--------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: C2Q00004 Date: 02/19/95 From: LD WALKER Time: 08:16pm \/To: LES PARKER (Read 5 times) Subj: Fatigue Les, I sent a message to Bob Lantrip mistakenly, thinking he had mentioned severe fatigue associated with PPS, then found it was in one of your messages I had seen the reference to fatigue.....I'm still a novice on the echo and couldn't locate your message readily...am learning more now. Anyway, you mentioned that you seemed to rest apparently from one night's sleep. I seem to require two to three days of rest if I really overdo something, whether physical activity or just standing a very long time. I also have a very hard time waking after getting fatigued, doesthis happen to you? I still am able at this point to work full time as an electronic technician for the railroad. The job does require some degree of moderate physical activity, climbing up the dumps to get to equipment cabins, carry equipment, quite a bit of stooping and getting back up. Some days wear me out, my work is not all done at a bench as some tech jobs. Hope this finds you charging along, thanks for any insight about the fatigue. LD * SPITFIRE v3.5 --- FreeMail 1.10 alpha-3 * Origin: THE COUNTRY CLUB * WEATHERFORD,TEXAS 613-1834 (1:130/615) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: C2Q00005 Date: 02/19/95 From: LD WALKER Time: 08:07pm \/To: BOB LANTRIP (Read 3 times) Subj: Last message to you Bob, sorry, I had your message confused with one I had seen from Les Parker about the severe fatigue. I finally found the one from Les again.....still a novice at this echo business.....LD * SPITFIRE v3.5 --- FreeMail 1.10 alpha-3 * Origin: THE COUNTRY CLUB * WEATHERFORD,TEXAS 613-1834 (1:130/615) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: C2Q00006 Date: 02/19/95 From: LD WALKER Time: 08:23pm \/To: ANN COOK & BOB LANTRIP (Read 3 times) Subj: Swimming Pools Ann & Bob, I saw your comments about swimming pools and thought I might make a comment. For four years I had an above ground pool 15' X 2. I used so much electricity for air conditioning that I didn't really notice the additional cost for the pool, however the cost of chemicals is pretty high to keep it sanitized and filtered. The main reason I finally sold the pool was the tremendous amount of time and effort to care for the pool. I did have an automatic pool scrubber, but still had to scrub the walls manually and prepare for winter, then clean it for summer. The time and physical effort required just became too much. I stayed worn out form caring for the pool so much so that I couldn't enjoy it or derive enough benefit to continue to maintain it. The maintenance was much more of a problem for me than the cost....just thought you might like to know the other side of the story of pools. LD * SPITFIRE v3.5 --- FreeMail 1.10 alpha-3 * Origin: THE COUNTRY CLUB * WEATHERFORD,TEXAS 613-1834 (1:130/615) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: C2R00000 Date: 02/20/95 From: TOM MCKEEVER Time: 10:00pm \/To: LD WALKER (Read 3 times) Subj: Cardiac Echo Greetings, Ld!! While you were muttering to Tom Mckeever, <02/19/95>, you spake thusly: LW> Tom, reference your message of 2-14-95 concerning the Cardiac echo, I ave LW> requested it on the BBS I use, Country Club, in Texas. The SYSOP has aid LW> he will add it to the board. In addition to my diagnosis of PPS, I also Appreciate it, LD!! - it will take quite a bit of requesting to actually make it happen but it WILL be a busy one!! LW> have stable class 5 angina. I've had a heart cath and blackages of the LW> arteries was rulled out as a cause of the pain. I only get it with LW> physical activity past moderate, can still run about a hundred yards before LW> the pain starts and then its gone in a minute or less if I stop at that Wish *I* Could do that!! - Quad Bypass slowed me down.. LW> point. It shopuld be interesting to join the Cardiac echo, the doctors I CARDIAC is currently available on ADAnet, but have had some link prolems, mostly at this end!! LW> exceeds any problems I have with PPS or angina. Thanks for any info. LW> Nowif I can just figure out how to edit my typos, I'm still a novice at LW> this....... Not-to-Worry!! - We ALL toss typois!! (see??) :-) Take care!! Tom.. (tom.mckeever@mit.com) SPACECON BBS (1:374/22) (407) 459-0969 452-8969 (1200-19200 Baud) (Home of UUCPlog, OTVIEW, & POST_POLIO and CARDIAC Echoes!!) **Try Florida Space Coast's CYBERSPACE Gateway at (407) 453-4545!** * WCE 2.014/2037 * PPS'ers Page: "http://www.eskimo.com/~dempt/polio.html" --- WILDMAIL!