=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #838 (15 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Brick by Brick - March/April 2 .. Bay Area Chapter "Walk to D'Feet ALS" 3 .. re: itching 4 .. Learning to Fall 5 .. NORD 6 .. ALS and assisted communications 7 .. web site resources for medical hoaxes 8 .. some questions 9 .. ALS Support Group - Milton, MA 10 . re: alternative treatments (1) ===== Brick by Brick - March/April ========== >From : "ALS March of Faces" Subject: ALS March of Faces March/April "Brick by Brick" Newsletter is : now available Date : Fri, 13 Apr 2001 The March/April Edition of Brick by Brick is now available. You can access the newsletter from our homepage at: http://march-of-faces.org and Click on the "Brick by Brick" Newsletter Menu Button In This Month's Issue: ALS AWARENESS: WELCOME-Our Newest Community Members Les Turner ALS Foundation & Motor Neurone Disease Association ALS NEWS, RESEARCH AND INFORMATION: Semi-Annual PALS Awards To Be Given Sporadic ALS Study still seeking recruits! Company Finds Stem Cell Source in Placentas Stem Cells Step Closer to the Clinic Paralysis Partially Reversed in Rats With ALS Decreased platelet glutamate uptake in patients with amyotrophic lateral sclerosis. Gene Therapy Used in Alzheimer's Treatment Layton BioSciences' Neurons Enter Phase IIb Stroke Trial Mechanism of Huntington's Disease Cellular Toxicity Revealed Small Molecule May One Day Help Brain Disorders ALS ADVOCACY: National ALS Advocacy Day ALS FUNDRAISING AND EVENTS: Hate to Cook? Love To Cook? Pampered Chef Fundraiser Helps YOU and ALS! COLUMNS & REGULAR FEATURES: The View From Here-Rules for Caregivers Caregiver's Corner-Brace Yourself! What's Cookin'?-Chop It Up! Ravings from Down Yonder-Too Good to Be True Rev's Ramblin's-Easter Inspirations Let's Talk-NEW Head-style mouse, inexpensively priced ALS March of Faces Banner Calendar-Where in the World Are You? (2) ===== Bay Area Chapter "Walk to D'Feet ALS" ========== >From : "Tony Adessa" Subject: Bay Area Chapter "Walk to D'Feet ALS" Date : Wed, 28 Mar 2001 Date : Sunday, June 24th, 2001 Time : Registration at 9:00 a.m., Walk at 10:00 a.m. Place : Bandstand in Lakeside Park, which encircles Lake Merritt in : Oakland Of Note: Walk is 1 non-timed lap - roughly 3 miles - around the lake. The route is completely wheelchair-accessible, having been tested by a wheelchair-bound PAL. Requirements: Everyone invited to participate. No registration fee, but every Walker must contribute a personal minimum of $15, and try to raise a minimum total of $150. Teams encouraged!! Contact Tony Adessa for more information and registration forms at (415) 392-2572, or email: tadessa@alsabayarea.com. Free Kickoff Luncheon: April 18th at the Clarion Suites Hotel in Oakland. Come meet team captains and other walkers as we fire up for the big event! Sincerely, Tony Adessa Events & Public Awareness Manager (3) ===== re: itching ========== >From : "TB Carter" Subject: itching Date : Sat, 7 Apr 2001 My husband had a problem with severe itching. After reading about aromatherapy oils and occult yeast infections, I mixed and used regularly (daily after drying following his shower) tea tree oil (10 drops) plus lavender oil (10 drops) in about 25 mls (~1 ounce) almond oil as a carrier. If you use it on perineal area (or the skin gets pink) dilute it a tad more. Just a few drops of the mix was all it took to stop, then prevent, the itch. Brenda (4) ===== Learning to Fall ========== >From : "Philip Simmons" Subject: PALS on the Radio Date : Tue, 6 Mar 2001 Dear Friends: New Hampshire Public Radio recently aired an interview with me, focused on my book, "Learning to Fall: The Blessings of an Imperfect Life," which shares the insights I've gained through living with ALS for the past eight years. The interview can be heard through the New Hampshire Public Radio website, by going to: http://www.nhpr.org/audio/fp/fp021301.ram (requires Real Player software or equivalent) best wishes to all, Philip E. Simmons, Ph.D. homefarm@worldpath.net "Learning to Fall: The Blessings of an Imperfect Life" Read an excerpt at www.learningtofall.com Order from Xlibris: www.xlibris.com/learningtofall.html Or by phone: 1-888-795-4274 (during business hours, Eastern time) Also available at www.amazon.com or through your favorite bookstore $16 softcover, ISBN: 0-7388-4022-X $25 hardcover, ISBN: 0-7388-4021-1=20 $10 e-book 20% of proceeds to the ALS Association (5) ===== NORD ========== Date : Mon, 19 Mar 2001 >From : Jamie Weissburg Subject: National Institute for Rare Diseases (NORD) The National Organization for Rare Disorders (NORD) is seeking volunteers to write to their senators and representative in Congress, on their own time, using their own stationery, regarding the future of the more than 25 million men, women and children in the United States who have rare diseases (including ALS). NORD is the only organization of its kind--a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. Thousands of affected individuals and their families--as well as support groups, health care and human service professionals, and advocates for people with rare disorders and disabilities--rely on NORD's assistance and leadership. A rare or "orphan" disease affects fewer than 200,000 people in the United States. