=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #832 (05 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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: Human Growth Hormone (HGH) ALSD830) 2 .. Product Education Day 3 .. natural point - computer interface 4 .. Itchy 5 .. Dolores Weber 6 .. The Benefit 7 .. Treatment of ALS with pleconaril 8 .. 911 Support in the USA 9 .. ALS Press Release 10 . communications help needed 11 . therapeutics 12 . giving blood & ALS? (1) ===== re: Human Growth Hormone (HGH) (ALSD830) ========== Date : Mon, 2 Apr 2001 >From : "Barry W. Festoff" Subject: Re: ALSD830: Human Growth Hormone (HGH) >Has any had any experience with use of HGH to stop or cure ALS? >I understand Dr. Sam Baxas of Switzerland has had great success. Can >anyone confirm or deny this? He apparently also has office in Miami,Fl. A well-controlled study in 3 centers of recombinant hGH in ALS was carried out in the late 1980's and reported in 1993 as follows: Smith, R. A., Melmed, S., Sherman, B., Frane, J., Munsat, T. L., and Festoff, B. W. (1993) Recombinant growth hormone treatment of amyotrophic lateral sclerosis. Muscle & Nerve 16, 624-633. As stated in the abstract: Based on the known trophic effects of growth hormone (GH) on nerve and muscle 75 patients with ALS were treated for up to 18 months with synthetic human growth hormone (Protropin) or a placebo. The course of ALS was assessed serially using a quantitative (TQNE) neuromuscular and manual exam (MRC) and laboratory chemistries. Average insulin-related growth factor (IGF-I) values increased from 1.2 to 2.3 U/mL in the treated group. Surprisingly, serum insulin levels did not increase. Hyperglycemia was noted in only 2 patients of the 38 patients receiving hGH, and this resolved with cessation of treatment. Over the 12 months of treatment there were 11 deaths (6 controls, 5 treated). Survival analysis, performed approximately 12 months following cessation of treatment, did not reveal a difference between the treatment and placebo group. The TQNE scores declined inexorably in both the control and treated group. Retrospective analysis of the TQNE data indicated a poor prognosis for patients who lost arm strength early. A correlation between the TQNE and MRC scores was evident at early stages of motor unit loss, less so when muscle weakness was advanced. As in all potential treatments, caution should be exercised. Barry W. FESTOFF, M.D. Director, Neurobiology Research Lab (151), VA Medical Center Professor of Neurology and Pharmacology, University of Kansas Medical School 4801 Linwood Blvd. Kansas City, MO 64128 (816) 861-4700 x7079/7072 (816) 922-3375 FAX serpin@eagle.cc.ukans.edu e-mail http://www.kumc.edu/kcvamc/research/nbrl/ web page (2) ===== Product Education Day ========== >From : "Gonzalez, Gina" Subject: Product Education Day Date : Tue, 3 Apr 2001 University of Miami Kessenich Family MDA ALS Center Third Annual Product Education Day for Seniors and Persons with Disabilities DATE : Saturday, April 7, 2001 WHAT : A product education day for seniors and persons with disabilities in which the attendees can learn from different medical companies and health organizations whose mission is to better their quality of life. This event is dedicated to increase public awareness about the different types of help available to these persons as well as disseminating factual information about services and products. WHERE: Miami Beach Convention Center, Hall D 128-131, 1901 Convention Center Drive, Miami Beach, FL 33139 TIME : 12 p.m. to 4 p.m. COST : Free admission Ginna P. Gonzalez, RN, BSN, CGRN Nurse Director Kessenich Family MDA ALS Center 305 243 7400 1800 690 ALS1 Fax 305 243 1249 www.miami-als.org gina@waltek.net (3) ===== natural point - computer interface ========== Date : Tue, 03 Apr 2001 >From : Toni Diamond & Warren Schiffer Subject: natural point -computer interface I would like to point out a possible new source for computer interface. It is naturalpoint.com. They have a $99 dollar hardware/software package that, for now, is a windows only product. I'd like to ask the ALS community to check out the site, and if they are Mac users, to email requesting mac drivers to be made available. Just to be clear, we have not used the product yet, nor do we have any financial connection to it. It appears to be an incredibly affordable and