=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #821 (18 March 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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: Dean Kraft 2 .. re: Prostate Cancer and ALS (ALSD 807) 3 .. re: Topiramate 4 .. Topiramate, etc. 5 .. MA Chapter ALSA - Milton Support Group 6 .. Van for Sale - MUST SELL 7 .. For Sale 8 .. re: Sore Heels 9 .. re: Communication Devices 10 . Signing the Petition 11 . Fundraiser 12 . Dry Scalp 13 . Incidence of ALS Study (1) ===== re: Dean Kraft ========== >From : HYPTEC@aol.com Date : Mon, 26 Feb 2001 Subject: Dean Kraft Dear Holly Saw your questions about Dean Kraft and Edgar Cayce. My husband, who has been a PALS for 5 years saw Dean Kraft regularly every week for about 5 months. There was NO improvement. Mr. Kraft charges $500 cash for each visit (no discounts at all ) and his office was not wheel chair friendly. I did speak to some people with ALS, who did find him helpful but just as many who did not. We went there with an open mind and would have continued but Mr. Kraft received an injury and decided not to work with wheel chair patients any more. Interesting situation for a healer. (That may have changed by now, I don't know.) Edgar Cayce died a number of years ago, but there is an Cayce Foundation, which I imagine you can find on the web. There are a small number of PALS who have found success with the Wet Cell Battery and you can get more information from the foundation. One of these PALS had a dramatic recovery and I think he has a web site. His name is David Atkinson. Sorry I don't have better news. God bless. Susan (2) ===== re: Prostate Cancer and ALS (ALSD 807) ========== >From : "Kok, Allart A" Subject: Prostate Cancer and ALS (Re: ALSD 807) Date : Mon, 5 Mar 2001 Testosterone hormone depletion is the first thing one does in treating prostate cancer because this hormone normally stimulates prostate cancer cells to divide. While an association between ALS and prostate cancer is rare (it has been reported in the literature ), I would not summarily dismiss this potential disease linkage given the abstracts below. I found the apoptosis paper to be particularly interesting. Apoptosis, as many of you know, is the process whereby injured/damaged/stressed cells commit suicide. Cell suicide can eliminate cells that are no longer needed or that have become damaged or stressed. Cell suicide is caused by molecules such as p53, which is often defective in cancers, in response to DNA damage and/or other cellular stresses - suicide effectively prevents defective cells from continuing to multiply. In ALS, the motorneurons appear to be commiting suicide, for whatever reason, and a gene-regulatory protein, Par-4 (prostate apoptosis response-4), may be involved. Par-4 appears be involved in triggering prostate cell death in association with castration/testosterone deprivation. Presumably, testosterone deprivation tells prostate cells that they are no longer needed, causing them to commit suicide. Talk about feeling rejected... One can speculate that (this is an educated scenario), in a subset of prostate cancer patients, motorneurons are inappropriately responding as if they were prostate cells. We do not understand a great deal about what makes one cell look and respond like a prostate cell and another look and respond like a motorneuron. Perhaps some normally neuron- protective molecule or pathway component, one that helps define/ determine what is prostate and neuron in terms of endocrine response, is missing. This is hardly a far-reaching scenario. Furthermore, it would be prudent to look to Par-4 and its regulation as candidate players in the broader ALS population, as some researchers are doing. Always remember that many roads may lead to Rome - follow the unusual cases and you might well cross paths with other ALS cases that start out with different degenerative mechanisms. PALS, keep thinking, keep talking, you may yet stumble on some important answers that "experts" did not see. (although DO ground it in fact - cut the Wet Cell nonsense) 1. Pedersen WA; Luo H; Kruman I; Kasarskis E; Mattson MP. The prostate apoptosis response-4 protein participates in motor neuron degeneration in