Date: Tue, 8 Nov 94 09:07:43 -0500 From: Bob Broedel To: Stuart.Neilson@brunel.ac.uk Subject: Re: ALS DIGEST BACK ISSUES =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#135, 15 October 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig'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 == == 360+ 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 == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Virginia Garzanti, RN 2 .. Help-ALS-Neurontin 3 .. Neurontin info request 4 .. Easy Paging Device 5 .. Tropical Medicine 6 .. Travel 7 .. Help my ill daughter! 8 .. Re: ALS/Lou Gehrigs disease 9 .. Re: ALS/Lou Gehrigs disease 10 . Neurontin 11 . help (1) ===== Virginia Garzanti, RN ========== As if we didn't have enough problems. For the last couple of years I have been the primary caregiver for my ALS afflicted wife. She fears institutions so I and two hired helpers have been taking care of her in our home. A registered nurse from a HMO has been visiting every two weeks for the last year or so. Guess what? On the 28th of July I was visited by the Florida Department of Health and Rehabilitation Services (HRS). Because of a report submitted by the RN stating that I have been terrorizing, starving, choking, and bloodying the nose of my ALS affilicted wife Carmen, I am being investigated to see if my name should be added to the Florida Directory of Abuse and Neglect! My claim is that I am guilty of none of the above listed items, but one is assumed guilty until proven innocent (contrary to what I was taught in high school). As I see it, if this could happen to a guy like me then it could happen to any other innocent caregiver. So the details of this tale may be of interest to others. No time just now, but in a future issue I will outline a sequence of events that led to these absurd charges. By the way ... the RN's report stated that my wife has multiple sclerosis . rgds,bro Editor, ALS Digest (2) ===== Help-ALS-Neurontin ========== Date : Tue, 11 Oct 1994 13:09:52 GMT Sender : "Clinical WANS: Design & Usage" : >From : phil garfinkel Subject: Help-ALS-Neurontin Any health care professionals who have information on combining Neurontin and Riluzole in the treatment of ALS please contact me at: philg@world.std.com. Your help will be greatly appreciated! (3) ===== Neurontin info request ========== Date : Thu, 13 Oct 1994 23:21:15 -0400 >From : wdt102@psu.edu (William D. Toy) Subject: ALS Support Group My mother is a Registered Nurse who is currently treating a patient with Amyotrophic Lateral Sclerosis. The drug prescribed is Neurontin (Generically called Gabapentin). The patient is reluctant to recieve such a new drug and needs to know that it is safe. Unfortunatly Neurontin is so new that they can only find FDA apporvals and technical litterature that the patient does not directly understand. Because of this, it has become my task to search out an ALS support group on the internet and request "Electronic Pamphlets" or other literature posted by such a group. If you might be so kind as to write back ASAP with the information I need, I would be very thankful. Thank you so very much for your time and consideration. Sincerely, Bill Toy (4) ===== Easy Paging Device ========== Date : Fri, 14 Oct 1994 22:37:32 -0400 >From : SadieJanie@aol.com Subject: Easy Paging Device Thought I'd share this with others who may need a very simple way for anyone with limited communication abilities to be able to page someone to let them know they need assistance.....from asking for a kleenex to letting someone know they've taken a fall. We bought my mother in law a Wireless Door Bell from Radio Shack. Cost was about $20. Range is about 80 feet or so. The patient only has to press a button and the receiver, worn by the caregiver, is notified by a bell sound. Both the signal and the receiver are about the size of a deck of cards and lightweight. Works great! My father in law can now go outside to work in the yard with some peace of mind and my mother in law can signal him whenever she needs him. Hope someone else finds this helpful. (5) ===== Tropical Medicine ========== Date : 13 Oct 1994 18:32:52 U >From : "Nancy Daunton" Subject: Tropical Medicine Another question to pose to you and the readers: Because of the rather unusual nature of my husband's ALS symptoms and progression, and because he has travelled so extensively, often in very rough conditions, in almost all Third World countries, several physicians, including his neurologist have suggested that he consult an expert in Tropical Medicine to see if by any chance he might have some very rare tropical disease rather than