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans. If you are interested in volunteering, please read the attached documentation. Should you have any questions, please contact Diane E. Dorman, NORD Senior Director for Public Policy, at (301) 421-0018 or via email at ddorman@rarediseases.org . -- Les Turner ALS Foundation 8142 N. Lawndale Avenue Skokie, IL 60076-3322 Phone: 847-679-3311 Fax: 847-679-9109 www.lesturnerals.org (6) ===== ALS and assisted communications ========== >From : BRomich@aol.com Date : Mon, 8 Jan 2001 Subject: Re: AAC I thought readers would be interested in the following question and reply that appeared on a listserve for speech-language pathologists. Barry Romich ============ >From : Gillian Robinson [r_gillian@hotmail.com] Sent : Saturday, January 06, 2001 9:13 PM Subject: ALS COMMUNICATE: Discussion Mailing List for Speech Professionals - http://communicative.homestead.com/index.html I was hoping for some advice in the treatment of a 42 year old client who has recently been diagnosed with ALS. Currently this client is experiencing dysarthria characterized by hypernasality, nasal emission, and slurred speech. Respiratory support for speech is reduced and some vocal hoarseness has been observed. This client has also been diagnosed with oro-pharyngeal dysphagia. I am seeing this client through a home-care agency and resources are limited. Therapy has just been initiated and so far we've begun addressing breath support and coordination for speech, with instruction of abdominal breathing, optimal breath group, and exaggerated articulation. Some instruction around resonance has been included, mainly to focus on contracting the velar muscles for oral plosives. My client has shown improved intelligibility when using these strategies. It is unlikely that this client will receive therapy in any other setting unless hospitalization occurs. In order to provide the best treatment to this client my questions are: 1. Are there preferable/alternative strategies for managing this client's dysarthria 2. I would like to initiate a referral to an Augmentative communication clinic for this client - would this be appropriate at this time 3. Would a velopharyngeal prosthesis to manage hypernasal resonance be appropriate for a client with this diagnosis 4. Do you know of any good research links, resources This is my first experience working with a client with ALS in the early stages. Any advice would be greatly appreciated!! -----Response----- Subject: RE: ALS Date : 1/7/01 4:11:33 PM Eastern Standard Time >From : khill@edinboro.edu (Katya Hill) Gillian, I felt that a response to your request for suggestions regarding your client with ALS offered a beneficial break from working on my research this afternoon. First, I would like to suggest that you make the referral for an AAC assessment as early as possible. This provides greater opportunity and time for the individual and other team members to become informed of and familiar with possible AAC technology solutions before the onset of the significant challenges associated with ALS. Second, I recommend that you use evidence-based practice as an approach to the recommendation of any AAC strategies. Two years ago I presented a paper at ASHA of a case study on an individual with ALS documenting the amount of time needed to become a functional communicator using his AAC system. For the study, he was using Unity 128 on a Liberator. The participant in my study was very proactive in seeking out AAC information before significant speech and motor challenges occurred and had the time to learn a system before needing to be dependent on voice output. Using language activity monitoring (LAM), we collected language sample data that showed he was able to carry on an interactive conversation using spontaneous novel utterance generation (SNUG) in 15 hours of training. This evidence on amount of training time for Unity 128 is consistent with the subsequent data I have been collecting on adult users. Since that research study, two new vocabulary application programs have been introduced to the market. These are AQLS (Adult Quick Learning System) and Word Power. Vocabplus would make a third. These programs are considered an alphabet-based language representation method (LRM) termed orthographic word selection. The programs also provide for use of the other approaches associated with an alphabet-based LRM which are spelling and word prediction. I have been collecting performance data evidence to document progress on two clients (one individual with ALS, the other with a TBI) using AQLS. Both women were able to learn AQLS in one hour well enough to engage in interactive communication in their respective environments. I used language sample data from several augmented communicators to evaluate the vocabulary effectiveness and efficiency of AQLS over other available programs as one of many considerations before initiating intervention with AQLS. I was not as interested in evaluating the performance based on frequently used single words, since I knew most programs used word frequency lists to select programmed core vocabulary. Rather I looked at the collocations and verbal phrases used in the language samples. AQLS out performed other orthographic word selection programs by reducing the need to spell or offering keystroke savings to access this type of vocabulary. This, along with other overlay features, is extremely helpful once the individual may need scanning as an access method. For my doctoral dissertation research I gathered forty language samples from adults with CP who rely on AAC, using LAM. The early analysis of communication