=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #845 (29 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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: ALS questions from Italy (ALSD844-5) 2 .. cushion 3 .. Pharmacy drug info resources 4 .. van for sale 5 .. Care Giver costs 6 .. Good news for travelers 7 .. LUDDE PROTOCOL? 8 .. remore control? 9 .. ALS and pain? 10 . PALS - Portugal 11 . re: professor vs. homeopathic? (1) ===== re: ALS questions from Italy (ALSD844-5) ========== Date : Sat, 28 Apr 2001 >From : "Edward Anthony Oppenheimer, MD" Subject: Dear Alessandra Zavatta, I read your email inquiry of 26 April, about your father who has had ALS since 1994. Very brief answers to your questions, based on my understanding: <> There are today many things that can be done to treat ALS. These can improve the quality of life, and can greatly improve survival. <> ALS is a progressive neurologic motor neuron disease. The pattern of impairment, and the rate of progression varies greatly from person to person. <> Progression can stop (plateau). Some people do not progress to complete motor neuron involvement by the ALS neuropathic changes. Recovery from ALS is rare (probably does not occur). <> Clinical research on treatments for ALS is very active at this time. At this time Rilutek (riluzole) is the first, and only, drug approved worldwide for the treatment of ALS. It is only available by prescription. Other available medications can be helpful in the care of a person with ALS, although they do not change the progression of the disease. Assistive technologies can be critically important to maintain good nutrition, breathing and communication. Since you live in Rimini, Italy, you might contact, for information on treatment centers and clinical research studies, the: Associazione Italiana Sclerosi Laterale Amiotrofia (AISLA) Via Andrea Costa 2/A, 28100 Novara, Italy Tel/Fax: International +39 0321 392861 E-mail: segreteria@aisla.it Web site: http://www.aisla.it Edoardo Ferlito, President Mauro Codini, Secretary Lea Gavin, Organizing Secretary Office Hours: from Monday to Friday 08:00 - 13:00 The International Alliance of ALS/MND Associations can be found on the Internet at: http://www.alsmndalliance.org/index.shtml The World Federation of Neurology has an ALS web site: http://www.wfnals.org/ and a page with reviews of published ALS research: http://www.wfnals.org/ReviewsofLit.htm There are many other very good ALS sites on the Internet with information (just be sure to check that they are reliable). Some are excellent individual Internet sites, others are organizations, such as the ALS Association http://www.aisla.it/ http://www.alsa.org/ MDA http://www.mdausa.org/disease/als.html With all best wishes, Edward Anthony Oppenheimer, MD, FCCP Pulmonary Medicine Los Angeles, California USA Email: Eaopp@UCLA.edu >My name is Alessandra Zavatta, I'm Italian. My father is afflicted with >ALS since 1994 and now he is not able to use his legs (he is 58 years >old). > >I'd like to speak with some researcher; are there some research >institutes of ALS in Europe, or only in America? How can an Italian >citizen (like me) be inclused in some list to test new medicine to cure >ALS? Are there other medicine, except Riluzolo, for treatment of ALS? > >Is it possible to recover from ALS? Have you recovered? (2) ===== cushion ========== >From : "Diane" Subject: cushion Date : Thu, 26 Apr 2001 >Ernest49@webtv.net (Ernest Cosson) wrote: >My name is Kelli and I am trying to help Bill C. find the best type of >cushion we can for him. He generally sits in a office type chair that is >20 " wide by 19 " deep. We have looked up at least a jillion of these >cushions and can't really decside which seems best... The two most recommended types are gel filled cushions and air cushions. Foam cushions don't give adequate pressure relief for our level of use. I haven't used the gel type but they do a good job. Their drawback is their weight. They are heavy and that's a nuisance if you move them from chair to wheelchair very often or use a manual wheelchair that you put in the trunk of a car. ROHO is the brand of air cushion I use. The drawback of air cushions is of course the possibility of leaks. My first ROHO never leaked in about 5 years of use -- even though our cats seemed to like napping on it whenever I wasn't using it! That one got lost (blew off the roof of the car where my husband had set it while putting my manual wheelchair in the trunk, forgot it, and we drove off!) It's replacement never leaked either, but when I got a power wheelchair, the physical therapist recommended a ROHO with separate air compartments so the front and back could be inflated to different levels. This one seems to have a slow leak. All it requires is a quick pump of a little extra air every few weeks though. Some folks have problems with cushions because when they lean forward in their chair, the weight shift caused the cushion to squish down in front and push up in back, dumping them out of their chair. If balance and strength are so limited that this is a risk, it is time to use a seatbelt, cushion or not. Something else to consider is how any cushion will affect Bill's positioning in the chair. It will raise him up a couple of inches. That doesn't seem