=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #854 (18 May 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. ebay 2 .. need wheelchair van 3 .. For Sale 4 .. Van For Sale 5 .. ALS Chat Group from Connecticut 6 .. personal assistant needed 7 .. best nurse jobs 8 .. re: Professor vs. homeopathic? 9 .. decision on use of vent 10 . Health scare heads-up 11 . re: online reading material 12 . re: Professor vs. homeopathic? 13 . Modified Baylor Scale 14 . re: home care 15 . re: homeopathy vs. antibiotics 16 . re: swallowing and medication 17 . Immunikine 18 . re: side effects - alcohol and riluzole 19 . re: Professor vs. homeopathic? 20 . prognostic factor in sporadic ALS 21 . gabapentin in patients with ALS (1) ===== ebay ========== Date : Wed, 16 May 2001 >From : Bill Blossom Subject: ebay Hi, Here is a great site to buy hard to find used items. Gobs of items of every type, including used out of print cookbooks, kitchen appliances etc.: http://www.ebay.com Enjoy, Bill (2) ===== need wheelchair van ========== >From : "Roggensack, Margaret E." Subject: need wheelchair van Date : Thu, 17 May 2001 i am looking for a used wheelchair van. i need side entry for tilt in space manual chair. i have chair specs, if that's a consideration. i am in maryland, but could arrange to have someone drive van to us if one is available at a reasonable distance. best for people to contact me by email. (3) ===== For Sale ========== Date : Wed, 16 May 2001 >From : Robin Swope Subject: For Sale For Sale: Never used Motorized Wheelchair Sunrise MJ0000632 with Quickie G-424 Chindriver Mini Joystick. $3,000.00 obo Washington DC area TEL 202-319-8717 (4) ===== Van For Sale ========== Date : Mon, 14 May 2001 >From : Robin Swope Subject: Van for Sale Van for Sale: 2000 Dodge Grand Caravan Sport/ IMS RampVan Inferno Red with Grey Mist Interior 3.3L V6 Engine, Automatic Transmission, Dual Zone Temperature Control / Rear Air Conditioning and Heating, Radio AM-FM/ Cassette/ CD/ Equalizer Electrically Operated Sliding Side Door and Ramp with Safety Sensor Automatic Van "Kneel" with Override Switch Control Switches on Remote, Exterior, Interior Rear Wall, and Dash Quick Release Removable Front Seats EZ Lock Wheelchair Restraint System or Strap Tie Downs $32,500 Northern VA area: 703-644-6192. (5) ===== ALS Chat Group from Connecticut ========== >From : "Beth Rookey" Subject: ALS Chat Group from Connecticut Date : Mon, 14 May 2001 The ALS Chat Group from Connecticut will debut Thursday, May 17 at 1:00 PM Eastern. Hosted by local MDA/ALS Task Force on Public Awareness member, Dave "dgals" and MDA Health Care Services Coordinator, Elissa "woof" this monthly, 90-minute chat session will promote a wide ranging discussion about ALS and how MDA can help. http://als.mdausa.org/chat/index.cfm Beth Rookey PALS dx. 10/92 (6) ===== personal assistant needed ========== >From : "sylvia brewster" Subject: Re: Date : Mon, 14 May 2001 A request for help in finding a personal assistant: My husband has ALS and will soon leave his job and go on disability. At that time, we will leave our home in Central Texas and move to Massachusetts to live near my family. My husband will need round-the- clock care, and I am concerned that we may not be able to find it in our new, less populated area. If anyone knows of any reputable employment agencies that place live-in health aides from overseas (or from the U.S.), please email me. Thank you so much. Sylvia B. (7) ===== best nurse jobs ========== Date : Tue, 15 May 2001 >From : kellyabb@USA.NET Subject: NEW: bestnursejobs@topica.com To : NEW-LIST@LISTSERV.CLASSROOM.COM Description: Place where nurses and CNA's can share experiences and gain support and information on finding a nursing position. Subscription Instructions: bestnursejobs@topica.com Owner/Host Email Address: kellyabb@usa.net (8) ===== re: Professor vs. homeopathic ========== >From : Jim Duke Subject: Professor Vs. homeopathic: a reply to Millignton Date : Mon, 14 May 2001 I can supply evidence that an ice cream cone given daily will significantly relieve the symptoms of specified mental illnesses. Does this mean ice cream is an approptriate medicine? Or does it mean that a person who takes the time to bring an ice cream cone every day to a patient in an institution demonstrates devoted