=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #834 (08 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. an appeal for support 2 .. Help about disability policies 3 .. re: Institute for Molecular Medicine protocol 4 .. ALSA Support Group Naples/Marco Island 5 .. ALS/MND & Pregnancy 6 .. MND Scrapbook 7 .. Les Turner ALS Foundation Web Site Updates 8 .. My Mother 9 .. ALS or LYMES? 10 . MA Chapter ALSA Seeking Support Group Leader (1) ===== an appeal for support ========== >From : "Luca Coscioni" Subject: Date : Sun, 8 Apr 2001 Please, go to http://195.62.53.42/luca/appeal_i.php Orvieto-Brussels, February 2001 Dear Professor, I am writing to you, and to many other distinguished scientists, to invite you to take part in a common battle. My name is Luca Coscioni. I have a degree in Economics and an MA in environmental economics. I have taught Economic Policy at the University of Viterbo. I am directly involved in the battle for the freedom of science and of therapy, with regard in particular to research into embryonic staminal cells. Such research is currently prohibited in Italy, just as hope is prohibited for the millions of people suffering from serious, widespread diseases for which there is currently no effective cure. If you could meet me, you would not be able to hear my voice. Five years ago I was struck by amiotrophic lateral sclerosis, an incurable neuromuscular disease which makes those who suffer from it paralytic and unable to speak with their own voice. In order to communicate I use a computer with a voice synthesis programme, the system used by the famous English physicist Steven Hawking, who suffers from the same disease. Amiotrophic lateral sclerosis, which strikes one in 10,000 people, is best avoided, to say the least. Unfortunately, however, we still do not know the causes that bring it about, which means that it is impossible to predict who will be affected and why. For 2001 all we know is that there will be several hundred new cases of amiotrophic lateral sclerosis in Italy, and a total of several thousand Italians, give or take one or two, will be battling against the disease. There is, however, a possibility that amiotrophic lateral sclerosis could be cured with the use of staminal cells. Scientific research will tell us if and how. In Italy, this possibility unfortunately seems to be denied to the thousands of people who, like me, fight for survival every day. Why? Because of the interference of the Catholic Church, which is, as everyone knows, opposed to therapeutic cloning and to the use of surplus embryos for the purposes of research. Embryos, that is, which are in any case destined to be disposed of, and which could, if they were used, save the lives of millions of people. According to the Dulbecco Report on staminal cells, which contains the recommendations of the 25 experts appointed by the Minister of Health to examine the issue, 10 million Italians could be treated with therapies based on these cells. People suffering from a range of diseases, including Alzheimer's disease, Parkinson's disease, amiotrophic lateral sclerosis, spinal muscular atrophy, traumatic lesions to the spinal marrow, muscular dystrophy, tumours and leukaemia, diabetes, heart attacks and strokes. People who continue to suffer as they anxiously await a law on therapeutic cloning. While the United States and Great Britain approved therapeutic cloning six months ago, in Italy we are still discussing whether it is ethical or not to use frozen embryos close to their deadline for use, if not already unusable. They can be destroyed, it seems, without causing any scandal, but they cannot be put to good use for research. And thus, while experimentation will begin next spring in the United States and Great Britain, in the form of pre-clinical studies, Italy will be enveloped by the fog of demonisation and disinformation. And in this thick fog it will not be difficult for the government and the majority to continue to ban therapeutic cloning, among other things, thus denying hundreds of thousands of Italians a concrete hope of finding a cure, or forcing them to travel to other countries in a shameful form of "health tourism". In the face of this disastrous scenario, it is absolutely necessary to be present in Parliament. The Lista Bonino has drawn up a people's bill (of which I am honoured to be the first signatory) containing laws on the subject of medically assisted procreation and research on human embryos. Fighting year after year, month after month, day after day, hour after hour against the disease that has struck me has not given my life a meaning. Diseases, and the suffering they bring, never have any meaning. I am giving meaning to my life by myself, by living it, as I am allowed to live it. By loving, hating, and being involved in politics, which is one of my passions. This is why I have decided to stand in the general election, together with Emma Bonino, in the electoral list that bears her name, to give a concrete form to the fight to defend the freedom of scientific research, the freedom to choose one's treatment, the freedom to choose how and when to die, in the case of incurable diseases marked by unbearable suffering and pain. In the civilised, advanced world, debate is born and develops around ideas. In Italy, on the other hand, debate is impossible, and prohibition is the order of the day. I am appealing to you, Nobel Prize winners and scientists, to ask for your support for a cause which is mine, but which is also and above all yours. I am a concrete example of how the right to life and the freedom of science are one and the same thing. If Italy continues to be the victim of anti-scientific obscurantism, millions of people like me will continue