=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #840 (18 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. NCAHB and the Homebound Clafification Act of 2001 2 .. Cox-2 inhibition 3 .. Intrathecal Gamma Globulin 4 .. International Rare Disease Support Network 5 .. re: methylcobalamin (ALSD837) 6 .. warning with Creatine use 7 .. Injectable glutathione 8 .. ALS Awareness Month 9 .. MA Chapter ALSA - Symposium 2001 10 . ALS Advocacy Day in Wash. DC 11 . re: ALS or Lymes? (1) ===== NCAHB and the Homebound Clarification Act of 2001 ========== >From : DJayne23@aol.com Date : Wed, 18 Apr 2001 Subject: NCAHB and the Homebound Clarification Act of 2001 Dear PALS, CALS, and Friends, I have been a PALS for 13 years and founded the National Coalition to Amend the Homebound Restriction (NCAHB) in January. The Mission of NCAHB is to eliminate the current Medicare rule for the severely chronically disabled that states that in order to qualify for ongoing skilled nursing needs in the home, a patient must not ever leave the home except to go to the Dr, a weekly church service, or an adult day care center. I use a ventilator and a feeding tube to keep me alive and so require regular nursing care. Medicare had been paying for an in home nurse twice a month and a daily home health aide for personal care since I started using a ventilator 3 years ago. ALS has affected my mobility to the point that I can only twitch 3 fingers and it requires 2 people to get me up out of bed and attend to my personal care needs. Still because of modern technology, ADA making the community more accessible, and the great effort of my family and friends I am able to get out into the community and play an active role in the lives of my children, give speeches, and occasionally attend other community events. When a newspaper did a story on my life and reported my activities in the community, my home care agency cut off my services saying that Medicare would no longer pay for these services because I am obviously not "homebound". The current Medicare rule does not take into account what my level of physical disability is or how much effort it takes for me to actually get out of the house. This restriction adversely affects not only myself but all those who rely on skilled nursing needs in the home for survival. It requires that we virtually remain under house arrest and shut away in our homes in order to maintain the home care services we need for survival. The April 6 edition of People Magazine did a 6 page article about my efforts to change this unfair Medicare guideline. NCAHB has been working closely with Congressman Markey's office from Massachusetts. Earlier this month, Congressman Markey introduced the Homebound Clarification Act of 2001 (HR 1490) to congress. This Bill will eliminate the homebound restriction from the Medicare guidelines for people like myself who are chronically and severely disabled and have an ongoing skilled nursing need. The passage of this Bill would free those in my condition to play an active role in community life while retaining the home care services we need to survive. In May, I will be traveling from Atlanta to Washington DC where I will lobby for the passage of this Bill. I would like to invite you all to check out the official website for NCAHB to learn more about what we have accomplished thus far and how you can help our efforts. Also please sign our online petition to President Bush and Congress if you have not already done so. http://amendhomeboundpolicy.homestead.com/ We are currently collecting letters of organizational endorsement for NCAHB. To date over 30 organizations are supporting us but we need more! We would like to encourage all the PALS and CALS who read this to try to get your local ALSA chapters, support groups, and clinics to sign on as supporters and send in letters of endorsement to NCAHB in support of our efforts. ALSA of Georgia has endorsed NCAHB's efforts. It is extremely important that ALSA support HR1490 if it is to become a realiy. Everyone please call or email Steve Gibson and tell him HR1490 is an issue you want supported on ALS Advocacy Day. ALSA's Capital Office is located at 601 Pennsylvania Avenue, N.W., Suite 900, South Building, Washington, DC 20004. Ph: (202) 638-6997, Fax: (202) 638-6316 E-mail: Steve@alsa-national.org Thank you so much for your help and support in this worthwhile cause. Sincerely, David Jayne PALS NCAHB Founder (2) ===== Cox-2 inhibition ========== Date : Tue, 17 Apr 2001 >From : Will Hubben Subject: Cox-2 inhibition may be a valuable therapeutic avenue for the : treatment of ALS >Rrom Steve Fowler: 1: Ann Neurol 2001 Feb;49(2):176-85 Increased expression of the pro-inflammatory enzyme cyclooxygenase-2 in amyotrophic lateral sclerosis. Almer G, Guegan C, Teismann P, Naini A, Rosoklija G, Hays AP, Chen C, Przedborski S Department of Neurology, Columbia University, New York, NY 10032, USA. [Medline record in process] Mutations in the copper/zinc superoxide dismutase (mSOD1) gene are associated with a familial form of amyotrophic lateral sclerosis (ALS), and their expression in transgenic mice produces an ALS-like syndrome. Recent observations suggest a role for inflammatory-related events in the progression and propagation of the neurodegenerative process in ALS. Consistent with this view, the present study demonstrates that, during the course of the disease, the expression