--------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: CCH00000 Date: 08/11/95 From: BOB LANTRIP Time: 07:10am \/To: WARREN KING (Read 2 times) Subj: Re: Lurking |------------------|Warren King wrote: WK> WK>Saw your message to me in ABLENews and decided to reply here. :-) I WK>am still around. Much more of a lurker than a poster in the last few WK>months. I got a part-time job that has me pretty tired by the time I WK>get home. Lucky just to be able to scan thru the mail areas much less WK>have the energy to think out a post. The way things are going in most WK>of the echoes, the argumentative are taking over and you really have WK>to have a well reasoned response if you don't want to get clobbered by WK>these jerks. That takes more than I am willing to give most of the WK>time. I have nearly 700 conferences on HandiNet, too many to keep up WK>with. I regularly read only about 30 of them myself with just an WK>occassional scan of the rest, and that usually when a reader complains WK>of a problem. Wow, 700! I only have about 100 and can't find time to read them all. Like you, I tend to browse most of them and only read the ones I'm most interested in. Sad about all the flaming isn't it? It seems to be happening more and more all the time and in echos that you wouldn't expect it. I also think more and more people are going to the internet and leaving Fido behind. That's one reason things are so slow around here. We seem to have 4-5 regulars and a lot of guys, like you, who come around every now and again. :) WK>To bring back to topic, I am still attending our informal get-together WK>every month of PPSers. There are about 6 of us who meet for lunch at WK>a different location on the 1st Sat. of each month. I hear there is WK>an effort to establish a formal PPS support group in one of the WK>neighboring cities, Newport News. I had to miss their organizational WK>meeting because of a prior conflict in scheduling. Haven't heard WK>anything from them since. I sure wish we had something like that around here. The nearest support group to me is 100 miles south in Dallas. I take their newsletter and every month I tell myself I'm going to attend a meeting, but that's as far as it gets. Just too far to travel, especially in this heat. Sure is good to hear from you. You've always been one of the most supportive people around here. Keep in touch. Hugs...Bob ... Quick!! Act as if nothing has happened! --- * Tag-X Pro v1.20 * --- FD 2.02 - RA 2.0 - FE 1.4 * Origin: IRONSIDES BBS - Ardmore, OK. - 405-226-7126 (1:19/131) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: CCI00000 Date: 08/10/95 From: TOM BENGAFF Time: 12:26pm \/To: ALL (Read 2 times) Subj: Bergen County, NJ Housing Phil Hochman has asked the Record, the local Bergen County, New Jersey-based newspaper (though it reports and writes editorials about statewide issues as well) to consider publishing an article, or a series of articles, about the scarcity of longer- term housing opportunities for persons with severe disabilities (physical or psychological). The newspaper staff writer with whom Mr. Hochman spoke expressed a certain interest in this topic but said she would need to be persuaded that the relative lack of housing prospects amounts to a substantial problem for the considerable number of countywide persons with severe disabilities who reside in Bergen County and neighboring areas, particularly those of us persons with disabilities who due to reasons of disablement - have no choice, at least for the time being and until something better or at least as suitable comes along, but to reside with aged parents and/or other family members (who constitute for all intents and purposes the entire family support system for such disabled individuals). Mr. Hochman would like anyone similarly concerned / confronted with such a housing predicament (or the caretaker of such person) to contact him and leave the usual personal data (i.e., name, address, age, and telephone number). Armed with this information, Mr. Hochman will strive to convince the Record that housing is indeed a primary unaddressed concern for persons with disabilities in Bergen County, New Jersey and no doubt statewide. Hopefully, through such an article, agency providers, legislators, and expert individuals in the housing field might be prompted to do something concrete and, one hopes, creative to serve the disabled community. . . You may reach Mr. Hochman by leaving a message for him in