like much, but there are two very important things to correct. First, he needs to have his feet reach the floor with minimal pressure on the back of his thighs. If the distance to the floor is even an inch or two too far, this pressure will reduce the circulation in his legs and his feet will swell. Swollen feet and ankles are very common when mobility is limited and we have to be very careful not to add to the problem. Swollen legs are miserably uncomfortable and the damage to the circulation becomes permanent. Second, it is very important that his arms are well supported by the armrests of the chair. As shoulder muscles weaken, the weight of the arms will slowly sublux (dislocate) the shoulder joints. Bill won't feel this happening at first, but in time it will make him uncomfortable, especially when lying on his side. I know Bill may be resistant to the idea of getting a wheelchair -- we all are upset, afraid, depressed by, that step -- but the reality is that he will need one at some point. (3) ===== Pharmacy drug info resources ========== >From : Valerie Rankow (vgr99@EARTHLINK.NET) Sent : Friday, April 27, 2001 To : MEDLIB-L@LISTSERV.ACSU.BUFFALO.EDU Subject: Re: Pharmacy Drug info resources Online Drug Information Resources (revised April 26, 2001) By Valerie G. Rankow American Association of Colleges of Pharmacy Basic Resources http://www.aacp.org/Resources/Reference/Basic_Resources/basic_resources. html CenterWatch Listing of Newly Approved Drug Therapies http://www.centerwatch.com/patient/drugs/druglist.html Drug Literature Evaluation http://www.mcp.edu/course/21/index.shtml DRUGFACTS.com - A Drug, Herbal, Interaction, and Disease Info Resource http://www.drugfacts.com Drug InfoNet http://www.druginfonet.com/druginfo.htm FDA Electronic Orange Book Approved Drug Products with Therapeutic Equivalence Evaluations http://www.fda.gov/cder/ob/ Green Book - FDA Approved Animal Drug List http://www.fda.gov/cvm/greenbook/greenbook.html Hardin Meta Directory of Internet Health Sources: Pharmacy and Pharmacology http://www.lib.uiowa.edu/hardin/md/pharm.html Intellihealth Drug Resource Center (USP DI. vol. 2 Advice for the Patient.) http://www.intelihealth.com/IH/ihtIH Interactions: IBIS Guide to Drug-Herb and Drug-Nutrient Interactions http://www.integrative-medicine.com/Interactions.html Martindale's Health Science Guide - Clinical Pharmacology & Toxicology http://www-sci.lib.uci.edu/HSG/Pharmacy.html MCPHS - Sheppard Library - Recommended Web Sites http://www.mcp.edu/si/sl/sl_rec.shtml MEDLINE Plus (USP DI. vol. 2 Advice for the Patient.) http://www.nlm.nih.gov/medlineplus/druginformation.html PharmWeb http://www.pharmweb.net/ PhRMA - Pharmaceutical Research and Manufacturers of America http://www.phrma.org/ RxList http://www.rxlist.com Safemedication.com (American Society of Health-System Pharmacists) http://www.safemedication.com/ Samford University McWhorter School of Pharmacy Global Drug Information Service WWW Pharmacy Resources http://www.samford.edu/schools/pharmacy/dic/pharmres.htm Street Terms for Drugs http://www.drugs.indiana.edu/slang/home.html U.S. Food & Drug Administration http://www.fda.gov/cder/drug.htm University of Connecticut Health Center Pharmacy Information Resources on the Web http://library.uchc.edu/eduoff/pharmsites.htm University of Pittsburgh Internet Resources: Pharmacy, Pharmacology & Therapeutics http://www.hsls.pitt.edu/intres/index.html?page=25 Virtual Library: Pharmacy http://www.pharmacy.org/ INTERNATIONAL Drug Information Resources Online BIAM (Banque de Donnies Automatisie sur les Midicaments) http://www.biam2.org/ French drug database, available only in French. Free registration required British National Formulary http://bnf.vhn.net/ CHN - Canadian Health Network http://www.canadian-health-network.ca Chinese Medicine http://www.china-med.net/herb_search.html European Agency for the Evaluation of Medicinal Products - http://www.emea.eu.int/ France http://www.theriaque.org/ http://www.vidalpro.net/ Indice Por Accion Farmacologica Spanish Language Drug Index http://www.manes.com.ar/paginas/a/ind_farm.htm Martindale's Health Science Guide: Pharmacy Center Links to many international drug sites, including French, Portuguese, German and more: http://www-sci.lib.uci.edu/~martindale/Pharmacy.html#MDD NetDoktor (Germany) http://www.netdoktor.de/medikamente/index.shtml Patient UK: Medicines and Drugs http://www.patient.co.uk/drugs.htm PharmWeb http://www.pharmweb.net/ Planet Medica http://www.planetmedica.com/ Portalfarma.com Spanish Language Drug Database http://www.portalfarma.com/home.nsf RxList http://www.rxlist.com Samford University McWhorter School of Pharmacy Global Drug Information Service WWW Pharmacy Resources http://www.samford.edu/schools/pharmacy/dic/pharmres.htm Switzerland Kompendium http://www.kompendium.ch/app/search_f.cfm University of Turin MedPharm (Italy) http://www.medfarm.unito.it/ May reprint with permission. Valerie G. Rankow, MLS, AIIP Professional Information Services Research, Writing & Consultation vgr99@earthlink.net ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ (4) ===== van for sale ========== Date : Sat, 28 Apr 2001 >From : Nancy Yates Subject: van for sale Our son, Dave, lost his valiant struggle with ALS last October. We have a 1988 Plymouth Voyager Van with a lift and tie-down system for a power chair. 