Date: Sat, 19 Nov 94 16:30:07 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#150 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#150, 19 November 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot's Disease == == == == 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 == == 400+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == Sorry, but this is *not* a LISTSERV setup. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== ===== = Two issues are being published today. Both important! Love, bro ===== CONTENTS OF THIS ISSUE: 1 .. RE: Neurontin Question 2 .. ALS & Alternative Medicine 3 .. RE: Enterovirus and ALS 4 .. Any suggestions on how to stop severe cramps? 5 .. Hoyer Lifter & Accessories 6 .. ALS 7 .. Transgenic animals and E.coli 8 .. recent MEDLINE entries 9 .. re: MOTOR NEURON DISEASE (book) (1) ===== RE: Neurontin Question ========== Date : 19 Nov 94 11:00:32 EST >From : "Gordon R. Pounds" <74652.3605@compuserve.com> Subject: RE: Neurontin Question Dear Val, I have been taking Neurontin for over two months. I am on 2400mg a day. My doctor is at the Univ. of Iowa Hosp. and is now heading up one of the studies for neurontin. I currently am on CNTF in another of his studies. This is how he prescribed to take neurontin. 1 400mg pill at bedtime for 4 days then add another 400mg at breakfast for 4 days. Then 1 400mg in early afternoon for 4 days. Continue adding 1 pill every 4 days at these respective times until you are taking 6 400mg pills a day. It should take you 24 days before you are on the full dosage. I hope this information will help you. Gordon Pounds (2) ===== ALS & Alternative Medicine ========== Newsgroups: misc.health.alternative >From : jaks007@aol.com (Jaks007) Subject : ALS & Alternative Medicine I have a relative who has been diagnosed with amyotrophic lateral sclerosis. Does anyone know anything about this disease? I am curious to know if anyone has ever tried diet or herbs to treat this disease? The initial diagnosis was Lyme disease. Is there anyone else out there who got ALS after first having Lyme disease? I wonder if there is a possibility that the Lyme disease somehow triggered the ALS. (3) ===== RE: Enterovirus and ALS ========== Date : Fri, 18 Nov 94 08:10:25 PST >From : scottb@CERF.NET Subject: RE: Enterovirus and ALS Dr. Westarps observations about the potential role/etiology that a virus could play in ALS are compelling. He, like us, is finding that most ALS patients do not have a defective SOD-1 gene and that while this may potentially represent a causal or correlated etiologic factor for a small number of ALS patients, the vast majority of patients with ALS do not appear to have a defective SOD-1 gene. If we assume for the moment that Dr. Westarp is correct, then what research should be conducted to identify potential sources of virus. Would an epidemiological approach to this population which researched history identify one or more specific viral events which occurred years ago in pronounced fashion in a large number of ALS patients - my understanding is that some larger epidemiological studies on this matter have not identified any specific common factor in the history of ALS patients (except possibly excessive exercise and even this may be a weak relationship) - however I am unaware whether or not viral factors were considered in these ALS patient background studies. Secondly, does the prevelance of ALS correspond to the prevalance in the general population of a specific virus? Along the same lines, the Guam population is frequently signted as having had a high prevalance of ALS patients for a period of time and now the number is decreasing again... would a review of Guam's history show that 30 years prior to the spike in identified ALS patients they had an outbreak of a certain virus for a period of time, which later subsided! In fact, as I think about it, might Guam be at least one strong candidate for searching for a historical virus which might later have led to ALS! More importantly, if Dr. Westarp were correct, what pilot research studies might be tried. A lot of medical treatment these days, especially for difficult to diagnose patients, focuses on trying one treatment and if it works then identify the illness in light of the treatment that seemed to fit. Would certain treatments be high on the list for testing their effect on a potential virus (even if it cannot be identified) and how would you test to see if the treatment were working (e.g., look for substantial improvement in the patient's condition, identify and then test for the continuing presence/prevelance of the virus?). I do believe that a virus may be the root cause for many ALS patients' conditions. I will be very interested in responses from others to these questions and especially to Dr. Westarp's if he would be kind enough to provide us with guidance. Scott Bernard (4) ===== Any suggestions on how to stop severe cramps? ========== Date : Thu, 17 Nov 94 20:38:09 PST >From : Kathy=Goeddel%CGG%InfoSys@banyan.BV.TEK.COM Subject: Any suggestions on how to stop severe cramps? An ALS patient I know is experiencing severe spasticity/cramping in his lower abdominal