rate as a function of the language representation method being used suggests that word prediction is only slightly (<40%) faster than spelling. However, semantic compaction is around four (4) times as fast as spelling. This is apparently why these individuals choose to use semantic compaction for around 90% of their communication. This would appear to confirm that the different language representation methods achieve different outcomes. Therefore, I'm not sure that I would ever strongly consider an AAC system for an individual with ALS that does not include some access to semantic compaction. I was very grateful to have had the opportunity to become involved with the three individuals I highlighted in this response as well as the augmented communicators who have been so supportive of performance measurement. They have exemplified why the goal of AAC is vital to keep in mind when faced with decisions about the recommendation of AAC strategies. None of these individuals should have settled for anything less than having the most effective communication possible. The performance evidence supports what was possible and achieved. Thanks for your consideration, Katya (7) ===== web site resources for medical hoaxes ========== >From : Ramune Kubilius ( r-kubilius@NWU.EDU ) Sent : Wednesday, April 04, 2001 To : MEDLIB-L@LISTSERV.ACSU.BUFFALO.EDU Subject: REF: 2 web site resources for medical hoaxes The April 2001 Reader's Digest "News of Medicine" short article on "E-Rumors" includes two web sites of possible interest to health sciences librarians. (The item was originally contributed by Nissa Simon in New Choices. ) CDC site-- Current Health Related Hoaxes and Rumors http://www.cdc.gov/hoax%5frumors.htm Don't Spread That Hoax http://nonprofit.net/hoax/default.htm Ramune Kubilius Collection Development / Special Projects Librarian Galter Health Sciences Library Northwestern University (8) ===== some questions ========== >From : "Joyce & Georg Marotte" Subject: Rilutek Cost Date : Tue, 6 Mar 2001 My mom has ALS. I am curious to know why the drug Rilutek costs so much ($800 a month)? Also, has anybody out there had any communication problems or any trouble with their neurologist, nurse, or clinic? Did you complain? What happened then? What did you do to find closure or peace? Thank you. Joyce. (9) ===== ALS Support Group - Milton, MA ========== >From : KatieCath@aol.com Date : Fri, 13 Apr 2001 Subject: Support Group posting ALS SUPPORT GROUP MEETING NOTICE The ALS (Lou Gehrig's Disease) Milton Support Group Meetings will be held the 3rd Wednesday of every month from 7:00 until 8:30 p.m. at Milton Healthcare Facility; 1200 Brush Hill Road; Milton, MA Please join us Date : Wednesday, April 18, 2001 at 7:00 p.m. Topic: Home Modification & Equipment Video: "A Picture is Worth A Thousand Words", Phil and Mary Glenn, from Texas, made a professional video that focused on home adaptions and the equipment that they used. Support Group meetings are for people with ALS, their familes, friends and caregivers. Directions: >From Boston: Take Route 93 South (Southeast Expressway) to Exit 2B-Route 138 North/ Milton (At the junction of Route 3 and 93 be sure to bear right) See Below >From Cape Cod: Take Route 3 North to Exit 20-Route 93 to 95 Dedham (formerly Route 128) to Exit 2B-Route 138 North/Milton. See Below. >From Rhode Island: Take Route 95 North to Route 93 South (formerly 128) to Exit 2B-Route 138 North/Milton. See Below. >From North: Take Route 95 South (also known as Route 128), connecting to Route 93 North. DO NOT take Route 95 SOUTH when it bears off to the right. Take Exit 2B-Route 138 North/MIlton. At the end of exit 2B, bear right onto 138 North. Drive past the Blue Hills Ski Area and the Trailside Museum. Bear right at the green sign "Canton Avenue". Take the next left onto Brush Hill Road. For more information contact Judy Teplow, Director of Patient Services at (781)326-8884. New participants must register. (10) ===== re: alternative treatments ========== >From : Bernie Windham Subject: re: alternative treatments Date : Thu, 22 Mar 2001 >None of the references or labs listed by Windham offers any cure, >amelioration, or effective treatment for ALS. W Sampson I personally know the people involved in 3 cases cured or significantly better and several cases better. The sites I offered are mostly medical labs and clinics with a lot of credible medical study documentation on the site, and some of the clinics have case histories on the site. Should people believe clinical cases and documented peer-viewed medical studies, or someone's personal opinion who has no credentials regarding the issue that I am aware of. B.W. >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 What you say is simply not true. There are studies including double blind studies that I have seen that document the effectiveness of some homeopathic treatments, Homeopathy is widely used throughout the world, with millions of happy patients with the results. I know several. Were this not so, it would not be so widely used. Homeopathy is not something I follow or profess to be an expert on, or can vouch for, but the view of W. Sampson is extreme IMO. He expresses an opinion pretty strongly to not have ever provided any concrete evidence. Does he have comparable medical studies to offer countering the ones on the sites I provided? If so why weren't they sent to the journals publishing the medical studies I cited? B. Windham === end of alsd 838 ===