useful package, bearing further investigation. Thanks, Warren Schiffer(CALS) (4) ===== Itchy ========== >From : HollyHoffy@aol.com Date : Fri, 16 Feb 2001 Subject: Itchy, Itchy, Itchy All I want to do is scratchy, scratchy, scratchy! I need a solution to constant underarm itching. Despite changing soaps and deoderant, using Balmex, Desitin and Gold Bond medicated lotion and wearing a cotton t-shirt under my satin pjs, I cannot get rid of the itching. I'm tortured by this yet there's no rash or redness; it's been going on at least 18 months. I'd scratch myself to a bloody pulp if only I could reach. Just recently it's began at my naval/waist area and just below. Ideas? Anyone? Thanks. (5) ===== Dolores Weber ========== >From : Kastju@aol.com Date : Thu, 5 Apr 2001 Subject: Dolores Weber My mother was Dolores Weber. She was diagnosed with ALS just last August. August 28, 2000 to be exact. Her first symptom was her speech just a year ago. During this past year, she lost the ability to talk, her left arm became useless, then her legs began to lose function. Just a few weeks ago, she said her right arm and hand were getting tired very easily. Mom was a fighter. She never gave up. She gave the rest of the family so much love--she had a smile for all of us every time we walked into her room. Mom passed away just 4 days ago. With all of the research that my family has looked into, we really expected her to have 2-5 years with us. Since her diagnosis, she only had 7 months with us. I was angry at first about the short time she had with us, but as I reflect, I don't think I would have wanted her to lie in a bed totally helpless for years. I don't think she would have wanted that either. She fought this disease with grace and courage. I would like to thank all of the people that helped to make her life manageable the past 7 months. This includes the University of Minnesota. Thanks for the pool of equipment that she was able to use. To just make a phone call and get a wheelchair or communication device was not expected. Thanks does not seem adequate enough. Thanks also to the ALS Association, Minnesota Chapter. Jennifer and Lisa: you were so patient with our many questions and frustrations. Lisa you saved us by coming out to explain ALS to Mom's entire family and neighbors. You did it again at Ebenezer. Thanks. And finally, thanks to the Ebenezer Covenant Care Center. You were so gentle with Mom, so patient with her when she couldn't tell you what she wanted. And so caring with her. She never expected hugs and kisses from the staff...you made her so happy to be cared for 24 hours a day. I must also say thank you also for caring for Dad. The rough days are ahead for him...how can you be married for 52 years without feeling some sort of great loss when your wife dies of a terminal illness? PALS: Don't give up the fight. Take time to enjoy your family. Caregivers: Don't grumble about the extra work. Yes, it is tiring. It is also so rewarding. God Bless you all...Sandy Judge (6) ===== the Benefit ========== >From : "skelpin" Subject: The Benefit Date : Mon, 2 Apr 2001 If you are in the Detroit area there is a benefit for ALS of Michigan and to assist a person with ALS (me) Please come for the fun! For Immediate Release: 3/28/01 313.JAC HOSTS A BENEFIT FOR ALS On SATURDAY, APRIL 14, at 9pm, 313.jac- upstairs from Jacobys will host a BENEFIT FOR ALS. ALS more commonly known as Lou Gehrigs Disease, Is a progressive, fatal motor neuron disease. It is named after baseball player Lou Gehrig, who first made the country aware of the disease. As of today, the cause, cure and means of control of ALS is unknown. In the U.S. alone, more then 5,000 people are diagnosed with ALS each year. In Michigan more then 1,000 people are living with ALS. The disease affects all people equally regardless of race, sex, ethnicity or socioeconomic position. It is always fatal. The benefit will raise funds for ALS of Michigan Inc. their mission is to improve life for ALS patients and their families whose expenses may cost in excess of $250,000 a year. In addition, they support research to manage and cure the disease. ALS is not a widely recognized disease as some, but everyone knows of someone affected by it. This benefit also hopes to raise ones awareness of ALS. Four local bands will be donating their time and talent for the cause. Performing will be JETTISON RED, RED SEPTEMBER, THE MUGGS and CALAMITY JANE. Along with a night of great rock and roll will be many raffle prizes donated by area bands, restaurants and merchants. The show starts at 9pm. There is a $10 cover charge. 