to be condemned by the irresponsibility of politicians, as well as by the gravity of their diseases. For this reason I would ask you to send me a message of support for this battle and for this appeal against the attack on the freedom of scientific research and practice, in particular against the prohibition of experimentation with embryos and of therapeutic cloning. I would like to take this opportunity to thank you, all of you, and also to express my thanks to Science, which is Knowledge. To Science, which is also Information Technology, thanks to which the wide sea of knowledge and ignorance, of despair and hope, of love and hate, which dwells inside me, which is me, and which would otherwise have been compelled to silence, enclosed in the narrow space of a bottle, can flow, however slowly, towards you all. Luca Coscioni lucacoscioni@visto.com Fax. +32-2-284.91.98 - +32-2-284.91.20 - +32-2-230.36.70 (2) ===== Help about disability policies ========== >From : "cRISTINA dIAZ" Subject: Help about dissability policies Date : Mon, 5 Mar 2001 My husband was diagnosed with ALS two years ago, when he started feeling weakness in his right hand. For a few years before he had twitches on his arms, but he never felt weakness so his conditions was diagnosed differently. Two years later his disease has advanced but slowly. His right arm is very weak, and we think that in less than a year he won't be able to write or type with it. We are in a dilemma about what to-do with his working levels. Right now he works full time (basically a desk oriented job), but between the overall weakness of his arms, the effect of the drugs he is taking (e.g. Rilutek), a general body weakness, and an overall mental stress I believe that this rate of work is bringing him down faster. We are in a catch 22 situation since you must work at least 80% to keep insurance benefits, and Disability insurance benefits. On one hand it would be good that he cuts down considerably (?50%) his time at work, but he would loose all his benefits, which will be very important when the disease advances. We would like to know from other PALS if you know anything about partial disability, or even disability policies. When does a person that works basically 8-12 hours day in front of a computer is consider eligible for disability benefits? Who determines if a person is disable or partially disable? and Do you loose your benefits if you are declared partially disable? Believe me, my husband is a very independent and active person, and he is not trying to get a free ride. We are just realizing that the same system that provides care for us, is at the same time sinking him. WE are exploring other solutions, like me trying to find a full time job, which insurance would cover "a spouse" with a precondition, etc. That would not solve the problem of the disability benefits. We have inquire to doctors, and to ALSA (In California) but there is little information about insurance that they can give us.. I thought that asking PALS who already have gone through this complicated issues could help us tremendously. If you have gone through something similar, or you know who we could talk about this subject, please let us know, Thanks Cristina (3) ===== re: Institute for Molecular Medicine protocol ========== >From : Bernie Windham Subject: re: Institute for Molecular Medicine protocol Date : Mon, 2 Apr 2001 >Prof. Garth Nicolson >The Institute for Molecular Medicine (website www.immed.org) > ... treatment includes ... heavy metal chelation ... >Update: Our preliminary results indicate that the majority of patients >improved their muscle strength tests from 20-50% after the end of the >first segment of treatment (8 weeks). Some clinical trial information, >IRB forms, Patient Informed Consent Form, Lab Testing Form, etc. for >your information. can be requested by email (All sent in Rich Text >Format) Does the heavy metal chelation part include tests for levels and amalgam replacement if that is an issue?? Did the first segment include amalgam replacement and heavy metal chelation? B.Windham (4) ===== ALSA Support Group Naples/Marco Island ========== >From : JANIS1212@aol.com Date : Sun, 8 Apr 2001 Subject: Re The ALS Association Support Group of Naples/Marco Island, Florida will be having their monthly support group meeting on Thursday, April 19th from 2 until 4pm at the Hawthorne Suites in Naples. Our speaker will be Dr. Lawrence Friedman, the new Pulmonary Specialist at the Cleveland Clinic in Naples. For more information call Janice Esposito 941-389-9576, or e-mail: janis1212@aol.com. Thank you. Janice Esposito, Support Group Leader (5) ===== ALS/MND & Pregnancy ========== >From : "Stephen Brown" Subject: ALS/MND & Pregnancy Date : Mon, 19 Feb 2001 A young lady with MND I know is having a baby. She has had MND/ALS for about 10 years. She has asked me to find out if anyone else knows of someone who gave birth while wheelchair bound with MND/ALS. ANY INFORMATION WOULD BE APPRECIATED. Thanks. Stay well, Stay positive. Stephen Brown (mutley) Email: mutley@tnet.com.au (6) ===== MND Scrapbook ========== >From : "Stephen Brown" Subject: MND Scrapbook Date : Mon, 19 Feb 2001 Can I reproduce extracts from your webpage? Can you share a story? Come on...Share What you have learnt Thanks to the Tzu Chi Foundation I have received sponsorship to produce a MND Scrapbook, a resource manual for people living with MND. This has been a goal of mine to produce an information manual with better, broader and caring advice for patients and carers, and others. I believe my twelve years experience coupled with researched and gathered relevant information from around Australia (and the world) will give me the starting platform, however, I NEED YOUR HELP. I