/WC v4.11 * Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO. 1:374/22.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: C2S00000 Date: 02/20/95 From: ANN COOK Time: 07:00am \/To: LESLIE PARKER (Read 5 times) Subj: Polio History Hello Les. LP>AC> I am on Disability also. I'm just glad that SS finally reconized LP>AC> that PPS was a Disability..... LP>Mine wasn't really diagnosed as PPS, but when I tested at 30% LP>respiratory capacity for my size, I guess they had a hard time LP>saying "No." It's surprising how many physicians, PTs, etc. Still LP>don't regard PPS as a valid condition. It's to new....HAHAHA It's only been around for 10, 15 years...LOL LP>AC> LP>its support for granted. When walking, I have to think about it LP>AC> LP>and exert myself to keep from going down. LP>AC> I know that feeling well. It is a mental stain to get the muscles to LP>AC> work. I have found that if I am walking...if I stop for a moment or wo LP>AC> the muscles do relax and then I can go on for a little longer. They LP>AC> seemed to tense up from the strain as I walk.... LP>I've too often envied people who don't have to think about what LP>they're doing, but I think it's made me more flexible in the way LP>I think about things; you know, how do I do this most efficiently LP>or safely, or do I do it at all? I didn't realize how much I had to think about the movement until I knew that I had PPS. I have always had to do it so I thought it was normal for everyone..HAHAHA Now as I lose more and have to think more is when I realized how fortunate others are.... LP>AC> It seems to me that my mind is working overtime now that my body AC>doesn't co-operate as well as it useto. LP>Sometimes I think it operates too much for its own good. It does and then I pay for it later..... LP>AC> That it is and has always been....we just have to work at it a little LP>AC> harder..... LP>Do you ever feel like no matter how hard you work, you LP>could/should work a little harder yet? Waxing philosophical, I'm LP>often surprised at how many people diminish their capabilities. Sometimes it makes me mad to see people that have just a little pain giving into it....We seem to always want more...that's the kind of people that Polio Survivors are...At least most of the ones that I have talked to...We are the movers and shakers of the world you know...HAHAHA LP>All my life I've heard how people admire me for my strength when LP>I just thought I was doing what was necessary. We do, I guess that the ones that know we have to work harder to do the regular things are the ones that admire us... LP>AC> I am a writer too...What do you write??? I haven't written in a while LP>AC> now. I lost my husband and now I have remarried so my life has made a LP>AC> lot of changes and I can't seem to get into the right Mind frame to LP>AC> write...Expecially re-writes...Yuck.... LP>A novel, short stories, and too much poetry. I've written very LP>little since I got sick a couple of years ago. I started another LP>novel, but somehow I no longer have much desire to communicate, LP>and that was the basis of my writing. As for re-writing, that's LP>probably my strong point. If nobody in the echo objects too much LP>to Political Incorrectness, maybe I'll post a poem of mine called LP>Cripple? It's not my best, but it's honest, or at least honest to LP>my experience. I'm sure that they won't mind...I have posted a article that I wrote when I first got PPS and they put it in the files for everyone to see...I was very proud to know that they liked it.... LP>AC> I am a sun worshipper too..But I love the rain...just not as much LP>AC> Oregon gets..HAHAHA. LP>Who does? Actually, we haven't had a great deal to complain about LP>for quite a few years. In fact, every year in recent history they LP>talk about drought and how far behind normal rainfall we are. I LP>think they established the Flood as a normal year, and this LP>winter we've returned to normal. When I heard some hammering last LP>week, I looked around the neighborhood and saw a guy with a LP>hammer and a lot of animals in his yard working on a big boat. I think from the weather report I see from your area, that you should ask him if you could hitch a ride...HAHAHA LP>AC> The rain drumming on your head probably doesn't dim LP>AC> the wits, but causes you to stay in and get "Cabin Fever" Sound about LP>AC> right????? {:) LP>Well, this isn't really cabin fever; I lived in Juneau, Alaska LP>for a while. Now THAT was cabin fever. I swore to myself if I LP>ever moved again, it would be SOUTH! I know