=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest #842 (24 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 Please be advised, == == the editor is not a medical doctor and the Digest is == == not peer reviewed.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 .. Alternative Treatments 2 .. mercury and neurons (ALSD 828, 841) 3 .. re: ALS and Lymes? (ALSD835, 840) 4 .. MRI and proton MR spectroscopy in diagnosis of ALS 5 .. PLS - Primary lateral sclerosis: further clarification 6 .. re: Injectable Glutathione (ALSD840) 7 .. medical equipment 8 .. keyboard 9 .. cushion 10 . meetings in Canada 11 . Medicare funding of adaptive equipment 12 . Vegan Diet 13 . Getting together on June 24 for prayer 14 . re: gamma globulin 15 . ALS Diagnosis of your husband (ALSD815) 16 . for sale 17 . re: communication devices (1) ===== Alternative Treatments ========== >From : John Paine Subject: Alternative Treatments Date : Thu, 19 Apr 2001 Greetings, My name is John Paine, I reside in Dallas Texas, and was diagnosed with ALS September 22, 2000. Dehabilitating symptoms are progressing rapidly. I am presently involved with everything that conventional western medicine has recommended for treatment. I am being treated at the UT Southwestern Medical school. I am seeking alternative treatments. I have been introduced to two alternative methods. One is by Dr. Renee Espy from Wolpol, Massachusets, just out of Boston. Her specialty is applied kneiselogoy. Her treatment process involves micro current resident frequencies and re-supplying the body with essential fatty acids. The second is Douglas Leber, located in Grapevine, Texas, who diagnoses illness with a Computron machine and then recommends various natural remedies, herbs and diet plans. Has anyone had experience with either of these applications or either of these practitioners? Both treatment methods are expensive. It is so difficult to validate the accuracy of alternative treatment claims and I would greatly appreciate anyone's personal knowledge relative to these practitioners or these treatment methods. Please respond to my private email address: jpaine@providencellc.com as soon as possible if you can help. Thanks to all in advance. Best, John Paine (2) ===== re: mercury and neurons (ALSD 828, 841) ========== >From : Wisampson@cs.com Date : Sat, 21 Apr 2001 Subject: >B Windham writes: >People can decide for themselves if the study is relevant to ALS since I >gave info on how to access it, and also whether the full documentation of >about 50 medical studies that make the case that mercury causes the type >of damage seen in ALS makes a strong case. Full papers can be obtained >from Medline in most cases(www.nlm.nih.gov). The mercury matter is again raised. Many heavy metals are neurotoxins (and kidney toxins, blood cell toxins, etc.) Readers will recall that there is no credible evidence that removal of mercury sources, including amalgam fillings, has any effect on the progression of ALS. That is largely because ALS is not likely caused by or aggravated by mercury, but also because the exposure to mercury from fillings is miniscule and well withing safe limits. Thus the mercury matter is moot. More important is the hold on stem cell research by the HHS. ALS people and families would be wise to object vigorously to both the White House and to HHS. WSampson MD (3) ===== re: ALS and Lymes? (ALSD835, 840) ========== >From : Wisampson@cs.com Date : Sat, 21 Apr 2001 Subject: >Do neurologist have a proven higher rate of cures with Lyme Disease than >other types of doctors or practitioners? B. windham Neurologists are more likely to be able to diagnose ALS reliably and to tell the difference between ALS and Lyme than other medical specialists - perhaps with the opinion of an infectious disease specialist. That was the point of the comment. WSampsonMD (4) ===== MRI and proton MR spectroscopy in diagnosis of ALS ========== >From : Dasroster@aol.com Date : Sun, 22 Apr 2001 Subject: MRI and proton MR spectroscopy in diagnosis of ALS Magnetic resonance imaging and 1H-magnetic resonance spectroscopy in amyotrophic lateral sclerosis. Sarchielli P, Pelliccioli GP, Tarducci R, Chiarini