DEN BBS (he regularly looks for incoming messages) or by phoning him at DEN, phone:201-342-6984. The sooner you contact him, the better. It is hoped that the article can ultimately be published by October. * OLX 2.2 TD * DEN BBS, Hackensack, NJ, 1:2604/305, 201/342/3273 --- FLAME v1.0 * Origin: DEN BBS - Hackensack, NJ - (201)342-3273 - (1:2604/305) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: CCM00000 Date: 08/15/95 From: WSOP@AOL.COM Time: 03:09pm \/To: TOM MCKEEVER (Read 5 times) Subj: Participants for Post Polio/HGH Study NOTE: This message was originally in conference "INTERNET - E-MAIL AREA" and was copied here by Tom Mckeever. From: WSOP To: Multiple recipients of list POLIO Date: Tue, 15 Aug 1995 15:09:37 -0400 Subject: Participants for Post Polio/HGH Study Organization: America Online, Inc. (1-800-827-6364) I will be new to most of you, as I have not been posting much, but I have been lurking for about six months and have learned much. I'm glad this group is here. I attended a siminar on HGH (Human Growth Hormone) in Las Vegas, sponsored by Eldorado Clinic, about 4 weeks ago. The following week I started on HGH therapy. Cost for the therapy is *not* cheap, usually about $13,000 a year. I was the first PPS in Vegas to start the treatment, and maybe the first in the country. My doctor (Dr. Yee), was very excited about the possibilities of this treatment, considering my condition, so I suggested that he check out the possibilities of a federal grant, as he is also a professor at UNLV ("always nice to be published" I thought). I indicated how good this could be for his career. He was even more excited and is looking for funding for a study now. He asked me if I thought I could contact enough interested PPS's to select about 12 males who meet the criteria (no cancer, low HGH levels, no diabetics, etc.) This is all very preliminary so forgive me if I don't provide all details now. They will come later once the funding is in place. I said that I thought that I could find sufficient interest through an Internet PPS group. BTW, I have been on the hormone, and have prepaid for 13 weeks. They generally suggest that patients take the hormone for at least that period of time. I will, therefore, not be a part of the study group. This is because my experience would not be objective having taken HGH already and having formed an opinion. In fact, it would be improper for me to even discuss my opinion here so please don't ask until the study is complete. The study would be a double-blind or a double-blind-switch. Six participants would receive the real thing while six would receive placebo treatment. Participants would have to be available for an initial testing in Las Vegas and some follow-up testing later (EMG and the like). It is undetermined at this point, but the follow-up testing could be in your home town. Dr. Yee's initial plan was to offer half price to the participants and I indicated that I could not be part of that (due to the fact that half price is still too much for most people), and would only assist if the treatment was free (outside of travel expenses for participants). I suggested that if the drug company could fund some, there might be other groups willing to fund the remainder. I went on to suggest that I could make a strong case that the drug company would be crazy not to fund the whole thing. He agreed to try for that, and asked that I test the Internet waters for interest now. So you will know, some HGH studies show: Improved Sleep Lower body fat % Higher lean muscle % Reduced fatique (increased exercise tolerance) Improved bone density Improved muscle strength Thicker skin (skin thickness declines with age, normally) Increased sex drive There are others, but this should be sufficient until I am able to put together a detailed information package (listing the specific studies) for interested parties. I will also pass on the details of the proposed PPS study, once this is all formulated by Dr. Yee. The primary purpose of the study is to determine whether, through HGH therapy, muscle strength and/or endurance can be improved in people with PPS. Also, I want to state that I am not going to be paid for my assistance in finding participants for this research. I only want to see the research happen. I can afford it, but many can't. If this research proves effective and insurance carriers are eventually required to pay to the treatment (and obviously this could take years - FDA approval and all), then I will have the reward of knowing that I helped other PPS people (not to mention I will then get mine through insurance coverage). If it proves ineffective, then I've wasted a little of my time and yours. Seems like a great bet to me. If you have interest in participating in this study please Email me directly so as not to waste bandwith on something that may not interest everyone in this group. Any funding suggestions, or other helpful comments would also be appreciated. Thanks, Jim Albrecht wsop@aol.com --- WILDMAIL!