personal concern that somehow has an effect on the patients behavior? There are countless people who err in judgement about cause effect. Most often they believe because they want to believe; sometimes they are in desperate need to believe. And, unfortunately, there are those who exploit faulty beliefs by charging outrageous fees for "treatments" whose only value is to make someone a lot of money. Dr. Sampson is the kind of informed individual who monitors the networks where quackery can abound, and calls a spade a spade. This is a noble effort to minimize the explotation of those of us most vulnerable, i.e., ALS victims and their loved ones. I for one hope he maintains his vigil as someone needs to help us help ourselves. (9) ===== decision on use of vent ========== Date : Tue, 15 May 2001 Subject: Re: >From : John Washburn PALS desires communication re decision on use of vent. Desires info and advice on practical issues, finances, emptional issues and spiritual implications from PALS and caregivers at jwashbur@cub.kcnet.org Messages especially for my caregiver may be sent to: longjohn_17747@yahoo.com Thanks a Lot, John Washburn (10) ===== Health scare heads-up ========== Date : Mon, 14 May 2001 Subject: >From : CIVIC@101communications-news.com News Highlights from civic.com May 14, 2001 http://www.civic.com/ Daily News for IT Professionals in State and Local Government ************************************************************ Health scare heads-up ************************************************************ The Centers for Disease Control and Prevention is coordinating a national communication network for use in health emergencies. http://www.fcw.com/civic/articles/2001/may/civ-case-05-01.asp (11) ===== re: Online reading material ========== >From : "Pat Conway" Subject: Re: Online Reading Material Date : Mon, 14 May 2001 I created a little quick and dirty page of mostly free ebooks. http://www.geocities.com/pmconway_ya/ If you let me know what format you're looking for and what subjects or genres you're interested in I can tailor it some next week. Pat (12) ===== re: Professor vs. homeopathic ========== >From : "Loris Buccola" Subject: RE: Date : Tue, 15 May 2001 Regarding Dr. Sampson: I wish to thank him publicly for his balanced and helpful responses to medical questions posed by desperate people with this terrible disease. I hope he continues the monitor questions and comments here, and provide his perspective. Love, Loris (13) ===== Modified Baylor Scale ========== >From : Bethbatemn@aol.com Date : Thu, 17 May 2001 Subject: Modified Baylor Scale Can anyone direct me to where my Physical therapist can obtain the modified Baylor Scale and the administration procedures. Thanks for your help (14) ===== re: home care ========== Date : Thu, 03 May 2001 >From : "Elizabeth H." Subject: RE: Home Care Thanks to all the kind folks who e-mailed me regarding my "rant" on home care. I should have made it clear in my post that both my husband and I work/ed for the state of Ohio and are under a private pension plan and health insurance(PERS). The SS taxes he paid at part time jobs before he graduated college were too limited to qualify him for social security aid. I try to make that clear to professionals I speak to, but many people seem very confused themselves over how the SS systems work for the disabled. I thought I had most of it figured out from dealing with my parents, but there are so many quirks. Since the over age 60 requirements and so forth are more common, that's the understanding most have. I have to stop assuming health care professionals know all the ins and outs; it gets so confusing to have different advice from everybody. Even the SS people aren't that familiar with the fact that some people aren't in the social security network. I won't even go into the constantly changing situation with county welfare programs. Betsy H. (15) ===== re: homeopathy vs. antibiotics ========== >From : Bernie Windham Subject: re: homeopathy versis antibiotics Date : Thu, 10 May 2001 I don't know much about homeopathy, but I came across the following from a book that was recommended for me regarding my son, who was part of the reason for my research on toxic effects of mercury. The book is Dr. J. Shaw Biological Treatments for Autism and PDD