P, Presciutti O, Gobbi G, Gallai V. Neurological Clinic, Policlinico Monte Luce, Perugia, Italy. neuro@netemedia.net We aimed to increase confidence in the combined use of MRI and proton MR spectroscopy (1H-MRS) in diagnosis of amyotrophic lateral sclerosis (ALS). We investigated 12 patients with ALS, seven definite and five probable, taking into account clinical measures of motor neuron function. On T2-weighted images we found high signal in the corticospinal tract in six and low signal in the primary motor cortex in seven of the 12 patients. Atrophy of the precentral gyrus was apparent in all the patients apart from one with probable ALS. Absolute quantification of cerebral metabolites using 1H-MRS demonstrated a significantly lower mean concentration of N-acetylaspartate (NAA) in the precentral gyrus of patients with probable and definite ALS (8.5 +/- 0.62) than in control subjects (10.4 +/- 0.71; P < 0.001). NAA concentration in primary motor cortex correlated with Norris scale scores (r = 0.30; P < 0.0001) but not with the ALS Functional Rating Scale score or disease duration. Significantly lower levels of NAA were detected in patients with low signal in the motor cortex than in those without (P < 0.01). Mean choline (Cho) and creatine (Cr) values did not differ between patients with ALS and controls. PMID: 11305749 [PubMed - in process] (5) ===== PLS - Primary lateral sclerosis: further clarification ========== >From : Dasroster@aol.com Date : Sun, 22 Apr 2001 Subject: (PLS) Primary lateral sclerosis: further clarification Primary lateral sclerosis: further clarification. Le Forestier N, Maisonobe T, Spelle L, Lesort A, Salachas F, Lacomblez L, Samson Y, Bouche P, Meininger V. Federation de Neurologie Mazarin Professeurs Delattre et Meininger, Hopital de la Salpetriere, 47 Boulevard de l'Hopital, 75013, Paris, France Primary lateral sclerosis (PLS) has been defined as a rare. Non-hereditary disease characterized by progressive spinobulbar spasticity, related to the exclusive involvement of precentral pyramidal neurons, with secondary pyramidal tract degeneration and a preservation of anterior horn motor neurons, the latter allowing PLS to be distinguish from amyotrophic lateral sclerosis (ALS). However, a clear distinction between the two diseases remains a subject of debate. With this in mind, we assessed patients with meeting the previously published criteria for PLS in a prospective, longitudinal study. At regular intervals, we analyzed various clinical and electrophysiological parameters in nine patients with a diagnosis of PLS. We made a deltoid muscle biopsy and PET study. Our results provide evidence that degeneration in PLS is not restricted to the upper motor neurons but also affects the lower motor neurons. The distinction between ALS and PLS is related to the degree and stability of lower motor neuron involvement. In view of the similarities with ALS, we consider that PLS may represent a slowly progressive syndrome closely related to this disease. PMID: 11311289 [PubMed - as supplied by publisher] (6) ===== re: Injectable Glutathione (ALSD840) ========== >From : TLTERNET@aol.com Date : Thu, 19 Apr 2001 Subject: Re: I use injectable Glutathione. It is prescribed for me by Dr. David Perlmutter in Naples, FL His phone # is 941-649-7400. It is supplied by Wellness Health Pharmaceuticals in Birmingham,AL (800-227-2627, 208-879-6551) Terry Ternet (7) ===== medical equipment ========== >From : "Dee Stemrich" Subject: medical equipment Date : Mon, 23 Apr 2001 My husband of 18 years, Rick, got promoted last August and went to heaven after a very inspiring fight with ALS. I live in the North Florida/South Georgia area and have some medical equipment I would like to donate to any one with a need, especially a financial one. Some of the things include: 15 cases of Osmolite HN (expires July/Aug2001), enteral feeding bags, male external condom catheters, trache cleaning and care kits, suction catheter kits, individual suction catheters, humidifier tubing, and much more. These larger items, I would like to sell. EZ pivot lift model EP-85, used twice. Retail is $1395. Asking $600. Arrow Action Storm Series electric