amyotrophic lateral sclerosis.FASEB J 2000 May;14(7):913-24. ABSTRACT: Prostate apoptosis response-4 (Par-4), a protein containing a leucine zipper domain within a death domain, is up-regulated in prostate cancer cells and hippocampal neurons induced to undergo apoptosis. Here, we report higher Par-4 levels in lumbar spinal cord samples from patients with amyotrophic lateral sclerosis (ALS) than in lumbar spinal cord samples from neurologically normal patients. We also compared the levels of Par-4 in lumbar spinal cord samples from wild-type and transgenic mice expressing the human Cu/Zn-superoxide dismutase gene with a familial ALS mutation. Relative to control samples, higher Par-4 levels were observed in lumbar spinal cord samples prepared from the transgenic mice at a time when they had hind-limb paralysis. Immunohistochemical analyses of human and mouse lumbar spinal cord sections revealed that Par-4 is localized to motor neurons in the ventral horn region. In culture studies, exposure of primary mouse spinal cord motor neurons or NSC-19 motor neuron cells to oxidative insults resulted in a rapid and large increase in Par-4 levels that preceded apoptosis. Pretreatment of the motor neuron cells with a Par-4 antisense oligonucleotide prevented oxidative stress-induced apoptosis and reversed oxidative stress-induced mitochondrial dysfunction that preceded apoptosis. Collectively, these data suggest a role for Par-4 in models of motor neuron injury relevant to ALS 2. O'Keefe DS; Su SL; Bacich DJ; Horiguchi Y; Luo Y; Powell CT; Zandvliet D; Russell PJ; Molloy PL; Nowak NJ; Shows TB; Mullins C; Vonder Haar RA; Fair WR; Heston WD Mapping, genomic organization and promoter analysis of the human prostate-specific membrane antigen gene. Biochim Biophys Acta 1998 Nov 26;1443(1-2):113-27. ABSTRACT: Prostate-specific membrane antigen (PSMA) is a 100 kDa type II transmembrane protein with folate hydrolase and NAALAdase activity. PSMA is highly expressed in prostate cancer and the vasculature of most solid tumors, and is currently the target of a number of diagnostic and therapeutic strategies. PSMA is also expressed in the brain, and is involved in conversion of the major neurotransmitter NAAG (N-acetyl-aspartyl glutamate) to NAA and free glutamate, the levels of which are disrupted in several neurological disorders including multiple sclerosis, amyotrophic lateral sclerosis, Alzheimer's disease and schizophrenia...(truncated) (3) ===== re: Topiramate ========== >From : "Donna Delano" Subject: Topiramate Date : Sat, 17 Mar 2001 I have some questions on the messege about Topiramate that was listed in the digest Jan 30, 2001 From Jim Hamond. I am hoping someone can help Please. When I read the story my husband, Joe and I went to his doctor and he was prescribed the Topiramate. The dosage is increased gradually over a four week period. He is now on the third week ending. The drug numbs his tonge and he does not taste his food. The tonge numbing also make his speech worse. My question is, does this get better after a period of time or should he stop taking it now? He has not seen any beneficial changes or is it too early? I would like to hear from anyone that is or was taking this drug. Topiramate, aka, Topomax. The story about this was very encouraging but I need more feedback and soon. Thank you, Joe and Donna Delano Please e-mail me at dela@loa.com. Please do not e-mail me at the homail address listed above. Thanks again (4) ===== Topiramate, etc. ========== >From : "Janice Shults McCoy" Subject: Topiramate, etc. Date : Fri, 16 Mar 2001 I was dx in March 1999 at Baylor School of Medicine in Houston. In March 2000 I participated in the Topiramate drug study. The first week I took 25mg per day, the second week 50mg per day, the third week 75mg per day. In the third week, I was not sleeping at all, so I quit taking the Topiramate. The Houston doctors told me many of the drug study participants were having lots of side effects. The study was designed to gradually get up to 800mg per day. I'm in a wheelchair 12 hours a day, have a gel cushion seat, but my thighs still "burn" and I have a hard time getting comfortable. I worry about getting bedsores. Any suggestions? I plan on getting