29,000 miles. Excellent condition, New battery and tires. $7000. nyates@en.com or 440-884-3982. We are in the Cleveland, Ohio area. (5) ===== Care Giver costs ========== Date : Thu, 26 Apr 2001 Subject: Care Giver costs >From : Sean Malone Good afternoon PALS, My Wife Kay was dx in '95. I work full time and we have hospice 3 mornings per week. We might now be at the time we need to hire more help. Since we are on Hospice we cannot have home health paid by Medicare. We would like some tips or information, or ideas for care. We have heard prices are varied. I curently do all the care giving. But am burning out. So If you have anything please let us know. Also if it would be better to drop hospice and get Medicare to pay for care giving more often. So be it. Kay has been with hospice for 3 years. Sean & Kay Malone (6) ===== Good news for travellers ========== >From : "Kevin Duffy" Subject: Good news for travellers Date : Fri, 27 Apr 2001 We recently had a very successful transAtlantic airline flight, from Europe to America, and back again, put 3,000 miles on a rental wheelchair accessible van, while using our BiPap with a battery. While on the flight we used a Deep cycle Gel cell Battery with a DC Interface module Model # 552097 obtainable from Respironics Inc in PA. The interface module had a plug which went into the cigarette lighter, with the BiPap on the floor of the van. We had a fantastic trip, did the Skyline drive in Virginia, visited Montecello (they have a special lift for wheelchairs which Mr. Jefferson would have been proud of). I am telling you about this trip to encourage everyone to 'get up and go' if it is within your means. With this battery and interface module, PALS need not be confined to their home. It is magic and would give a whole new type of mobility and a new life to PALS with BiPaps. (7) ===== LUDDE PROTOCOL? ========== Date : Sat, 28 Apr 2001 Subject: Re: >From : eliork Is anyone familiar with the LUDDE PROTOCOL by Frank Ludde from Vancouver? This is a METABOLIC treatment that may help with ALS, SMA, MD, MND, and other diseases. Any testimonials will help. Any information will be appreciated. Any studies on the Ludde Protocol? Dr. Kinarthy Psychologist (8) ===== remote control? ========== Date : Fri, 27 Apr 2001 Subject: Re: >From : eliork Due to his MND, my son has only the use of his right hand. The elevator comes with an up and down switch and it works. However, Can someone out there recommend a remote control, box, push button, switch, radio control or a small device that can open the elevator doors and the escape door form his wheelchair? Who makes a wheelchair attachment with 3 push buttons? sincerely, Elior (9) ===== ALS and pain? ========== >From : "Debra Martinez" Subject: question Date : Wed, 25 Apr 2001 I am inquiring about pain that is associated with ALS, is it a painful disease and what conditions cause the pain? A good freind who has over- medicated in the past now has ALS. We want to be supportive but we also don't want to see her fall into a hole and never come out again! I understand that this is a devastating diagnosis for a 38 yr. old and we are all in her corner. We don't want to lose her to RX meds bofore we lose her to ALS. Thanks! (10) ===== PALS - Portugal ========== >From : "Rosalia Gaspar" Subject: PALS- Portugal Date : Thu, 26 Apr 2001 My name is Rosalia. I'm from Portugal and I was diagnosted with ALS last February. I don't exactly know how to feel because evrything is new to me, even for a nurse like me. I feel ok but I have a lot of fasciculations, especialy at night. I would like to talk to anyone who is going thru this or being with someone with ALS. I have the need to say something but I don't always know how! Thanks for being here! God Bless all PALS and Caregivers! There is always hope. Rosalia Gaspar rosalia.gaspar@clix.pt (11) ===== re: professor vs. homeopathic ========== >From : SKressen@aol.com Date : Mon, 26 Feb 2001 Subject: Re: professor vs. homeopathic I, too, was dx w/ ALS in January 2001. My earliest research and personal conversation w/ caring members of the ALS community leads me to the same point of view: there is the Western Scientific Medical approach (which today can apparently be defined solely as RILUTEK) and, for lack of a better term, the "alternative medicine" or holistic approach. As to which one is "right" or "wrong"...who cares! Let's pursue every angle we have available to us! As a benchmark, I can tell you that I am taking Rilutek 2 x per day (western), have adjusted my diet to eliminate most sugar, salt, red meat, fats and to dramatically increase fish (dietary), receive massage once per week (holistic), take many of the same supplements/ vitamins you mention plus several others (homeopathic). I have been at this for 30 days, more or less, so I know I am still very naive about the realities of facing this disease. But I plan to beat it. And to me this is the most important "treatment" of all POSITIVE ATTITUDE and a strong faith in a Master Plan beyond my comprehension which will one day make perfect sense. For what it is worth, these are the toughts that your note brought to mind. God bless all of us, Steve Kressen Rogers, Arkansas skressen@aol.com === end of alsd 845 ===