313.jac is located upstairs from Jacobys at 624 Brush in Greektown around the corner from St. Andrews Hall. The clubs phone number is 313-962-7067. For more information on the benefit, please contact Dawn @ 810-776-5968. For more information on ALS of Michigan Inc. contact 1-800-882-5764 Thank you all, Sheila Kelpin (7) ===== Treatment of ALS with pleconaril ========== Date : Fri, 30 Mar 2001 >From : Will Hubben Subject: Treatment of ALS with pleconaril >From Darin Lilly: Neurology 2001; 56:691-695 ClinicaI/Scientific Notes Treatment of ALS with pleconaril Carl F. Ansevin, MD Northeastern Ohio Universities College of Medicine, St. Elizabeth Health Center, Youngstown, OH. Address correspondence and reprint requests to Dr. Carl F. Ansevin, 7417 South Avenue, Boardman, OH 44512; e-mail: cansevin@neoucom.edu Introduction Enteroviral RNA sequences were identified in spinal cords from 15 of 17 patients with ALS using reverse transcriptase PCR (RT-PCR). PCR products were localized in neuronal cell bodies within the gray matter by direct RT in situ PCR. A previous study reported enteroviral RNA sequences in spinal cords from 8 of 11 patients with ALS. We report a patient with ALS treated with pleconaril, an anti enteroviral drug. Case report A 76-year-old man noticed dyspnea and exercise limitation in October 1996. He had polio at age 3 affecting the right leg. Chest x-rays and CT showed atelectasis. Cardiac evaluation was negative. He had carbon dioxide retention (pCO2 50 mm Hg). Forced vital capacity (FVC), forced expiratory volume (FEV1 ), maximum voluntary ventilation (MVV), and total lung capacity were reduced, whereas FEV1 / FVC was normal. Negative inspiratory pressure was 30 cm H20 standing and sitting and 15 cm H20 when lying flat. Expiratory pressure was 60 cm H20. He was started on albuterol and home bilevel positive airway pressure (HiPAP). In March 1997 he noticed decreased grip and arm weakness. Examination in July showed weakness and atrophy in the arms with fasciculations in the arms, trunk, and legs. Biceps, triceps, and brachioradialis reflexes were 3+. Knee jerks and left ankle jerk were brisk 2+. Right ankle jerk was unobtainable with atrophy of the right lower leg. Left leg strength was normal. Hamstring muscles were tight. Sensation was intact. He had an altered gait with a special shoe for his smaller right leg. EMG showed fibrillations, positive waves, and fasciculations in all four extremities and thoracic paraspinal muscles. Recruitment patterns were moderately to markedly decreased with rapid-firing motor unit potentials (MUP) and moment-to-moment amplitude variation, large MUP, and increased polyphasics. Nerve conduction velocities were normal. Creatine kinase was 234 U/L. He had a monoclonal gammopathy, but no evidence of myeloma on bone survey and marrow biopsy. Cervical spine CT showed no evidence of spinal cord compression. Metal in his eye precluded MRI. CSF showed no cells and normal protein and glucose. CSF PCR and rectal and nasal cultures for enteroviruses were negative. Institutional Review Board, FDA Investigational New Drug approval for compassionate use, and appropriate informed consent for a trial of pleconaril were obtained. Over the 6 months prior to receiving pleconaril his FVC declined 3 to 4% per month despite riluzole. After his pulmonary function testing (PFT) in early March 1998, the patient developed a cough with whitish sputum, but no fever or chills. His lungs were clear. He was treated for a respiratory infection with doxycycline and his cough improved. After a 7-day course of pleconaril, urinalysis showed 25 leukocytes/high-power field with bacteriuria and he received ciprofloxacin for 6 days. FVC, FEV1, and MVV improved following treatment. PFT 4 months later also showed improvement. Timed walking improved. Grip strength on the right improved marginally, but force generation did not improve significantly in other muscle groups. Time reported on home HiP AP remained relatively constant. His rapid rate of decline resumed about 4 to 5 months after treatment. Approval for another trial of the medication was unobtainable. He died at home