wheelchair with Tarsys system (head controls, tilt, recline, electric legs, Roho cushion) $18,000, asking $10,000. Never used. If you are interested in any of these items, please contact me at pals@leading.net God bless you. Dee Stemrich (8) ===== keyboard ========== >From : "phmoinon" Subject: keyboard Date : Tue, 17 Apr 2001 I'm looking for a small keyboard (abt 170 X100) to drive my PC. Me?: French PALS since 86, fingers and wrist OK, but not elbow and shoulder; cannot use magnetic pen to activate keys Thanks for your help phmoinon@wanadoo.fr (9) ===== cushion ========== >From : Ernest49@webtv.net (Ernest Cosson) Date : Wed, 18 Apr 2001 Subject: Re: My name is Kelli and I am trying to help Bill C. find the best type of cushion we can for him. He generally sits in a office type chair that is 20 " wide by 19 " deep. We have looked up at least a jillion of these cushions and can't really decside which seems best...can anyone tell us if there are any recommended types for ALS. WE would love to hear the opinions of other ALSers who might have recommendations. We are considering comfort as well as quality. Let us know a.s.a.p THANX (10) ===== meetings in Canada ========== Date : Wed, 18 Apr 2001 >From : Dan Maloney Subject: Meeting for the Castlegar, Creston, Nelson, Trail & Salmo, : B.C. Areas THE NEXT MEETING FOR PALS, CALS AND SUPPORTERS OF THE CASTLEGAR, CRESTON, NELSON, TRAIL AND SALMO, B.C., CANADA, WILL BE HELD AT THE GRIFFITH'S RESIDENCE, 511 SIXTH STREET, SALMO, B.C. CANADA, ON THURSDAY APRIL 26TH AT 1:30 PM. EVERYONE WELCOME. PHONE 250 357 2002 (11) ===== Medicare funding of adaptive equipment ========== Date : Fri, 20 Apr 2001 >From : David Yager Subject: Medicare funding of adaptive equipment I received this from my speech pathologist, Lynn Fox, about Medicare funding adaptive equipment I don't know if you and the other people with whom you communicate are aware that Medicare will now pay for software and for access technology, such as Tracker, etc. Medicare funding became effective in January of this year. The funding process requires an evaluation by a Speech-Language Pathologist. The SLP writes a justification for the necessary equipment, obtains a prescription from the person's physician, and submits a claim to the vendor of the equipment. The vendor issues the equipment directly to the person, and is reimbursed by Medicare for 80% of the the agreed-upon cost. If someone has supplemental insurance, that company will be billed for the deductable. Although any Speech-Language Pathologist can write a justification, I would suggest that people be evaluated by centers with expertise in technology assessment. One of the centers in Oregon is Dr. Fried-Oken's Assistive Technology Center at Oregon Health Sciences University. David Yager dYager@compuserve.com (12) ===== Vegan Diet ========== >From : GEEZERGOV@aol.com Date : Tue, 24 Apr 2001 Subject: VEGAN DIET WE ARE INVESTIGATING THE EFFECT OF DIET ON GLUTAMATE. 1. HAS ANYONE BEEN ON A VEGAN DIET LONG TERM BEFORE ONSET OF ALS? 2. HAS ANYONE GONE ON A VEGETARIAN DIET AFTER ALS DIAGNOSIS AND OBSERVED ANY IMPROVEMENT IN STRENGTH OR OTHER SYMPTOMS? WE WOULD LIKE COMMENTS FROM ANYONE. THANK YOU. BILL DEHN geezergov@aol.com FAX 714-446-9903 (13) ===== Getting together on June 24 for prayer. ========== >From : "marisabel Alcalde" Subject: Getting together on June 24 for prayer. Date : Thu, 19 Apr 2001 This note is for a very special request. My father is an ALS patient. I believe that science and medicine are key factors to to help this devastating disease, but we sometimes forget that overall, regardless of our pain and suffering there is our GOD who we need to pray to. Prayer is a very strong medicine that has the power to accomplish good things. Therefore, I am asking caregivers, the patients, physicians, family members and anyone related to this disease, regardless of your religion. Catholics, Baptists, Presbyterians, Jeovah Witness, Mormons, Jews etc. to please get together in thought and meditation on June 24th at 10:00 am eastern standard time. And lets all have a few minutes of silence and pray to our GOD to aid us in the quest for answers on this disease. I