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#14261 - 04/03/06 03:44 PM Post Polio
john55555 john55555 Member Registered: 03/31/06 Posts: 531 Loc: "'cross the alley from the Ala...	I read a post here..New Mobility..where a person wondered how many people on these boards have Post Polio Syndrome (PPS). How 'bout a head count? I got Polio in '49. Started feeling the effects of PPS about 20 years ago. Have gone from a Corvette to a wheelchair (power), and attempting to remain positive. Anyone else? Take Care, Johnny
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#14262 - 04/03/06 03:53 PM Re: Post Polio
MerryA MerryA Member Registered: 01/10/04 Posts: 10887 Loc: Tennessee	Welcome Johnny. PPS here. Polio in '62. PPS started in the mid-80's. Have gone from walking with braces and crutches to a manual chair and now a power chair. Merry _________________________ "I was curious. Since I'm not a cat, that's not dangerous." - Greg House 76.22.172.94
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#14263 - 04/03/06 05:11 PM Re: Post Polio
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Welcome Johnny, Polio orginally got me in 1955 at 16mos old, was in a iron lung for about 8months originally and again when I was 12 with my first bout of pneumonia. PPS officially Rx'd in 1980-81. Did the brace and crutches too till about age 13, Manual chair till age 27, Power chair user since 1981. Bi-pap machine at night since 2001, and last year or so during the day for "rest" periods. Hi Merry! take care, Donna
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#14264 - 04/03/06 05:49 PM Re: Post Polio
john55555 john55555 Member Registered: 03/31/06 Posts: 531 Loc: "'cross the alley from the Ala...	Hello, MerryA and Ladyheart. Well, 3 is a group as far as I'm concerned! It's a strange trip isn't it? I've worn a brace (right leg) since I left Newington Children's Hospital in '49. That's near Hartford, Conn. Now, in addition to the brace, I use crutches on occasion (out and about)..but mostly a power chair at home. I'm going to cut this short for now ..see you later! Take Care, Johnny
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#14265 - 04/03/06 10:48 PM Re: Post Polio
BillD BillD Member Registered: 05/29/03 Posts: 45 Loc: Southern California	Polio in early 1956 was about 3 months old. Had surgery for my ankle so it would not turn out. Have had a leg brace since then. Walked for years and 8 years ago got a 3 wheel electric scooter. PPS was diagnosed 8 years ago when I was getting tired while just doing regular things.
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#14266 - 04/04/06 05:52 AM Re: Post Polio
john55555 john55555 Member Registered: 03/31/06 Posts: 531 Loc: "'cross the alley from the Ala...	Hi, Bill D...Thanks for the post! Man, I hear you talking! Just placing all my weight on the left (good!) leg to put Molecule's (my cat) food dish down feels like I've run a marathon..or what I imagine that would feel like! ) Take Care, Johnny / Polio '49
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#14267 - 04/04/06 11:33 AM Re: Post Polio
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Hi Johnny, Just wondered have you read Dr. Richard Bruno,'s book about polio and PPS. Before I got it I thought I knew all about polio and it's initial effects and PPS ,but after reading it, so much fell into place. I felt "validated" in a sense that what I was feeling for so long was not "all in your head" as I had been told. Anyway I have some online links for PPS info and support groups if you want to read more, e-mail me or send a PM if you want. Btw, there are several more male NM PPS'ers here too, but I will let them identify themselves if they want too, c'mon fellas you know that I know who you are, lol. Just kidding, a bit of humor does help once in awhile, take care, Donna
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#14268 - 04/04/06 11:58 AM Re: Post Polio
john55555 john55555 Member Registered: 03/31/06 Posts: 531 Loc: "'cross the alley from the Ala...	Hi, Donna If you're referring to "Polio Paradox", yes indeed I have! It is outstanding. I love his vivid description of the virus entering the body. I would highly recommend "A Nearly Normal Life" by Mees. This is easily the best first person Polio book I've ever read. As one "Amazon" reviewer stated "5 stars just doesn't do it justice." We all have a book in us. Mees (Charles I believe is his first name) put his on paper and takes you through his experience so well that you just can't put it down! Like a rib eye ought to be: really well done! Take Care, Johnny
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#14269 - 04/04/06 07:56 PM Re: Post Polio
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Yes Johnny, that was the one I was read, and he has another one that is an E-book, about Stress and PPS, "How to Stop being vampire bait" I would recommend it as well. The one by Mees I have not read, but will check it out at Amazon soon. And I totally agree that we all have a book in us, waiting to be written, in fact I have been doing some research slowly over the years, collecting stuff from my early polio days and one day would like to put it together in some way that would be of interest or help to others. Good night for now, take care, Donna
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#81071 - 06/06/07 08:18 AM Re: Post Polio [Re: john55555]
spinner spinner Member Registered: 09/30/01 Posts: 35 Loc: Silverton Oregon	Washington DC class of '52. It was all the rage, one out of three kids in our neighborhood got it. Used a lung, double leg braces, crutches, ended up back in a chair part time in '85 full time the last 10 years. It could be worse, Spinner
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#81158 - 06/06/07 04:50 PM Re: Post Polio [Re: spinner]
paradocs paradocs Member Registered: 11/20/04 Posts: 2323	Polio '54. Iron lung for two months, rocking bed for another two. Was never able to manage walking with braces and crutches so I have used a manual chair for over 50 years. I have never found a power chair I could transfer BOTH to and from. Some I can manage one but not the other, others I can manage neither. Since 2000 I have had to use a respirator when lying down.