that I get cabin fever here, can't imagine how bad it would be up there...I talk to one guy from Juno and he has been telling me about some of the things that go on around there...I don't envy him at all..... LP>AC> Good to hear from you and don't stay away so long next LP>AC> time.....Hope you have a wonderful day today and a better one LP>AC> tomorrow...Talk to you soon....See ya... LP>You, too, We went to a lake yesterday and walked around a little...I love the water, any kind...We had 70's Sun and supposed to have them for a few days more....I love it.... * OLX 2.1 TD * LAUGH! I thought I'd Die (if I didn't) --- WM v2.04/92-0643 * Origin: WILDMAIL! A.L.T. BBS (318) 687-8912 (1:380/64) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: C2S00001 Date: 02/20/95 From: ANN COOK Time: 07:11am \/To: TOM MCKEEVER (Read 3 times) Subj: Cardiac Echo LW>stable class 5 angina. I've had a heart cath and blackages of the rteries LW>was rulled out as a cause of the pain. I only get it with physical activity Does this sound like a lot of others that we know to you? I really am begining to wonder about the heart thing...I think it might be related....What do you think about maybe the poor circulation that most of us experience might have something to do with most of us having heart problems????? LW>multiple chemical sensitivity, I have a severe problem wit LW>an LW>allergy to any scented product. I have problems with chemical sensitivity too and it gets worse with age...Are you having any problems in this area??????? * OLX 2.1 TD * Just because I do suffering well doesn't mean I have to. --- WM v2.04/92-0643 * Origin: WILDMAIL! A.L.T. BBS (318) 687-8912 (1:380/64) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: C2S00002 Date: 02/20/95 From: ANN COOK Time: 07:19am \/To: LD WALKER (Read 4 times) Subj: PPS fatigue LW>completely pooped for a few days. Was it you who mentioned the extreme LW>fatigue associated with PPS or wasw it another contributor to the echo? I LW>remember seeing a comment about it and wanted to ask some more about the LW>fatigue. Since I have lost no use of any functions, was interested if anyon LW>else so fortunate or nearly so as far as loss of function is concerned has LW>dealt with fatigue and if so how have you progressed? Will look forward o LW>your reply or replies from others. Hi LD, Most of us have the extreme fatigue. I have had PPS for over 10 years now...I have not lost as much function as some have...And thank God, mine does not seem to be progressing as fast as some....I was told to limit my activites and rest a lot...maybe that is the reason...Some stupid Dr. told some to excercise to strenthen the muscles....that is a diffinate NO....NO. They told me to reserve my muscles as much as possible. It seems to be helping....I still can walk, but I limit the amout of walking that I do....You don't notice that you are losing some muscle power, the thing that you feel is the extreme fatigue......If you want to ask some guestions, feel free to do so...If I don't know, someone else will and if they don't we will find the answers somewhere for you.....This conf..is a very good one, filled with wonderful people that are here for you.... * OLX 2.1 TD * Steal this tagline, and you're gonna get a spanking. --- WM v2.04/92-0643 * Origin: WILDMAIL! A.L.T. BBS (318) 687-8912 (1:380/64) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: C2S00003 Date: 02/20/95 From: LESLIE PARKER Time: 10:30am \/To: LD WALKER (Read 4 times) Subj: Fatigue Hello Ld! In a message to Les Parker <02/19/95> Ld Walker wrote: LW> Les, I sent a message to Bob Lantrip mistakenly, thinking he had mentione LW> severe fatigue associated with PPS, then found it was in one of your LW> messages I had seen the reference to fatigue.....I'm still a novice on th LW> echo and couldn't locate your message readily...am learning more now. LW> Anyway, you mentioned that you seemed to rest apparently from one night's LW> sleep. I seem to require two to three days of rest if I really overdo LW> something, whether physical activity or just standing a very long time. Fatigue mostly manifested with difficulty in breathing for me. After a night's rest using a respirator, I could usually function the next day, but if fatiguing conditions were allowed to continue for several days, I found it difficult not to lie around for several days recouping my reserves. I also found that it didn't have to be physical exertion alone to exhaust me. I worked as a programmer for several years. Since I'm not a natural born programmer and do no really enjoy