/WC v4.12 * Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO. 1:374/22.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: CCN00000 Date: 08/16/95 From: TOM MCKEEVER Time: 06:10pm \/To: ALL (Read 3 times) Subj: Elevated CPK? Greetings, All!! I had my quarterly Blood workup last week, right after a few days of fairly heavy work preparing for Hurricane Erin. I had been stuck cutting and putting up Plywood on all windows, and the ol' left-leg was REALLY into Ache-City (all night) and even the brace didn't help much.. Is it possible (and have any of you noted a siilar effect) that the forced-labor and Muscle cramps could have raised that CPK SMA to 270? Normally, it is a sign of a silent Heart attack or MI, but i prefer to think it was the exercise and cramps! :-) Thoughts??? Tom.. (tom.mckeever@mit.com) (ksc_admin@ids.net) SPACECON/BRAVEHEART BBS (1:374/22) (407) 459-0969 452-8969 453-5393 (1200-28800 Baud) (Home of INFOLOG, OTVIEW, & POST_POLIO and CARDIAC Echoes!!) WOW! 220 hours SLIP+SHELL INTERNET access for $25.00/mo.! (407)453-4545! * WCE 2.1G1/2037 * You haven't lived 'til you've done it with a polio surviv --- WILDMAIL!/WC v4.12 * Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO. 1:374/22.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: CCR00000 Date: 08/15/95 From: TOM BENGAFF Time: 10:17am \/To: PHIL HOCHMAN (Read 3 times) Subj: Bergen County, NJ Housing I'd be happy to be interviewed Phil. Didn't figure I had to reply but what the hey. By the way, I realized I put your msg out with my name on it but still haven't gotten any replies aside from Roe Kasper. Later. T --- FLAME v1.0 * Origin: DEN BBS - Hackensack, NJ - (201)342-3273 - (1:2604/305) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: CCS00000 Date: 08/19/95 From: TOM LITTLEPAGE Time: 08:21am \/To: BOB LANTRIP (Read 3 times) Subj: Re: Lurking -=> Quoting Bob Lantrip to Warren King <=- BL> We seem to have 4-5 regulars and a lot of guys, like you, BL> who come around every now and again. :) I try to look each and every message in this conference. There's been valuable information I've seen no where else, and several folks have offered helpful suggestions to problems I've encountered. I value this resource as an information media. For some folks, it's a great support network, other just like to visit. Still, I appreciate the information update on treatment and such everyone kindly posts. Still lurking ;) Tom ... The Lottery: A tax for people who don't understand statistics! ___ Blue Wave/QWK v2.12 --- WILDMAIL!/WC v4.11 * Origin: Di's Online Cafe - Mobile, AL (334) 661-8945 (1:3625/470.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: CCS00001 Date: 08/21/95 From: DAVID KSIAZAK Time: 05:34pm \/To: TOM MCKEEVER (Read 3 times) Subj: Elevated CPK? Do you have post-Polio? If yes relpy, if not reply anyway. --- WILDMAIL!/WC v4.12 * Origin: ALTERED ILLUSIONS Dayton, NJ 908-329-3216 (1:107/102.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: CCS00002 Date: 08/21/95 From: MARGARET KSIAZAK Time: 10:01pm \/To: ALL (Read 4 times) Subj: Post-polio If any polio survivors have U.S. Healthcare HMO, please let me know if you have had any problems getting treatment. I had some problems getting a referral to go to Kessler for treatment and had to go directly to the CEO of U.S. Healthcare last summer. I had success but I was wondering if anyone else has had difficulty especially with an HMO. --- WILDMAIL!/WC v4.12 * Origin: ALTERED ILLUSIONS Dayton, NJ 908-329-3216 (1:107/102.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: CCS00003 Date: 08/21/95 From: MARGARET KSIAZAK Time: 09:55pm \/To: ALL (Read 4 times) Subj: Post-polio If anyone out there is suffering from post-polio please send me a message. I do belong to a support group, but it would be nice to know some more people. I live in Franklin Park, NJ. Thanks. --- WILDMAIL!/WC v4.12 * Origin: ALTERED ILLUSIONS Dayton, NJ 908-329-3216 (1:107/102.0)