ALS, (or in addition to ALS). This suggestion is prompted by the fact that about 3 months after noticing neurlogical symptoms (foot drop, ataxia) he also had a bout of hepatitis that could not be identified. That has more or less resolved, but the thinking is that he may have picked up some weird virus, perhaps in Africa, that has lead to an autoimmune response causing the motor neuron problems. Since he also has some sensory (including proprioceptive - position sense) problems in the feet and legs, as well as terrible pain in the legs that is not controlled with Baclofen or Klonopin, it is thought that there might possibly be something else going on. Typically, there is little experience with tropical medicine in the States, but I wonder if anyone knows of a clinic with personnel experienced with third world tropical medicine here, or perhaps better, some way to access someone at the London School of Tropical Medicine, or the Institute in Amsterdam. Any information on the above or on any rare disease that includes motor neuron signs, some sensory signs, and liver problems (hepatitis) would be gratefully received. (6) ===== Travel ========== Date : 13 Oct 1994 18:14:49 U >From : "Nancy Daunton" Subject: Travel Do you or anyone else have any information or know of a source of informa- tion about resorts (and perhaps cruise ships) with good wheelchair access, perhaps that specialize in wheelchair - bound guests. My husband (who has ALS and is now confined to a wheelchair) and I would like to spend a month or two this winter someplace(s) that is/are warm, with good facilities for wheelchair people, including indoor and outdoor facilities, with pleasant surroundings for day excursions, and perhaps fairly near an ALS center with support groups so that if we needed medical or caretaker help, it would be available. Another possibility would be condos we could rent that are suitably set up for wheelchair people. I guess in the States we would be dealing with southern Florida or Arizona or Hawaii . Of course, there would be the whole southern hemisphere for warmth, but I don't know about the level of accessibility one would expect to find there, and I don't know if we can manage that long a flight. As far as a cruise is concerned, does anyone have experience with whether the ship motion is a problem for those with very weak axial/torso muscles? Also, the beds on most cruise ships are quite low and narrow, if I remember correctly - is this a problem? t Would appreciate any comments on cruises, pro and con, and advice on which lines and ships are best for the wheelchair passenger. Also, if anyone knows of a good travel agent who can recommend resorts, condos, or cruises for wheelchair clients, that would be most helpful. (especially if they have an 800 number!) I should note that we are very experienced travelers, having travelled on our own, sometimes camping, all over the world. We also have been on many cruises. But all of this was before ALS! So we are in need of advice from anyone with experience in handicapped travel. Thanks for passing this on and for all the good work you do, Bob, in editing this digest. Nancy (7) ===== Help my ill daughter! ========== Date : Wed, 12 Oct 1994 05:56:30 +0300 Sender : "Clinical WANS: Design & Usage" : >From : Phoenix Subject: Help my ill daughter! My name is Tanya, I'm 40, I want to meet an experienced doctor- psychologist,who can help and give a consultation to my 7-year daughter. Diagnsis: cerebral paralyse,light form, delay in mental and speech development. My address: ----------------------------------- - 433760 ROSSIYA - Ulyanovsk district - G. Kuzovatovo - UL. Elevatornya D. 2, KV. 21 - Tzyazeva Tatyana - ==== RUSSIA ==== ----------------------------------- (8) ===== Re: ALS/Lou Gehrigs disease ========== Newsgroups: sci.med >From : kolling@adobe.com (Karen Kolling) Subject : Re: ALS/Lou Gehrigs disease Date : Sat, 8 Oct 1994 17:00:19 GMT jzisfein@pipeline.com (Jim Zisfein) writes: >jime@ic.mankato.mn.us (Jim Engelen) wrote: > >>I am a 57 yr old male and have had ALS since 1974. >>Someone asked me if that was a record for longivity and >>now I am wondering as well. I just had an appointment >>at Mayo Clinic a few days ago and asked there but of > >That beats any record I know. The average life expectancy is >3-5 years. It's somewhat longer in the lower-motor-neuron-only >variant of ALS, but 20 years is extraordinary. I will bring up >the obvious question: was the diagnosis right? Multifocal There is a former high school football coach (I think) somewhere in the vicinity of Los Altos, CA who has ALS and has had it for quite a number