For ear infections: Consult a health practitioner trained in homeopathy. "The technique called homeopahty was shown to be more effective than conventional antibiotic treatment in a German study of 103 children between 1 and 11 years. Homeopathy drops are also available in most health food stores. After one year 70.7 % of the children treated with homeopathy had no relapses compared to 56.5% of children treated with antibiotics. The average number of relapses was also much higher in the children treated with antibiotics than in those treated with homeopathy." Source: Friese KH et.al Otitis media in children: a comparison of conventional and homeopathic drugs. Head and neck Otorhinolaryngology 44:462-466 1996 Bernie W ps, I also participate on the Autism list and have seen reports from thousands of parents of autistic kids, a condition that has increased by 1000% in the last 10 years, found to be mostly because of mercury thimerosal in vaccinces. I have a paper on autism/mercury connection on my web site as well, and there is more in common between some mechanisms involved in ALS & autism than one might think. A lot of the parents on the list report major problems such as candida overgrowths and recurrance in use of antibiotics for ear infections, etc. and better success with alternative methods in dealing with such infections. (16) ===== re: swallowing and medication ========== >From : Sherryeco@aol.com Date : Mon, 14 May 2001 Subject: Re: In Re: To swallowing medication. I have a Peg Tube for about six months. What I do is take a cup and put my medication in the cup, fill with water and microwave for two minutes. Take out they are dissolved and add just cool water and down the Peg Tube they go. As far as vitamins I use liquid and they also go into the peg tube. I use creatine in my peg tube with juice. After months of gagging and trying everything I gave up. I love my peg tube. Sherry (17) ===== Immunikine ========== >From : "Nancy Watkins Jones" Subject: Re: Date : Fri, 15 May 2001 Hello everyone, I am a personal assistant for a wonderful lady named Mercedes who was diagnosed with ALS ten years ago. Since I became employed by "Mercy" I have done continous research on the disease of ALS. Although stem cell research seems to be the most promising I was able to locate a doctor who would provide a prescription for a drug called Immunikine. Mercedes has taken it for a little over a week and last night her left foot and two toes began to move. Today, her entire foot and all toes on that foot have been moving. The drug is not available in the US as yet but if you can find a doctor willing to be educated on the drug and write the prescription, it can be mailed legally from outside the US. Some of you may already know or have heard about Immunikine as it was originally meant for MS patients and I understand they are having some improvements as well. (18) ===== re: side effects of alcohol with riluzole ========== >From : "Moore Family" Subject: Re; Side effects of alcohol with riluzole Date : Tue, 15 May 2001 My husband was dx with ALS Sep 99. His doctor told him not to drink because of the effects alcohol does with ALS. He also said a drink once in awhile is o.k. but watch your limit. A few weeks after being dx he had 2 beers. His ALS started with his voice, hands, and arms. What happened after drinking two beers, he could not get the words out. I'm sure it's different for everyone but it did effect him this fast. Also caffeine is another stimulant. After about 8 months my husband and family were camping and the only hot thing to drink was coffee and not the decaffeinated. After drinking a big cup his arms were moving like crazy. Alcohol and caffeine are stimulants and my effect people different. Remember if you do just try a little at a time. Donna (19) ===== re: Professor vs. homeopathic ========== >From : "Mike Beal" Subject: ALSD 853: Sampson Date : Mon, 14 May 2001 >I never thought I'd respond to WSampsons' mutterings but ENOUGH IS ENOUGH >ALREADY SAMPSON. Just because things don't come from your medical books >simply does not give you the authority to demean them. Keep in mind Sampson >that the vast majority of your so called gospels of medical literature >were considered quackery first too.... Disagree if you will and say so if you