scientific method has become such a god? It is time to take anecdotal evidence a lot more seriously. I can't emphasize this enough. Let me repeat: It is time to take anecdotal evidence a hell of a lot more seriously. It is all we have! This disease devastates. We can't stop our searching, our probing based on someone else's limited paradigm. Scientific method may be widely accepted. So is Buddhism, Christianity, Islam, Judaism and Hinduism. Wide acceptance doesn't make for one solitary truth. Working in a dental office for twenty years and not seeing anyone with ALS says nothing. Since her last dental surgery - the one I call the culprit - the last dental work done before ALS was diagnosed, my mother with bulbar ALS no longer sees a dentist. Instead, her time and energy must now be taken by visits to a pulmonologist, a neurologist, a physical therapist.... Besides, how much" does someone on a peg need dental care? I shall be very daring now. Despite my M.A. in one of the allied health professions, and because of my education and acquaintance with research methodology and the many professionals that maintain elitist status by this religion, I have a disclosure. I follow my heart. It has not steered me wrong yet. When I later find "scientific" or quasi- scientific evidence to back-up what my heart told me right along, then I am really thrilled. In my heart I feel the mouth infection the dental swelling no one wanted to follow-up on after my mother's oral surgery ran too close before the onset of slurred speech. In fact, I thought it was dental pain that made crisp pronunciation difficult. Logic - that thing called "cause and effect" - also brought me to ponder the rapid succession of these two unique occurrences within the limited space of my mother's mouth. Then I read about all of you others who have similar suspicions. I notice, too, we're not drawing correlations between bubble gum and bulbar ALS. We're not that stupid or picking at straws, as some would have us believe. Even though my mother has been tested for the echo-7 virus to no avail, I have not given up a search for an infectious link. If Lyme Disease and other infectious diseases show symptomatology similar to ALS and have, in fact, occasionally been misdiagnosed as ALS, then might the echo-7 have cousins that don't show up in a test? I just don't know what to do to find, or convince, someone in the state of Connecticut to address my hunch and treat Mom with whatever anti-viral drug may be available, or even experiment with antibiotics. The cost of a whole plethora of drugs is still far cheaper than the cost of maintaining someone with the disease in full bloom. Could it be that if we premised research and treatment on a theory of combined factors we might beat this thing? Regina DeMarasse (6) ===== Items for Sale ========== >From : MarykBarb@aol.com Date : Mon, 19 Feb 2001 Subject: items for sale The following items are for sale: -Wheelchair: Hemi, wheels can be raised or lowered as well as the seat 2 additional custom seated, Air pump back cushion, Custom Oak foot board Valued at $2800 Asking $1000 - Transport Chair: $100 - Walker: Portable, folding with front wheels Valued at $127 Asking $50 - Inflatable hair washer Valued at $48 Asking $25 - Hospital Stand: Adjustable table with wheels, open on one side to fit over bed or chair Valued at $150 Asking $75 - Full size shower Bench Valued at $125 Asking $50 - Gel mattress twin size Valued at $260 Asking $125 - Exercise Pulling: fits over the door Asking $10 - Bed Rail: Rotatable bed rail, attaches to side of bed Valued at $215 Askin $100 - Air Mattress: twin size Asking $50 FREE: Feeding Tube bags, for feeding through pump If you are interested in any of the above please contact Barbara at: 732 833-0157 (NJ) or Marykbarb@aol.com (7) ===== re: HMO quality of care ========== >From : KIPRS@aol.com Date : Fri, 2 Mar 2001 Subject: Re: HMO quality of care The point of Patrick Griffin's long article about HMOs was unclear to me (ALSD814). The current conversation on this list about HMOs was, until Griffin posted his letter, about whether HMOs provide inferior care. That, in any case, is all I've talked about, beginning with a short post about my article in the July 1999 edition of the American Journal of Public Health (AJPH). But Griffin talked about everything except quality of HMO care. He didn't offer any evidence for or against the proposition that HMO care is inferior. Until Griffin says otherwise, I will assume he has no quarrel with the conclusion of my AJPH article that HMO care is inferior. So if Griffin wasn't addressing