of cyclooxygenase type 2 (Cox-2), a key enzyme in the synthesis of prostanoids, which are potent mediators of inflammation, is dramatically increased. In both early symptomatic and end-stage transgenic mSOD1 mice, neurons and, to a lesser extent, glial cells in the anterior horn of the spinal cord exhibit robust Cox-2 immunoreactivity. Cox-2 mRNA and protein levels and catalytic activity are also significantly increased in the spinal cord of the transgenic mSOD1 mice. The time course of the spinal cord Cox-2 upregulation parallels that of motor neuronal loss in transgenic mSOD1 mice. We also show that Cox-2 activity is dramatically increased in postmortem spinal cord samples from sporadic ALS patients. We speculate that Cox-2 upregulation, through its pivotal role in inflammation, is instrumental in the ALS neurodegenerative process and that Cox-2 inhibition may be a valuable therapeutic avenue for the treatment of ALS. PMID: 11220737 ==================================== 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) ===== Intrathecal Gamma Globulin ========== >From : Billie Jauss Subject: Date : Wed, 18 Apr 2001 >From : ALS Therapy Development Foundation: Subject: Intrathecal Gamma Globulin Because of the intense interest in an earlier posting on the use of Intrathecal Gamma Globulin (IGG) as a treatment for ALS, we wanted to provide this update on our ongoing investigation of the therapy. While we are still not in a position to assess the effectiveness of Intrathecal Gamma Globulin as treatment, ALS-TDF believes there is sufficient merit to the approach for us to begin a substantial and immediate investigation. To accomplish this we have taken the following steps: - We are testing human IGG in the SOD1 mouse model - We have provided a grant to Dr. Moreira to help him collect information on patients under his care and work with us to evaluate the treatment - Sean Scott of ALS-TDF traveled to Puerto Rico to interview patients who received the treatment and to collect independent information - We are developing a clinical protocol for the treatment of ALS based on the biology of ALS and possible methods of action of gamma globulin Gamma Globulin is a very complex treatment and its exact mechanism of action is unknown. There are several possible ways it could impact ALS including deactivation of certain microglia receptors as well as the modification of antibody signaling. Microglia are a subcomponent of the immune system that is located in the brain and responds to injury. There is evidence that they are activated in ALS and they may be involved in the pathology of the disease. Gamma Globulin can also have anti- inflammatory effects. Please note that several clinical trials have already been completed on the use of Intravenous Gamma Globulin in ALS and they found no effect. Because Gamma Globulin does not cross the blood brain barrier efficiently, it is possible that intrathecal delivery offers benefits where the earlier intravenous trials did not. We are aggressively working to answer these questions. Dr. Moreira and ALS-TDF are also concerned about the possibility of scar tissue and infection resulting from multiple spinal punctures. Longer-term options are being investigated including spinal pumps or brain reservoirs, which could make chronic delivery safer and easier. We will pass on new information as it becomes available. ALS-TDF is committed to making worthwhile treatment available to patients. We promise that we will make this information available as quickly as possible to make it understandable, and accessible if it proves to be a promising therapy. For more information on the ALS Therapy Development Foundation please visit our website at www.als-tdf.org. For questions regarding research please contact Billie Jauss, Research Coordinator bjauss@als-tdf.org Billie Jauss Research Coordinator ALS Therapy Development Foundation 44 Glen Avenue Newton, MA 02459 617.796.8826 ext. 36 617.796.9652 Fax bjauss@als-tdf.org www.als-tdf.org (4) ===== International Rare Disease Support Network ========== Date : Wed, 18 Apr 2001 >From : FS Zollmann Subject: HUM-MOLGEN News Alert - April 18, 2001 Internet resources in Human Genetics - International Rare Disease Support Network (IRDSN) http://hum-molgen.de/bb/Forum5/HTML/000037.html (5) ===== re: methylcobalamin (ALSD837) ========== >From : Wisampson@cs.com Date : Mon, 16 Apr 2001 Subject: Re: >Some supplements that may be beneficial to ALS people are > > 1.. Coenzyme Q10, etc. etc. PALS are advised not to take many supplements without evidence of effectiveness. Many materials known to be or advertised to be anti- oxidants are paradoxically pro-oxidants in the body. The chemistry is complex, known as Fenton chemistry (Heber-Weiss reaction) and can be found in Seminars in Hematology in articles by Paul Saltman, PhD in 1989. They include micrographs of the oxidant effects of vitamin C on red cells and hemoglobin. ALS does not need more oxidation. PALS may also be warned about physicians who would recommend the list of supplements in the ALSD 837 note. Such recommendations may reveal lack of knowledge.. WSampson (6) ===== warning with Creatine use ========== Date : Tue, 17 Apr 2001 >From : M Harrold Subject: warning with Creatine use Dear PALS: I went to GNC to buy Creatine supplement. The guy there was very informed (for a muscle head). We talked for a bit about taking the Creatine