want you to tell me what you want in the MND Scrapbook and also I want your input. a.. Share your story and experiences, write a short story, any length b.. Share tips and tricks you have learned to make life easier c.. Tell me about helpful equipment or services, anything d.. Tell me what information you want in the book, what might help others This is not a book, but rather a useful resource in a user-friendlier format to be offered free of charge...com'on your experiences can help others. Please forward any information or advice, or questions to me at 45 McDonald St, Herne Hill. WA. 6056 Australia or email me mutley@tnet.com.au Thanks, Stephen Brown Email: mutley@tnet.com.au My Page: http://members.tripod.com/~MNDMutley/index.html MNDAA: http://home.vicnet.net.au/~mndaust/ (7) ===== Les Turner ALS Foundation Web Site Updates ========== Date : Wed, 28 Mar 2001 >From : Les Turner ALS Foundation Subject: Les Turner ALS Foundation Web Site Updates New on the Les Turner ALS Foundation's web site are several articles from the Spring 2001 ALS Today newsletter as well as fundraising updates for the "Hope Through Caring" Award Dinner and Tag Days. Go to: http://www.lesturnerals.org/whatsnew.htm Among the highlights: A Ride with a Reason - Bob Lee continues on his two-month solo bicycle ride from San Diego, CA to St. Augustine, FL to benefit ALS research. Please note that there was an error in the listing of Bob's web site in the print edition of ALS Today. The correct address is www.aridewithareason.org . Whether or not you are able to attend the "Hope Through Caring" Award Dinner on Saturday, April 28 honoring best-selling author Scott Turow, you can participate in our exciting and unique raffle at www.lesturnerals.org/raffle.htm. The Foundation is calling all Chicagoland and Northwest Indiana volunteers to lend a few hours in their neighborhood on a weekend in May for Tag Days. A listing of Tag Days locations and dates can be found at www.lesturnerals.org/tagdays.htm . Les Turner ALS Foundation 8142 N. Lawndale Avenue Skokie, IL 60076-3322 Phone: 847-679-3311 Fax: 847-679-9109 www.lesturnerals.org (8) ===== My Mother ========== >From : Swiggy3@aol.com Date : Wed, 28 Mar 2001 Subject: My Mother I am writing this brief tribute to my mother Kathleen who lost her battle to ALS/Lyme on March 19, 2001. My mother was a very energetic person always on the go and always doing for others. She was never really sick. She was diagnosed last August and rapidly deteriorated. She went through so much in just a few short months. She had extensive surgery in December for a hiatal hernia that pushed her stomach up behind her heart and her stomach attached itself to a heart valve and her esophagus. Her heart valve needed to be repaired and her esophagus needed to be reconstructed. She had a terrible time recuperating from this surgery, BUT she did. The doctors were amazed how well she did despite her weakened condition from ALS/Lyme. She rallied for a little while after that too and started doing better with physical therapy ... we had HOPE. Then she started to deteriorate again from ALS/Lyme and it was like a freight train going through her from January until last week. I miss my mother very much and do not think I will ever get over the memory of her suffering. During her wake I learned of 3 more people (one I went to school with .. 45 yrs. old) that have ALS. I pray that the medical field soon finds a cure to end this horrid disease. (9) ===== ALS or LYMES? ========== Date : Mon, 26 Mar 2001 >From : eric vanderhorst Subject: ALS or LYMES? To all concerned, I was dx with ALS Jan 2000 and since have progressed to the point of having to use a wheelchair. All along I thought that maybe I could have lyme disease and a recent blood sample sent to California showed positive for lymes. I have now been on Ceftriaxone IV for 4 weeks and am also taking Flagyl as an oral abx. My progression has not slowed but almost seems like it has progressed more rapidly. I do not know if this progression is due to the "herx" reaction and am remaining positive that that is the case. My doctor wants me to stop the IV and go just with oral abx after 5 weeks of IV, but I think I should take it for a while longer yet. All along I have had major fasciculations in all my limbs and have lost strength and muscle of the same (atrophy). I was hoping that the fasciculations would have slowed after 4 weeks of IV treatment, but those have not decreased. My questions to you are the following: How long were you on Ceftriaxone (Rocephin) and are you still on it? What other abx are you taking with or without the above? How long do you anticipate taking the treatments? When did symptoms slow down and/or decrease? If you cannot help, could you give me the email addresses of someone you know that has experience in any of the above? I am desperate for a response as I need to approach my doctor with a request of prolonging the IV treatments and would appreciate very much a prompt response. Thanking you in advance and may God bless. Eric (10) ===== MA Chapter ALSA Seeking Support Group Leader ========== >From : BTep100@aol.com Date : Sun, 8 Apr 2001 Subject: MA Chapter ALSA Seeking Support Group Leader The MA Chapter ALS Association seeks a nurse (RN), social worker (MSW) or respiratory therapist to co-lead a monthly patient/caregiver support group in Methuen, MA. The group will meet at Holy Family Hospital the last Wednesday of every month from 7-8:30 p.m. Preference will be given to candidates who are familiar with neurological diseases and have some experience leading groups. Resume to: Judy Teplow Director of Patient Services ALS Association 75 McNeil Way, Suite 201 Dedham, MA 02026 or fax: 781-326-4940 === end of alsd 834 ===