=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #846 (30 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Philadelphia Quality of Life Day Conference 2 .. Riluzole for ALS/MND: A Cochrane Review 3 .. ALS Family Symposium 4 .. Axonal Regeneration in Rat Brain with chondroitinase ABC 5 .. re: Care Giver costs (ALSD845-5) 6 .. Many Thanks! (1) ===== Philadelphia Quality of Life Day Conference ========== Date : Mon, 30 Apr 2001 15:17:02 -0400 >From : "Alisa Brownlee" Subject: Philadelphia Quality of Life Day Conference The ALS Association, Greater Philadelphia Chapter is proud to sponsor a new one-day conference called Quality of Life Day. This event will take place on Saturday, May 5, 2001 at the Fort Washington Expo Center in Fort Washington, Pennsylvania from 9am-5:30pm. Vendors will be present from 9am-1pm and will feature products that include ramps, accessible van, adaptative equipment, augmentative communication equipment, home health care agencies, nursing agencies, and therapy dogs. Education sessions will begin at 10:30am and will include the following topics: --Estate Planning --Financial Planning --Sexuality & ALS --Do-In (Japanese art of self massage and energy treatment) --Driving and Traveling with ALS --Adaptive Devices to Improve Quality of Life --Meditation --Yoga --Music Therapy --Art Therapy --Tai Chi (A method of meditation and self integration through slow relaxed conscious movements) --How to tell the Children/Grandchildren --Cooking Demonstration (how pureed and thickened food and liquids can be creative and tasty) --Accepting Help in the Home --Home Modification (Info on ramps, bathrooms, stair glides, etc...) There will also be a separate track for children that will feature puppet therapy, yoga, and music and art therapy. This conference is free to PALS and their families. Registration is required. Call 215-631-1877 or e-mail: alisabrownlee@yahoo.com (2) ===== Riluzole for ALS/MND: A Cochrane Review ========== Date : Mon, 30 Apr 2001 12:08:28 -0700 >From : Will Hubben Subject: Riluzole for (ALS)/(MND): A Cochrane Review Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) Miller RG, Mitchell JD and Moore DH A substantive amendment to this systematic review was last made on 26 October 1999. Cochrane reviews are regularly checked and updated if necessary. Background: Riluzole has been approved for treatment of patients with amyotrophic lateral sclerosis (ALS) in some countries but not others. Questions persist about its clinical utility because of high cost, modest efficacy and concern over adverse effects. Objectives: To examine the efficacy of riluzole in prolonging survival, and in delaying the use of surrogates (tracheostomy and mechanical ventilation) to sustain survival. Search strategy: Search of the Cochrane Neuromuscular Disease Group Register for randomized trials and enquiry from authors of trials and other experts in the field. The most recent search was conducted in June 1999. Selection criteria: Types of studies: randomized trials Types of participants: adults with a diagnosis of ALS Types of interventions: treatment with riluzole or placebo Types of outcome measures: Primary: per cent mortality at 12 months with riluzole 100 mg Secondary: per cent mortality as a function of time with 100 mg and with all doses of riluzole, scales of neurologic function, quality of life, muscle strength and adverse events. Data collection and analysis: We identified two randomized trials. Each reviewer graded them for methodological quality. Data extraction was performed by a single reviewer and checked by the other two. We obtained some missing data from investigators. We performed meta-analyses with RevMan software using a fixed effects model. Main results: The two eligible trials included a total of 794 riluzole treated patients and 320 placebo treated patients. The methodological quality was acceptable and the trials were easily comparable. There were significant differences between the riluzole and placebo groups of both trials, in terms of the primary outcome measure, which was per cent mortality at 12 months with the 100 mg dose of riluzole. The odds ratio for the combined studies was 0.57 (95%CI 0.41 to 0.80) at 12 months. In the secondary outcome measures, there was a survival advantage with riluzole 100 mg at six, nine, 12 and 15 months, but not at three or 18 months. Pooled data from the 50, 100 and 200mg dose groups in the larger trial showed a lower per cent mortality with riluzole compared to placebo only at 12 months (odds ratio (OR) 0.64, 95% CI 0.47 to 0.88). There was no beneficial effect on bulbar function, or muscle strength. There were scant data on quality of life, but patients treated with riluzole remained in a more moderately affected health state significantly longer than placebo-treated patients (weighted mean difference (WMD) 35.5 days, 95% CI 5.9 to 65.0). A threefold increase in serum alanine transferase was more frequent in riluzole treated patients than controls (WMD 2.65, 95% CI 1.51 to 4.65). Reviewers' conclusions: Riluzole 100 mg per day appears to be modestly effective in prolonging survival for patients with ALS. Citation: Miller RG, Mitchell JD and Moore DH. Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) (Cochrane Review). In: The Cochrane Library, 1, 2001. Oxford: Update Software. ==================================== To The ALS/MND Research Mail List: TO BE ADDED TO LIST: Please email me at whubben@earthlink.net, *** FROM THE EMAIL ADDRESS YOU WANT TO HAVE ADDED, *** with the word "add" in the subject line. That way I won't have to type in all the address information, which is difficult for me. It is my objective to make "The ALS/MND Research Mail List" a selective and useful source of ALS/MND-relevant research information for the ALS/MND community. I want to encourage all PALS, CALS, ALS/MND researchers, ALS/MND clinicians, and MDs working with ALS/MND patients to subscribe. I am also soliciting articles and abstracts to include in my mailings. Submissions must be highly relevant to the ALS/MND research community, must be from a credible source, and must include at least one researcher's name and location, so that interested parties have a way to get more information. Please be advised that the editor is not a medical doctor and "The ALS/MND Research Mail List" is not peer reviewed. This mail list is not intended to provide medical advice on individual health matters. Any such advice should be obtained personally from a physician. --------------------------- Will Hubben whubben@earthlink.net (3) ===== ALS Family Symposium ========== >From : "Pamela A. Cazzolli, R.N." Subject: ALS FAMILY SYMPOSIUM Date : Sun, 29 Apr 2001 17:26:11 -0400 May is ALS Awareness Month MDA understands that there are vitally important decisions and concerns for families living with Amyotrophic Lateral Sclerosis. The Northeast Ohio Chapter of the Muscular Dystrophy Association has planned an ALS Family Symposium. SATURDAY, MAY 12, 2001 MetroHealth Medical Center Cleveland, Ohio Rammelkamp Atrium, Room 170 9:45 AM: Registration 10:00 AM: Jacqueline Simcic-Becker, MDA Health Care Services Coordiator * Services provided by MDA, local resources * Financial planning information. 10:30 AM: Pamela A. Cazzolli R.N., ALS Nurse Consultant * Enhancing Mobility * Respiratory Management of ALS 11:30 AM: Dr. Nimish Thakore, Neurologist - The MetroHealth System * Developing a plan for living with ALS * Research Update 12:30 PM: Complimentary Lunch Please call the MDA office at 440-816-0916 to RSVP. After you call to RSVP, the MDA will send to you a confirmation and directions. ** Directions from I-77 in Cleveland: take W 490 to 71 South; get off at 25th Street Exit; turn left on 25th Street; turn right on Metro Health Drive; garage on left; go into main entrance of the Rammelkamp Atrium Building and to Room 170. MetroHealth Medical center is about 15 minutes from Cleveland Hopkins Airport. (4) ===== Axonal Regeneration in Rat Brain with chondroitinase ABC ========== Date : Mon, 30 Apr 2001 13:15:57 -0700 >From : Will Hubben Subject: Axonal Regeneration in Rat Brain with chondroitinase ABC Axonal Regeneration in Rat Brain with chondroitinase ABC http://neurology.medscape.com/reuters/prof/2001/04/04.24/20010423 scie001.html Axonal Regeneration in Rat Brain May Pave Way For Partial Repair of Spinal Cord Injury WESTPORT, CT (Reuters Health) Apr 23 - Treatment of rats with chondroitinase ABC following experimental division of central nervous system (CNS) axons facilitates axonal regrowth to their proper targets, according to a report in the May issue of Nature Neuroscience. "The first attempts at partial repair of spinal cord injuries are not far off," Dr. James W. Fawcett, from the University of Cambridge in the UK, told Reuters Health. "A project is already under way to design the protocols for the first spinal injury repairs in humans." Scars containing chondroitin sulfate-bearing proteoglygans prevent axonal regeneration after CNS injury in adult mammals, Dr. Fawcett and colleagues explain in the journal. Chondroitinase ABC can degrade these compounds and should reduce the growth inhibition attributed to them. Dr. Fawcett and his colleagues measured CNS axonal regeneration after nigrostriatal tract axotomy in untreated rats and rats that received repeated infusions of chondroitinase ABC to the injury site. Dopaminergic axons grew through the injury site of treated rats along the course of the original nigrostriatal tract and back to their original targets, the authors report. In untreated rats, however, axons failed to regenerate beyond the axotomy site. Immunohistochemistry results confirmed the long-distance regeneration of cut dopaminergic nigral axons in animals treated with chondroitinase ABC, but not in untreated animals. Additional studies demonstrated that chondroitinase ABC (but not penicillinase, a control protein) degraded chondroitin sulfate in the region where axonal regeneration was proceeding. "This result," the authors conclude, "suggests that the effects of chondroitinase ABC should be evaluated in other models of CNS injury, with the long-term intention of treating human spinal cord injuries." "The time over which this particular enzyme can be applied will be limited to a week or so, because it is a bacterial enzyme that provokes an immune response," Dr. Fawcett told Reuters Health. "This may be enough, when coupled with other treatments, to allow axons to traverse the most inhibitory parts of the glial scar." Dr. Fawcett concluded with cautious optimism: "Repairing a cord injury to the extent that patients can walk is not at present a realistic aim for most patients. However, many patients would benefit greatly from regeneration of axons over a few centimeters, allowing them to regain breathing