of years (>= ten?). He is apparently severely hampered, so it doesn't sound like the alternative you mention. There was a tv program (perhaps only local) about him and his family and community within the past few years. (9) ===== Re: ALS/Lou Gehrigs disease ========== >From : yun@Glue.umd.edu (Yun Choi) Newsgroups: sci.med Subject : Re: ALS/Lou Gehrigs disease Date : 11 Oct 1994 19:55:57 -0400 In article <36virk$f3m@IC.mankato.mn.us>, Jim Engelen wrote: >I am a 57 yr old male and have had ALS since 1974. Someone asked me if >that was a record for longivity and now I am wondering as well. I just >had an appointment at Mayo Clinic a few days ago and asked there but of >course, no for sure answer. I was told however, that there was a >professor in the UK who may have been affliicted as long or longer than >I have. Any input will be appreciated. I quick peek at the Merck Manual which states 50% of patients die within 3 years of onset, 20% live 5 years and 10% live 10 years. A rare patient may survive for 30 years. It all depends on the type of ALS. The prognossis for Progressive Bulbar Palsy is especially poor with a life expectancy typically between 1 to 3 years whereas for Progressive muscular atrophy the progression is slower and survival for more than 25 years is possible. Regards. yun@eng.umd.edu 5 hrs 10' 39" W 39 deg 2' 9.7" N On ne meurt qu'une fois, mais on en profite longtemps. -Serre (10) ===== Neurontin ========== AP DATASTREAM WASHINGTON NEWS WIRE Tuesday October 11, 1994 FROM MEDIA TO SUBWAY, AMERICANS CAN'T ESCAPE BOOM IN DRUG ADS With AM-Drug Book By LAURAN NEERGAARD Associated Press Writer WASHINGTON (AP) -- From Sports Illustrated to the subway, Americans are being bombarded with ads for powerful prescription medicines -- a commercial boom that has drug companies smiling but doctors worried. ``Pretty soon they'll be on milk cartons and hot-air balloons,'' said Dr. William Jacott, whose patients have demanded prescriptions by name even before he diagnosed a disease. Suffering epileptic seizures? Fighting high cholesterol? Afraid your prostate is enlarged? The questions jump off the pages of newspapers and magazines. Drug companies say their multimillion-dollar ads make Americans better advocates for their own health. ``The decision to prescribe a particular medication is a shared decision between doctor and patient,'' said John Montgomery of Parke Davis, which last week advertised its new epilepsy drug Neurontin in several major newspapers. And the ads do advise seeing a doctor -- after all, the drugs are available only by prescription. But the American Medical Association says there's a fine line between educating and misleading vulnerable patients. Drug companies have always aggressively advertised over-the-counter medicines. But until recently, they marketed more powerful prescription drugs just to physicians. < parts deleted> Parke Davis last week followed Merck's lead, launching trial Neurontin ads in New York, Atlanta, Los Angeles, Chicago and Houston. If sales increase there, the ads will spread. Neurontin may be an alternative for some of the thousands of epileptics who last month abandoned its competitor Felbatol, which can cause liver damage and fatal anemia. Parke Davis, in fact, hired a publicist to push Neurontin when the Felbatol fiasco emerged. The Neurontin ads carefully emphasize that it has only a few, minor side effects. But the ads, which started production before Felbatol's problems appeared, don't specifically mention the competitor, Montgomery noted. Many drug ads, picturing smiling, healthy models, ignore side effects and the fact that drugs are appropriate for only certain patients -- or relegate that to medical jargon in fine print, the AMA's Jacott said. When patients miss the warnings and demand a drug, doctors have to spend a lot of time explaining why they disagree, said Dr. Jehan El-Bayoumi of George Washington University's medical center. ``It's very positive if people are more involved in their health care, but there can be a negative consequence to the more commercial packaging of drugs,'' she warned. (11) ===== help ========== ------------------------------------------------------------- Date : Mon, 10 Oct 1994 23:40:14 -0300 Sender : Neuroscience Information Forum : >From : Maria Augusta Soares Machado Subject: help ------------------------------------------------------------- PLEASE,IF YOU KNOW SOME CURE ABOUT ANY KIND OF TREATMENT ANYWHERE FOR MULTIPLE SCLEROSIS TELL ME. THANKS. SINCERELY. MARIA AUGUSTA E-mail augusta@omega.lncc.br -------------------------------------------------------------- === end of als 135 ===