of respiratory failure about 11 months after treatment. No autopsy was done. Discussion The patient appeared to improve and plateau after treatment. How much improvement can be attributed to pleconaril or antibiotics, or both, is not clear. Sustained improvement 4 months after treatment cannot be attributed to antibiotics alone, implying that pleconaril may have temporarily improved the course of his illness. His PFT, age, and dyspneic presentation implied a poor prognosis. The course of ALS varies significantly between patients..,1 Briefplateaus and even transient improvements have been reported. However, the rate of decline in individual patients is generally relatively linear in the active phase. This patient's downhill course appeared to be temporarily altered and survival was longer than expected given his initial PFT. Pleconaril has a direct interaction with viral particles. If this drug is effective in altering the course of ALS, this implies that viral particles are active. However, intact or viable viral particles have not been demonstrated in ALS. Further work on the pathogenesis of ALS including innovative neurovirologic studies is needed. Conclusions from a single patient are difficult and further studies are needed. These results suggest that pleconaril deserves study in ALS. Acknowledgements The author thanks the patient's family, especially his wife and son, for allowing him to participate in this study, and Drs. Rebecca Bailey and John Giannetti. Dr. Harley Rotbart of the University of Colorado performed the PCR and cultures for enteroviruses and ViroPharma, Inc. (Exton, Pennsylvania) supplied the medication. Special thanks to Dan Ansevin for his helpful suggestions. (8) ===== 911 Support in the USA ========== >From : "Brian Toms" Subject: 911 Support in the USA Date : Mon, 2 Apr 2001 If you live in an area that has the 911 emergency phone number system, you may be able to 'register' your number with the local fire station or police department. I was able to do this in Oklahoma City. What this really means is that all three services - fire, police and ambulance - will be dispatched if the caller is unable to be understood (for instance my wife is very difficult to understand on the phone and in an emergency would be impossible to understand). This 'registration' can give you the peace of mind that they will not ignore the call as a prank. I hope this can help others. Brian Toms btoms@prodigy.net (9) ===== ALS Press Release ========== >From : "Mike Myers" Subject: ALS Press Release Date : Thu, 5 Apr 2001 *** Stem Cells Cure ALS-Like Disease *** Yesterday, the Journal of the American Medical Association published a report in which researchers used stem cells to cure an ALS-like disease. Read Dr. Myers review of this study at http://store.yahoo.com/nu-care/stemcelcural.html. Lynn Myers MD is a pathologist and author of "Creatine Answers for ALS". (10) ===== communications help needed ========== >From : Lopeswife@aol.com Date : Wed, 4 Apr 2001 Subject: Re: I really need some recommendations for assistive communication devices and what would work best for a PALS with no voice, and only eye and a small amount of finger movement. He would like to access web, as well as have some sort of communication other than us lip reading. Also, what device is there that will let him control the t.v, lights, etc. Thanks in advance for your help. Betsy (11) ===== therapautics ========== >From : CheriNQ@aol.com Date : Thu, 5 Apr 2001 Subject: Did you see this article? I stumbled on it and it is interesting. http://www.wfnals.org/Articles/therapeutics.htm Cher (12) ===== giving blood & ALS? ========== >From : "glenn & judy martin" Subject: Date : Wed, 28 Feb 2001 MY NAME IS JUDY, I LOST MY SECOND SISTER FROM ALS IN NOV. 2000. I THINK OF HER EVERY DAY AND YESTERDAY IT HIT ME LIKE A TON OF BRICKS. SHE ALWAYS LIKED TO HELP PEOPLE OUT & ONE OF THE THINGS THAT SHE DID WAS GIVE BLOOD AND HAS GOT ON MY CASE FOR NOT DOING THE SAME. BUT I KNOW THAT THEY ARE SUPPOSE TO CHECK THE BLOOD BUT I KNOW THEY DON'T ALWAYS DO A GOOD JOB OF IT. SHE DID NOT KNOW SHE HAD ALS WHEN SHE WAS GIVING BLOOD. I WAS JUST WONDERING IF PEOPLE WHO GOT HER BLOOD IF THEY HAVE A CHANCE TO GET THIS TERBILE ALS FROM THE BLOOD THAT SHE HAD GIVEN. AFTER LOSEING TWO IN MY FAMILY IS IT SAFE FOR US TO GIVE BLOOD. YOURS TRUELY, JUDY === end of alsd 832 ===