must, but do so civilly and respectfully. Your schoolyard bully tone has no place in this community. --Mike Beal, Brantford Ontario Canada (20) ===== prognostic factor in sporadic ALS ========== Date : Wed, 02 May 2001 >From : Will Hubben Subject: prognostic factor in sporadic ALS Homozygous deletion of the survival motor neuron 2 gene is a prognostic factor in sporadic ALS. Neurology 2001 Mar 27;56(6):749-752 (ISSN: 0028-3878) Veldink J.H.; van Den Berg L.H.; Cobben J.M.; Stulp R.P.; De Jong J.M.B.V.; Vogels O.J.; Baas F.; Wokke J.H.J.; Scheffer H. Department of Neurology (Drs. Veldink, van den Berg, and Wokke), University Medical Center Utrecht BACKGROUND: Spinal muscular atrophy (SMA) results from mutations of the survival motor neuron (SMN) gene on chromosome 5. The SMN gene exists in two highly homologous copies, telomeric (SMN1) and centromeric (SMN2). SMA is caused by mutations in SMN1 but not SMN2. The clinical phenotype of SMA appears to be related to the expression of SMN2. Patients suffering from the milder forms of SMA carry more copies of the SMN2 gene compared with patients with more severe SMA. It is suggested that the SMN2 gene is translated into an at least partially functional protein that protects against loss of motor neurons. OBJECTIVE: To investigate whether genetic mechanisms implicated in motor neuron death in SMA have a role in ALS. METHODS: The presence of deletions of exons 7 and 8 of SMN1 and SMN2 was determined in 110 patients with sporadic ALS and compared with 100 unaffected controls. RESULTS: The presence of a homozygous SMN2 deletion was overrepresented in patients with ALS compared with controls (16% versus 4%; OR, 4.4; 95% CI, 1.4 to 13.5). Patients with a homozygous SMN2 deletion had a shorter median time of survival (p < 0.009). Furthermore, multivariate regression analysis showed that the presence of an SMN2 deletion was independently associated with survival time (p < 0.02). No homozygous deletions in SMN1 were found. Carrier status of SMA appeared to be equally present in patients and controls (1 in 20). CONCLUSION: These results indicate that, similar to SMA, the SMN2 gene can act as a prognostic factor and may therefore be a phenotypic modifier in sporadic ALS. Increasing the expression of the SMN2 gene may provide a strategy for treatment of motor neuron disease. MEDLINE Indexing Date: 200100 PreMedline Identifier: 0011274309 --------------------------- Will Hubben whubben@earthlink.net (21) ===== gabapentin in patients with ALS ========== Date : Fri, 4 May 2001 >From : Will Hubben Subject: gabapentin in patients with ALS Phase III randomized trial of gabapentin in patients with amyotrophic lateral sclerosis. Neurology 2001 Apr 10;56(7):843-8 (ISSN: 0028-3878) Miller RG; Moore DH; Gelinas DF; Dronsky V; Mendoza M; Barohn RJ; Bryan W; Ravits J; Yuen E; Neville H; Ringel S; Bromberg M; Petajan J; Amato AA; Jackson C; Johnson W; Mandler R; Bosch P; Smith B; Graves M; Ross M; Sorenson EJ; Kelkar P; Parry G; Olney R BACKGROUND: Preclinical and clinical studies of gabapentin in patients with ALS led the authors to undertake a phase III randomized clinical trial. METHODS: Patients were randomly assigned, in a double-blinded fashion, to receive oral gabapentin 3,600 mg or placebo daily for 9 months. The primary outcome measure was the average rate of decline in isometric arm muscle strength for those with two or more evaluations. RESULTS: Two hundred four patients enrolled, 196 had two or more evaluations, and 128 patients completed the study. The mean rate of decline of the arm muscle strength was not significantly different between the groups. Moreover, there was no beneficial effect upon the rate of decline of other secondary measures (vital capacity, survival, ALS functional rating scale, timed walking) nor was there any symptomatic benefit. In fact, analysis of the combined data from the phase II and III trials revealed a significantly more rapid decline of forced vital capacity in patients treated with gabapentin. CONCLUSION: These data provide no evidence of a beneficial effect of gabapentin on disease progression or symptoms in patients with ALS. MEDLINE Indexing Date: 200104 --------------------------- Will Hubben whubben@earthlink.net http://www.steveholly.com/Will.html === end of alsd 854 ===