hope this could be accomplished and taken seriously like other quests posted on the digest. Whoever can post this on the other als related websites I will surely appreciate it. Thanks, paul@coqui.net (14) ===== re: gamma globulin ========== >From : "mcken2" Subject: Date : Sat, 21 Apr 2001 GG Treatment. Harry Gould has been keeping his posting on the community listings below. I attached the following email received by Harry about GG treatment Harry once again, thanks for keeping us all updated, you are a GOD sent to us all.. Beverly Brents little sis - from NC CALS http://members.tripod.com/brentsplace/ ==== Dear Relatives and Friends, I have received many inquiries about the treatment that I have been receiving for my ALS condition. Below are two websites where I have posted the info about the treatment. You can also view the comments that I have received from the ALS community. Harry Gould http://www.lougehrigsdisease.net/disc7_toc.htm http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=3Dtop= ics&forum=3DALS&number=3D3&DaysPrune=3D10&LastLogin=3D (15) ===== ALS Diagnosis of your husband (ALSD815) ========== Date : Mon, 05 Mar 2001 Subject: ALS Diagnosis of your husband >From : "Prof. Garth L Nicolson" I noted in the recent ALS Digest #815 that you had some questions about the diagnosis of ALS in your husband and the fact that he appears to be atypical for an ALS patient. Often when the diagnosis is not straightforward, there is likely something else going on. We have found that atypical ALS patients are certainly the ones who have multiple chronic bacterial and viral infections that could play a role in their illness. IF you would like more information, go to our website, www.immed.org under Autoimmune Diseases. We are working on new therapies for ALS infections as well as infections found in other autoimmune patient groups. In an IRB-approved study between the Institute for Molecular Medicine and Dr. Darryl See of the Immune Institute here in Southern California we have found that 8 weeks of combination therapy for ALS patients directed at their chronic infections (mainly mycoplasma AND echo-7 enterovirus) increased muscle strength 20-40% in most patients. Neither treatment alone had much effect, so we feel that both infections are important in causing patient morbidity. This is only a preliminary treatment program, but the results were very impressive. We have found that >85% of ALS patients have these two infections. Unfortunately, most neurologists do not accept at all that complex autoimmune neurological disorders could involve chronic infections. However, when such infections are found, it is our opinion that they should be treated. Other autoimmune disease patients with similar (but not the same) infections do quite well on the treatment program, so there is no reason why ALS patients should not be treated for their infections. We have a long way to go to be able to reverse possibly permanent damage to the CNS, but such treatments may be valuable for many patients to alleviate morbidity and slow or prevent disease progression. For patients or family members that would like further information, they can contact me at gnicolson@immed.org. Prof. Garth Nicolson The Institute for Molecular Medicine Huntington Beach, California (16) ===== for sale ========== >From : "Peggy Witkowski" Subject: for sale Date : Sun, 18 Mar 2001 I LOST MY WIFE PEGGY ON FEB 3 2001. I HAVE HER POWER WHEELCHAIR THAT WE GOT. BUT IT WAS A LITTLE TOO LATE. SHE ONLY GOT TO USE IT ONCE. WHAT I HAVE FOR SALE IS INVACARE RANGER II MID WHEEL DRIVE WITH TILT AND SPACE SEATTING, ROHO LOW PROFILE PRESURE CUSHION, HEAD REST, T FOAM BACK CUSHION, MIDLINE JOYSTICK CONTROLS WITH A U SHAPE HANDLE. NEVER HAS HAD THE BATTERY CHARGER HOOKED UP TO IT. SHE WAS A SMALL WOMAN SO THE THE SETUP IS FOR A SMALL PERSON. WE PAID OVER $11,000.00 FOR THE CHAIR. I AM ASKING $7,500.00 OR BEST OFFER. THANKS, AND GOD BLESS YOU LEO WITKOWSKI leow@hci.net 828-584-4916 (17) ===== re: communication devices ========== >From : Lisa Murphy Subject: RE: Communication Devices Date : Tue, 27 Feb 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 === end of alsd 842 ===