muscles. The problem is his muscles, not his intestines. This makes it very painful to sit in an upright or semi-reclining position. He just started on Baclofen, 10mg in the evening, but it provides only short-term relief at best. We have not been able to find anyone who has had this problem before. We are eager to learn of any helpful therapies or treatments. Kathy (5) ===== Hoyer Lifter & Accessories ========== Date : Thu, 17 Nov 1994 22:25:52 -0500 >From : SadieJanie@aol.com Subject: Hoyer Lifter & Accessories I thought this information may be useful to others....We purchased a portable Hoyer lift for my mother in law who is unable to move herself around. Actually, we are renting the lift and with medicare's help, we are paying only $18 month to use it. It's great, inexpensive, portable and enables my mother in law to travel without having the expense of an automatic lift for a van which may cost several thousand dollars. The hoyer lift works like this....The patient sits on a cloth sling' which can be attached at 4 corners, by chain links, to the lift. The lift is hydraulic, so we lift her up and out of one chair and lower her into another chair, or to a seat in the car or van. We then fold the lift, stick it in the vehicle and we're on our way! Also, we have located some aluminum ramps for the wheelchair. The ramps also fold up and have a carrying handle. I think we paid about $360 less a 20% discount, so the cost was about $300 plus shipping. The addresses for the two companies are listed here. You can call or send for brochures and more information. The Hoyer lift ...address is Guardian, a division of Sunrise Medical, PO Box 3190, Simi Valley, CA 93093-3190 Phone is 800-255-5022. The aluminum ramps ... address is Higs Aluminum Products, 10625 Maple Lane, Rogers, MN 55379 Phone is 800-328-4827. Hope this information is helpful to you. (6) ===== ALS ========== Date : Thu, 17 Nov 1994 17:15:34 EST Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3654 ------------------------------------------------------------------ Subject : ALS >From : kate.kaul@ablelink.org (Kate Kaul) Organization: Ability OnLine - Toronto Canada Does anyone have real information on ALS? I have a range of silly pamphlets from the local ALS society, but would appreciate something more practical. Thanks KK ------------------------------------------------------------------- (7) ===== Transgenic animals and E.coli ========== Date : Fri, 18 Nov 1994 15:09:04 BRA Sender : "EMBNet (European Molecular Biology Network) Distribution List" >From : FRED%UFRJ.BITNET@vm.cnuce.cnr.it Subject: Transgenic animals and E.coli Dear EMBNETters, I would like to ask for two favors. First, I would like to know of any groups working with transgenic animals. I have a friend who wants to pursue a Masters degree in this area and is looking for a laboratory. Second, a colleague of mine needs urgently E. coli entA mutants (AN90 and AN93)and entA plasmids. If any of you have access to them, please contact me. Thanks in advance for any help you might give. Yours faithfully, Frederico A. de C. Furtado Laboratorio de Radiobiologia Molecular Instituto de Biofisica Carlos Chagas Filho Bloco G - CCS Ilha do Fundao - Rio de Janeiro, RJ Brasil (8) ===== recent MEDLINE entries ========== MEDLINE (via US HealthLink) Clipping Folder BBROEDEL_ALS1 ================================================ Document No : 94361627 Title : Effect of high-dose intravenous immunoglobulin on : amyotrophic lateral sclerosis and multifocal motor : neuropathy. Author : Dalakas MC; Stein DP; Otero C; Sekul E; Cupler EJ; : McCrosky S Source : Archives of Neurology 1994 Sep;51(9):861-4 ================================================ Document No : 94367686 Title : Amyotrophic lateral sclerosis with dementia. Author : Cavalleri F; De Renzi E Source : ACTA Neurologica Scandinavica 1994 May;89(5):391-4 ================================================ Document No : 94366639 Title : Serum fractions from amyotrophic lateral sclerosis : patients depress voltage-activated Ca2+ currents of rat : cerebellar granule cells in culture. Author : Zhainazarov AB; Annunziata P; Toneatto S; Cherubini E; : Nistri A Source : Neuroscience Letters 1994 May 19;172(1-2):111-4 ================================================ Document No : 94364376 Title : Riluzole, a novel antiglutamate, blocks GABA uptake by : striatal synaptosomes. Author : Mantz J; Laudenbach V; Lecharny JB; Henzel D; Desmonts JM Source : European Journal of Pharmacology : 1994 May 12;257(1-2):R7-8 ================================================ Document No : 94378816 Title : Immunocytochemical and ultrastructural studies of the : motor cortex in amyotrophic lateral sclerosis. Author : Sasaki S; Maruyama S Source : ACTA Neuropathologica 1994;87(6):578-85 ================================================ Document No : 94366162 Title : Intelligibility and the acoustic characteristics of : speech in amyotrophic lateral sclerosis (ALS). Author : Mulligan M; Carpenter J; Riddel J; Delaney MK; Badger G; : Krusinski P; Tandan R Source : Journal of Speech and Hearing Research : 1994 Jun;37(3):496-503 ================================================ Document No : 94376840 Title : A transgenic-mouse model of amyotrophic lateral sclerosis. Author : Brown RH Source : New England Journal of Medicinez 1994 Oct 20;331(16):1091-2 ================================================ Document No : 94367690 Title : Different plasma glutamate levels in subtype of : amyotrophic lateral sclerosis [letter] Author : Iwasaki Y; Ikeda K; Shiojima T; Kobayashi T; Kinoshita M Source : ACTA Neurologica Scandinavica 1994 May;89(5):404-5 ================================================ Document No : 94373690 Title : Assessment of respiratory function in the intensive care : unit. Author : Bolton CF Source : Canadian Journal of Neurological Sciences : 1994 May;21(2):S28-34 ================================================= Document No : 94377428 Title : The development of mitochondrial medicine. Author : Luft R Source : Proceedings of the National Academy of Sciences of the USA : 1994 Sep 13;91(19):8731-8 ================================================= Document No : 94366202 Title : Oxidative damage in neurodegenerative disease. Author : Jenner P Source : Lancet 1994 Sep 17;344(8925):796-8 ================================================= (9) ===== re: MOTOR NEURON DISEASE (book) ========== Date: 17 Nov 94 10:13:29 EST >From: Subject: Re: MOTOR NEURON DISEASE-CONTENTS Dear Bob Many thanks for the copy of ALS Digest 147. As many readers are European then, yes, enquiries for the book should be directed to our customer services in the UK fax: 0264 342761. Alternatively, email: jmankar@chall.mhs.compuserve.com (marketing dept for medical/health science books). Any other enquiries can always be directed to me and I will pass these on to the relevant person. The brief quote you used was fine (within `fair use' limits). For your information, should you ever wish to quote more than about 400 words from a book, then you should obtain permission from the publisher. Anything below that is generally considered as `fair use'. NB this applies to books only, not eg. journal articles. We are also planning another book on MND for next year - it is a practical book concerning care of those with the disease, rather than a research volume. In case it is of interest, here are details: Motor Neurone Disease S Bereford, Mansfield Hospital, Northampton, UK Therapy in Practice Series (Series Editor: Jo Campling) MND is a degenerative neuromuscular disease which destroys the motor neurones, causing progressive muscle wasting, weakness, loss of mobility and independence. The intellect and memory are not affected and whilst the obvious effects of the disease are physical, the psychological impact on the sufferer and carer is far reaching. The disease is invariably fatal with an average life expectancy being between two and five years from diagnosis. The multidisciplinary team involved in providing care for a person with MND and their family can be large and at present, there are no books available to help the healthcare professional gain an understanding of the person with MND, or suggest ways in which she can address their ever growing care needs. The book identifies possible team members and provides a theoretical framework based on humanism and the hospice philosophy, from which to address assessment and treatment planning. Areas for concern specific to people with MND are discussed within the text at the time of diagnosis, through the progression of the illness, during terminal care, and bereavement support for the family. * only book available on the management of people with motor neurone disease * first book to apply principles of palliative care to management of people with MND and their families * only book to address physical and psychological issues at the time of diagnosis, through the progression of the disease, terminal care and bereavement support for the family * offers a theoretical framework on which to base multidisciplinary practice Contents: Part One - Description of motor neurone disease; Part Two - Introduction; The multidisciplinary team; Aims and objectives of the multidisciplinary team; Assessment and treatment planning; Part Three - Introduction; Primary care - the early stage; Continuing care - the middle stage; Terminal care - the late stage; Bereavement support; Part Four - Introduction; Appendix 1 - the motor neurone disease association of the UK; Appendix 2 - equipment and suppliers; Appendix - useful addresses. Chapman & Hall, c.176 pages, May 1995, 0-412-55640-5, *12.95 Regards ANNA ===== = Please note that it looks like this publisher has two books with = a similar name. The one mentioned above that is due to be published = next year, and the one that was mentioned in ALS Digest 147. = We published the "Table of Contents" of MOTOR NEURON DISEASE, edited = by A.C. Williams (1994, Chapman & Hall) in ALS Digest 118. Though we = are just now getting official information to do that, I did have an = "unofficial" go ahead to do it. Issue 118 also gives address, TEL & = FAX info for the US office of Chapman & Hall Medical ... but they had = no E-mail address. Now we have an E-mail address for Chapman & Hall = Medical (England)! rgds,bro ===== === end of als 150 ===