programming, whenever I was working on a project, I would find myself having difficulty breathing after six or eight hours of programming. LW> also have a very hard time waking after getting fatigued, doesthis happen LW> to you? I still am able at this point to work full time as an electronic LW> technician for the railroad. The job does require some degree of moderat LW> physical activity, climbing up the dumps to get to equipment cabins, carr LW> equipment, quite a bit of stooping and getting back up. Some days wear m LW> out, my work is not all done at a bench as some tech jobs. I had a very serious case of pneumonia two years ago, and I've been on disability ever since. From what I know of PPS, if you are allowed to take it easy and give your body a chance to truly rest up, often the PPS symptons will disappear, at least until you over-exert yourself again. There doesn't seem to be any permanent damage from PPS as far as I know, but I don't think that issue has been resolved yet. I read an article several years ago that claimed over-use of some muscles could result in permanent loss of function. Polio damages or destroys bundles of motor nerves on the spine, called "horns" if I recall correctly; the article claimed that the more stress that was put on the remaining nerves, the more likely the chance of damaging them. If this is true--and parhaps PPS is related to this?--we've not been helping ourselves all these years by forcing our bodies to do what they are reluctant to do. Mind you, I'm not an expert in anatomy and physiology, I'm just passing along what I've read. There are even those who insist that PPS is not a real, distinctive phenomenon. But it seems to me we Polioers are the last ones who want to accept or admit that our condition is deteriorating, and if we are doing so and seeking help, there must be something real going on. The syndrome was diagnosed from reports, not vice versa. Anyway, time to back away from the podium and return to the topic at hand. I've found frequent fatigue to be one of the real determining factors of my life in recent years, but I've found it can be mitigated with the right behavior. I've found if I don't push my activities too far that I can avoid some of the fatigue, for example by taking a real break from what I'm doing, something like getting completely away from the task at hand after a few hours work. Maybe lie down, watch TV, read a book, sit in the sun, anything to take the stress off the system. This is one of the ways I've found to make surviving easier and more pleasant. It seems to me that stress plays a large part in PPS. I hope this helps and answers some of your questions. Take care, Les * WCE 2.0/2360 * When Nietzsche lost his mind, he lost his soul. --- WILDMAIL!/WC v4.12 * Origin: Ecclesiastes' Echo Chamber (1:356/5.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: C2S00004 Date: 02/20/95 From: BOB LANTRIP Time: 06:22am \/To: LD WALKER (Read 3 times) Subj: Re: Last message to you -=> Quoting Ld Walker to Bob Lantrip <=- LW> Bob, sorry, I had your message confused with one I had seen from Les LW> Parker about the severe fatigue. I finally found the one from Les LW> again.....still a novice at this echo business.....LD * SPITFIRE v3.5 No problem. I replied anyway. Hugs...Bob ... Insults should be written in sand; praise carved in stone. --- 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: C2S00005 Date: 02/20/95 From: BOB LANTRIP Time: 06:16am \/To: LESLIE PARKER (Read 4 times) Subj: Re: Polio History -=> Quoting Leslie Parker to Bob Lantrip <=- BL> wheelchair. Some in this echo have entirely given up their braces and BL> to full time wheelchair use. So far, I haven't had the guts to do at. LP> I will probably wind up in a chair again; it's too dangerous for LP> me to fall, since I can't break my falls with my arms, I usually LP> break them with my head or some other part of my body. I use a LP> chair now for going out, because I can't stay off the ventilator LP> very long, and the chair is designed to pack it. I hope you handle the use of a wheelchair better than I. Even though it gives me greater freedom in the long run, I still feel as if I'm giving something up and fight it like h***. Since I've been falling regularly for about 50 years now, I guess I've learned how. I seldom hurt myself and don't have to worry about hitting my head. That's the hardest part of me. Hugs...Bob ... Modeming? You are now entering the realm of the TWILIGHT PHONE!! --- FD 2.02 - RA 2.0 - FE 1.4 * Origin: IRONSIDES BBS - Ardmore, OK. - 405-226-7126 (1:19/131)