and he warned me about taking the supplement with any juices. A health guide sold at the store warned that Creatine turns into Creatinine when used with orange juice. Evidently the unwanted compound is harmful. I am no nutritionist or dietician, and I'm going by memory on the above information. But I would warn users to take Creatine by itself, at least 1 hour before and after consuming any Vitamins and juices. If any expert on our list knows if this is accurate please expound. In the meantime, we should all be careful. If anyone is asking, I believe the Creatine increases energy levels. The stuff I take is Cell-Tech (big bucket - 7 lbs about $70). This brand has 10 g of creatine and 200 mg of alpha lipoic acid included per serving which is 1 less pill to take. Some people have told me creatine does little for them, but it seems to help me. On a different note, I have noticed that if I sleep on my back, my breathing is labored with short shallow breaths. I've slept that way for years, but lately I'm concerned that late at night, maybe I'm not getting enough air flow to properly oxygenate the blood. Anyway, I realized a week ago that if I sleep on either side, my breathing is deeper and more normal. Since I've been sleeping that way, it seems to help. This is a personal observation and no respiratory professional has advised. But I think it may something to be aware of. Take care my friends- Mike (7) ===== Injectable glutathione ========== >From : GEEZERGOV@aol.com Date : Sun, 15 Apr 2001 Subject: Injectable glutathione I AM INTERESTED IN A SOURCE OF INJECTABLE GLUTATHIONE. IT WAS MENTIONED IN A BACK ISSUE OF THE DIGEST AS BEING HELPFUL. I WOULD LIKE TO TRY IT. I WOULD APPRECIATE HEARING FROM ANYONE USING IT. THANK YOU. BILL DEHN geezergov@aol.com (8) ===== ALS Awareness Month ========== >From : "Bobbi Jacobsen" Subject: ALS Awareness Month Date : Wed, 18 Apr 2001 YES!!! May is still ALS awareness month. Lobbing will take place, on Capitol Hill on May 17. For more info, contact your local chapter or visit ALSA's web site: http://alsa.org/ For PALS participation events check out the following web sites: ALS March of Faces: http://www.march-of-faces.org Ride for Life: http://www.rideforlife.com (9) ===== MA Chapter ALSA - Symposium 2001 ========== >From : BTep100@aol.com Date : Mon, 16 Apr 2001 Subject: MA Chapter ALS Association-Symposium 2001 MA Chapter ALS Association-Symposium 2001 Reminder-Please register for Symposium 2001 by Friday, April 20th. We would like an accurate count. Please call 1-800-258-3323. Dr. Merit Cudkowicz and Dr. Robert H. Brown will be focusing on research and Dr. David Chad, Dean Hess (respiratory therapist) and Suzanne Danforth (speech and language pathologist) will discuss disease management. There will be plenty of time for questions. Exhibitors include Clarence E. Smith (respiratory therapist), Design-Able (medical supply company), physical therapists from MGH (demonstrating exercises), MDA (nonprofit serving neuromuscular diseases), Spaulding Rehabilitation Hospital Assistive Technology Center, Whole Person Health Multidiscilinary Holistic Clinic (therapist, nutritionist, massage therapists), SHINE (information on health insurance options), Houseworks (unique network of practical services), Community Health Charities, etc. (10) ===== ALS Advocacy Day in Wash. DC ========== >From : "ALSA Evergreen Chapter" Subject: ALS Advocacy Day in Wash. DC Date : Wed, 18 Apr 2001 I would love to take letters from families and people who are touched by ALS and live in Alaska, Hawaii, Idaho and Oregon to Washington DC with me on May 17th, National ALS Advocacy Day. I plan on visiting the offices of (or meet with) the Senators of Alaska (Sen. Ted Stevens (R) & Sen. Frank Murkowski (R)), Hawaii (Sen Dan Inouye (D) & Sen. Daniel Akaka (D)), Idaho (Sen. Larry Craig (R) & Sen. Michael Crapo (R)) and Oregon (Sen. Ron Wyden (D) & Sen Gordon Smith (R)). At that time I would like to hand deliver letters from their own constituents explaining their views on the issues important to ALS patients, families and caregivers. Sample letters are available. Word documents can be sent to me attached to email, or you may mail letters to: Rebecca Moore The ALS Association Evergreen Chapter 6627 S 191st Pl Suite F-106 Kent, WA 98032 TEL 425-656-1650 email: info@alsa-ec.org website: www.alsa-ec.org (11) ===== re: ALS or Lymes? ========== >From : Bernie Windham Subject: re: ALS or Lymes? Date : Tue, 17 Apr 2001 >The safest advice is to be sure your physician is a neurologist, and if >you have not seen one, ask for a consultation. If the physician is a >neurologist and there is no improvement on antibiotics, the diagnosis of >ALS should be confirmed by the doctor or by other opinions. There should >not be a great confusion over which disease you have. WSampson MD The Medical Lab Affinity Labeling, www.altcorp.com has a reliable test for ALS that can aid in diagnosis. They also have information that has been useful to some in treatment. I know of several clinics who say they've had some success at treating some cases of ALS. My sister is a Board Certified Neurologist but I don't know of any ALS patients that she has cured, or of any ALS patients cured by any neurologists. Are you aware of some?? Do neurologist have a proven higher rate of cures with Lyme Disease than other types of doctors or practitioners? B. windham === end of alsd 840 ===