a sheepskin pad, and I can still stand up a few times during the day to stretch my legs. I've also checked into getting a headrest to put on my wheelchair (Jazzy 1120) since my neck gets tired during the day. Janice (5) ===== MA Chapter ALSA - Milton Support Group ========== >From : BTep100@aol.com Date : Wed, 14 Mar 2001 Subject: MA Chapter ALS Association-MiltonSupport Group Ma Chapter ALS Association- Milton Support Group Location: Milton Healthcare Facility, 1200 Brush Hill Road, Milton. MA Date : Wednesday, March 21st Time : 7:00-8:30 p.m. Speaker : Adele Gagne, MS,CCC, Speech & Swallowing Specialist Topic : Adapting to Swallowing Changes (Evaluating swallowing problems, : tips for safe swallowing, changes in diet) For more information or to register, call Judith Teplow at 781-828-6519. (6) ===== Van for Sale - MUST SELL ========== Date : Fri, 16 Mar 2001 Subject: ALS Digest Posting >From : quietwon@juno.com Van for Sale: MUST SELL 1995 Dodge B250 Full Size Conversion Van 41,000 miles $18,000 or best offer Great Condition, runs great, clean 318 V-8 Auto Transmission 2 Captain Chairs Rear Bench/Bed Pwr windows/locks cruise control & tilt steering AM/FM stereo cassette front & rear heat and A/C Raised Roof with extended doors fully automatic Ricon 30x48 split lift - side entry Q straint tie downs Michigan - Detroit area Contact Lisa at quietwon@juno.com or (248) 625-8937 (7) ===== For Sale ========== Date : Thu, 15 Mar 2001 >From : Robin Swope Subject: For Sale Electric Wheelchairs for sale: INVACARE Ranger II Mid Wheel Drive-Tarsys, Jay-2 Cushion, Joy Stick, Gel-Cell Battery, Leg Rests, Easy Lock, 2 Years $7,500 OBO. Washington D.C. area 301-942-2675 Jazzy Pride-Apple Red, High Backseat, Large foot rest, Swing away joy stick, on Board Battery Charger, Easy Lock. $2,500 OBO Washington, D.C . area 301-942-2675. Hoyer Lift Hydraulic Electric Lifter W/Muesh U-sling. 1 year old. Price New $2,650. Asking $1,250. Washington, D.C. Area, 301-942-2675. Pegusus Air Wave Electronic Mattress-prevents ulcer and Bedsores $3,000.00 Washington, D.C. area 301-942-2675. (8) ===== re: Sore Heels ========== >From : "Bobbi Jacobsen" Subject: Sore Heels Date : Sat, 03 Mar 2001 Leo, do your heels hurt all the time, or only when you are in bed? If you sleep on your back, the weight of your foot may be causing your pain; at least that is my situation. If you roll up a piece of foam and put it under your ankles, this should help a lot. (Some PALS get a moon boot from their OT, serves the same purpose.) If you experience numbness in your toes (again, while laying on your back) it is probably caused by the weight of the blankets. Your OT can get you an apparatus that will 'tent' your blankets over your feet. Good Luck, I know how painful this situation can be. Bobbi (9) ===== re: Communication Devices ========== >From : Lisa Murphy Subject: FW: Communication Devices Date : Thu, 8 Mar 2001 My husband was diagnosed with ALS 11/01/00. According the specialist at Northwestern Memorial Hospital in Chicago, Michael has Upper Motor Neuron problems only which has affected his speech terribly. He has not had any other problems other than speech. Well, a wonderful communication device was recommended by a speech pathologist. It's called a Lightwriter. It has a keyboard with a display that the pALS can see and the other person can see. It also speaks when the space bar is pressed or when a special key is pressed, it speaks a whole sentence. This device is expensive, but has been a God-send for us. It is small, about 8x11 and weighs under 2 lbs. I hope this information helps others. Lisa Murphy (10) ===== Signing the Petition ========== Date : Thu, 08 Mar 2001 >From : ASGhomeagain@netscape.net Subject: Signing the Petition To all of the pals, their families and friends, reading this newsletter: currently, there is a petition circulating via the internet asking President Bush to continue supporting stem cell research. The letter and requests for signatures has been posted in this newsletter several times. Yet as of today, March 7, there are 8700 signatures. This is a disgrace. The readership of this newsletter is 4700 people. If only 50% of them have signed the petition and had only one other person participate, this number would still be higher. Stem cell research remains the best hope not only for ALS victims, but for many other diseases, such as Diabetes and Parkinsons. It also is expected to help brain and spinal cord damaged individuals. This is your chance to be heard, but too many of you are sitting back expecting others to help. Make it your goal today to sign the petition and ask or e-mail 10 other family members and friends to sign. The petition site is listed below. Do it now, the letter goes to President Bush shortly. 