the quality-of-HMO-care issue, what was he writing all those words about? He devoted the bulk of his article to three propositions: (1) HMOs do not sell health insurance; (2) some SUVs get better mileage than some cars; and (3) "the so-called decline in the US health care system ... began with the cost-plus fee reimbursement system that predates HMOs." All three of these propositions take us some distance away from the HMO quality question, and a long way from ALS. I may address propositions (2) and (3) later when I've had a chance to think about whether I want to follow Griffin way off the ALS Digest agenda. However, I do not intend to waste my time or anyone else's time rebutting the first proposition unless at least two other people on this list indicate they share Griffin's strange belief that "HMOs are NOT insurance companies." If a minimum of two other people on this list will post notices to the ALS Digest (with your full names attached) stating that you too believe HMOs are not in the business of insurance, I'll take the trouble to address that belief. But if two more people do not step forward to indicate they are as confused as Griffin is about what HMOs are, I won't take up this list's time debating such nonsense (sorry to sound harsh, but I don't know how else to put it). I will assume the entire world knows Griffin is very confused on this topic. Question for Griffin to ponder while we await confirmation that two more people are as confused as he is: Could you explain to me this sentence from today's Wall Street Journal (March 2, 2001): The Texas Department of Insurance put PacifiCare of Texas under "administrative oversight" in November because of "quality of care" problems, largely the company's failure to pay doctors promptly, a department spokesman said" ("PacifiCare Stock Drops 21% on News Of Regulatory Actions in Two States," by Rhonda L. Rundle). PacifiCare is one of the largest HMOs in America, and is identified as an HMO in the Wall Street Journal article. If PacifiCare doesn't sell health insurance, why is it regulated by the Texas Department of Insurance? Kip Sullivan (8) ===== re: Am I in the right place? ========== >From : "Pat Sullivan" Subject: Re: Am I in the right place? Date : Tue, 13 Feb 2001 >I have been diagnosed with ALS for a year. I am about to persue an >alternative treatment using glutathione and human growth hormone. I would >like find others who have tried this approach. Am I in the right place? >I am also generally interested in news and dialog. Merrily: I was diagnosed in Mar 99 and while conventional medicine cannot offer much, treatment with the most powerful antioxident out there, glutathione, is available. My neurologist is curiously tolerant of my alternative therapy and wonders just how I would have done without the IVs treatments I do. I receive glutathione through an MD who believes in alternative therapies and trained me to give myself 1200 mg IV push every other day. The frequency was my decision. Although I have had some deterioration and use an AFO on one foot and a walking stick, I am still upright and mobile. One of my doctors hadn't seen me in 8 months and was very surprised at my condition. This is not to say that glutathione did that. He said, we just don't know how much the human mind plays (and he's right). When I first started glutathione, my reactions were quite dramatic, with increased strength in my legs, lessening of the twitching, walking was much better. I've been doing IV since July 2000 and at this point I just feel better on the days I do IV, stronger, more stamina, etc, but no dramatic reactions like the first few times. Glutatione is in there doing it's job intracellularly. There are no side effects. It's a natural substance. I am kind of an ongoing experiment right now. We all know of course, there is no cure and I don't want people to get their hopes up. What seems like it may help one, does not necessarily mean it will for another. I only know I feel I am hanging in there pretty good and that's a very big blessing. We need to find a cure! Also it is not an inexpensive therapy and costs will range depending on whether you do it yourself or have a doctor/nurse do it for you. These are also not covered by insurance. It is all out of pocket. Dr. David Perlmutter has used this therapy mostly for Parkinson's patients and with most successes there. I don't know anything about Human Growth Hormone other than it can be very dangerous and I wouldn't do it for myself. Good luck with your treatments and keep us posted as to your progress. === end of alsd 822 ===