or movement in their hands. Like all difficult and novel treatments, the first efforts will result in small improvements." Nat Neurosci 2001;4:465-466. --------------------------- Will Hubben whubben@earthlink.net (5) ===== re: Care Giver costs (ALSD845-5) ========== Date : Sun, 29 Apr 2001 15:54:20 -0700 >From : "Edward Anthony Oppenheimer, MD" Subject: Re: Care Giver costs Dear Sean & Kay Malone, Arranging needed care givers and the costs for paid caregivers is essential for success. Thus you raise issues that challenge us all. There is a lot of information on these issues. I shall make a few comments from my experience. Your local ALS support group may have additional information, as well as your local center for independent living. You certainly need to arrange help so you can stay strong and provide the over-sight and emotional support that Kay needs. For people who are receiving skilled home health or hospital care, a certain amount of homemaking and nurses aide assistance can often be provided by the home care or hospice agency (paid for by the health plan or Medicare). I am sure you are receiving this already, but more help may be possible. Don't hesitate to ask. Hospice often covers "respite" care too. Health plans vary as to whether they will cover on-going paid caregivers in the home to supplement the family. Many health plans have the experience that family members or friends can learn how to do the care at home; often better than nurses. They then do not cover professional nursing shift care in the home, but do provide visits to assess, monitor and teach. Some people have been very innovative in organizing and training very good volunteer helpers from their friends, church groups, and other organizations. When the person at home with ALS (PALS) needs help with all aspects of care and basic activities, then someone needs to be there all the time: 24 hours x 7 days. All caregivers must be caring, trained, and familiar with safety issues (what to do in case a problem occurs). For most people this will mean that paid caregivers are needed to supplement family members and others. Family caregivers need enough sleep, time to work and have other activities too. There are two basic options. [1] Select, hire and train people to help as personal care attendants. They do not need to be professionals but they must be caring, responsible, able to learn the care plan and demonstrate they can do it the way the PALS prefers. Community centers for independent living often can help you learn how to arrange PAS (Personal Assistance Services). [2] Search for ways to get financial and management help for this from your health plan or other community agencies. A medical social worker may be able to help you look into your options. I often compare PAS to finding help when you have a baby or young child at home and the parent(s) need to work. You try to select an excellent person and train them. My experience with our son, was that we had a number of people who did not work out before we found the right person who then stayed with us for more than ten years, becoming a loyal friend and part of the family. Each person's needs and preferences are unique. The cost involved is much less when you select and hire the person yourself, rather than use an agency; and you can be sure that the person is willing to do the care, household helping and accompany you outside of the home too. All best wishes, Edward A. Oppenheimer, M.D. Pulmonary Medicine Los Angeles, California Email: Eaopp@UCLA.edu (6) ===== Many Thanks ========== >From : Karma2155@aol.com Date : Thu, 26 Apr 2001 11:15:56 EDT Subject: Many thanks! My family and myself wish to thank everyone who contributes to this newsletter. We found this to be a great source of information and inspiration. My mother, Margie, 72 just passed away due to ALS. She died quietly and peacefully at home surround by all her children and grandchildren. She fought the good fight and always had a smile and an "I love you" for everyone who came into her life. I also want to recommend Hospice Care for anyone suffering with this disease. We learned that it is not necessary to wait to the very end to enlist their help. Just being diagnosed with a terminal disease qualifies you. They are the most caring and compassionate people you will ever meet. They care for every need of the patient and also of the family. No want or need is too small or too large for them. They do everything they can to see that the patient is comfortable. My mother did not struggle to breathe. They put a small patch behind her ear that dried up all the phlegm she had been struggling with for days. They did everything from bathing her daily to counseling my father and my family with patience and knowledge, answering every question we had. Although our battle with this disease is over we will continue to pray for all of you still in the struggle to survive. Even with all the time-consuming tasks and the depression of watching your loved one leave and your lives together dissolving, count each day still together as a blessing and know that although they may not be able to respond as we wish they could, they still can Hear, Understand and Love us. If anyone has any questions about our struggle with this disease you can reach us at : karma2155@aol.com or gerald2135@aol.com Our prayers and best wishes are with you all. === end of alsd 846 ===