100,000 signatures is the goal of the writers of the petition. We can do it if each of you does his/her part. Sign up now--It's EASY. Log on to: http://www.PetitionOnline.com/stmcll/petition.html (11) ===== Fundraiser ========== >From : "Marjorie Spoto" Subject: Fundraiser Date : Fri, 16 Mar 2001 The Miami ALS Foundation and When It Rains Productions presents "When It Rains...For ALS". A Silent Auction Benefit Honoring Christine Hahn, Thursday, April 19, 2001 6:30 to 9:30 "At The Top" of the Crowne Plaza La Concha at 430 Duval Street, Key West, FL. Admission is $30 per person (tax deductible). Admission includes a beautiful sunset, Hors d'ouvres, Complimentary Wine and Beer, Music and Dancing. For Questions Call Marjorie Spoto (305) 293-8788. We are still looking for volunteers for silent auction items and volunteers for the day of the event. RSVP to: (305) 293-8788 or wirproductions@aol.com. To make a tax deductible donation: When It Rains...For ALS, PO Box 6255, Key West, FL 33040. Make Checks payable to: The Miami University ALS Research Foundation. Key West, FL 33040 * Make Checks Payable to: ALS Research Foundation There is no cure for Amytrophic Lateral Sclerosis (ALS) a.k.a. Lou Gehrig's Disease. With your help, we can make that fact history. Marjorie Spoto Floridakeys.com marjorie@keywest.com (12) ===== Dry scalp ========== >From : "Moore Family" Subject: Dry scalp Date : Fri, 9 Mar 2001 My husband has ALS and is taking several meds and vitamins. I think the amytriptiline is making his face and scalp dry. He needs his head scratched several times a day. Have tried a couple different things but his scalp is very dry and flaky. Any ideas. pdkjmore@aptalaska.net Thanks Donna (13) ===== Incidence of ALS Study ========== Date : Thu, 15 Mar 2001 Subject: Incidence of ALS Study >From : Patrick Griffin Piemonte and Valle d'Aosta Register for Amyotrophic Lateral Sclerosis (PARALS). [Record supplied by publisher] OBJECTIVE: To determine the incidence of ALS in two regions of Northwestern Italy, utilizing a prospective design. METHODS: The study was performed in Piemonte and Valle d'Aosta (4,418,503 inhabitants) during the period 1995 to 1996. All neurologic departments in the two regions were involved in the study and prospectively collected and followed up ALS cases. Other secondary sources of information were used in order to ensure complete case ascertainment. ALS diagnosis was based on El Escorial criteria. Although all patients with motor neuron disease were enrolled in the follow-up, only probable and definite cases are included inthe study. RESULTS: During the study period, 221 cases of ALS were found (120 men and 101 women), corresponding to a mean annual crude incidence rate of 2.5/100,000 population (95% CI 2.2 to 2.9). The rate was higher for men (2.9) than for women (2.3), and increased with age to a peak in the 75 to 79 age group among men and to the 70 to 74 age group among women. CONCLUSIONS: Comparing these data to those of epidemiologic studies with a similar prospective design, the incidence rates are similar, despite the large differences in terms of genetics, environment, and socioeconomic background. This finding points to diffuse environmental or genetic factors rather than to a specific exogenous toxin in the pathogenesis of ALS. ---- For those who desire "scientific" evidence contradicting a causal relationship between exposure to mercury (and/or other factors) and incidence of ALS, please carefully read this and especially the last sentence. Remember, in this study, ALS was examined as a specific disease, not simply a cluster of neuromuscular symptoms *similar* to ALS. Patrick Griffin === end of alsd 821 ===