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#81163 - 06/06/07 05:05 PM Re: Post Polio [Re: paradocs]
sodapop sodapop Member Registered: 02/18/05 Posts: 9486 Loc: new york	so many ppl PEOPLE gone...wtf to john555? he was nice. _________________________
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#81173 - 06/06/07 05:51 PM Re: Post Polio [Re: sodapop]
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Hi Spinner and paradocs, and hi to you too rob, have not been posting here for awhile but check in now and again, this thread caught my eye today. And yeah I have wondered about johnny too, hope he's okay and just having further PPS issues, take care, Donna
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#81180 - 06/06/07 06:32 PM Re: Post Polio [Re: ladyheart]
sodapop sodapop Member Registered: 02/18/05 Posts: 9486 Loc: new york	i miss chatting w/you, donna! _________________________
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#81750 - 06/14/07 07:48 AM Re: Post Polio [Re: john55555]
strungetta strungetta Junior Member Registered: 06/14/07 Posts: 1	I'm new here. It's nice to meet people who understand what I feel. I got polio in 1957. Wore braces until age 8. Then always walked slower and a little crooked. Chemotheraphy and radiation for cancer in 1991 brought on PPS. Then started to need a cane, then crutches, now a manual chair, sometimes a power chair and mostly my scooter to get out and enjoy life. I refuse to let PPS win. Barbara
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#81788 - 06/14/07 06:42 PM Re: Post Polio [Re: strungetta]
YosemiteSam YosemiteSam Member Registered: 05/20/00 Posts: 5386 Loc: No. Calif. (SF Bay Area)	It's be3een quite a while, but RedBaron was PPS (still is). I think Donna stays in touch with him. I miss kidding around with him. Come back Terry (if my memory serves me). ßoß _________________________ Bob
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#83926 - 07/08/07 07:39 PM Re: Post Polio [Re: john55555]
Sandee3535 Sandee3535 Junior Member Registered: 07/06/07 Posts: 11 Loc: Washington state	Johnny--did you ever have the polio shots or the sugar cubes? I had non-paralytic polio even after these two treatments--that was in 1956, when I was 10 years old. I appreciate the positive thoughts that many folks have. It just seems to help get through the day. Sandee3535 thank you for listening
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#83985 - 07/09/07 11:26 AM Re: Post Polio [Re: strungetta]
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Hi rob, been not posting here much recently, but miss chats too, time is limited as well as energy of course. Hi Barbara, there are several of us PPS'ers hanging around, been a power chair user for over 20+years now, if you want to PM or e-mail me feel free to. I like your refusal to let PPS win thinking too, Bob, have not heard from Terry aka Red Baron for ages now, should check on him, the group we were in together is not as active anymore since Yahoo closed it's chat rooms. I miss his lively wit for sure. Sandee, I read your other posts in the other forum, and sent you a PM too, take care, Donna take care, Donna
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#83989 - 07/09/07 11:58 AM Re: Post Polio [Re: spinner]
dashing dashing Member Registered: 08/31/01 Posts: 6633 Loc: home	Merry, I'm surprsed at the 62 date. It was rampant in the late 40's and early 50's. I remember getting innoculated and a follow-up sugar cube sometime before 1960. Different dates in different parts (was going to use states) of the country? dash
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#84006 - 07/09/07 02:03 PM Re: Post Polio [Re: dashing]
MerryA MerryA Member Registered: 01/10/04 Posts: 10887 Loc: Tennessee	Originally Posted By: dashing Merry, I'm surprsed at the 62 date. It was rampant in the late 40's and early 50's. I remember getting innoculated and a follow-up sugar cube sometime before 1960. Different dates in different parts (was going to use states) of the country? dash Yes, I had the vaccine and still caught it - must have been a bad batch. I recently found out that another child in my second grade class caught it - so probably either she gave it to me or I gave it to her. My brother and middle sister were also vaccinated when I was and I am convinced they had non-paralyic polio - we were all three sick the same weekend - same symptoms except mine included paralysis. The vaccine was developed in 1954 - the year I was born. I was vaccinated with the shot in 1958 or 1959. Then all four of us kids were vaccinated again with the sugar cube in the mid-1960's - my parents were afraid I would catch it again or that the others would since the shot didn't work on me. _________________________ "I was curious. Since I'm not a cat, that's not dangerous." - Greg House 76.22.172.94
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#84050 - 07/09/07 07:01 PM Re: Post Polio [Re: MerryA]
dashing dashing Member Registered: 08/31/01 Posts: 6633 Loc: home	My sister born in 51 and Aunt caught it the same time two neighbor children did. The other children were paralized. They thought my older sister was very lucky, and was. But, when a teen was diagnosed w/ a back problem they related to the illness. Sorry. Murphy's Law seems to have caught you too. I always felt those born after 54... dash
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#84243 - 07/11/07 03:16 PM Re: Post Polio [Re: MerryA]
john55555 john55555 Member Registered: 03/31/06 Posts: 531 Loc: "'cross the alley from the Ala...	Here's a tip for fellow PPS'ers. If it hasn't started already, you might start getting neck pain late in the day as those muscles start to go. That's been happening to me over the past few months. I invested in one of those cheap neck braces you can get at Walgreens. The Velcro / cloth type. Wear that at the computer, reading, etc. for a while during the day. It really improves things. :O)
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#84244 - 07/11/07 03:24 PM Re: Post Polio [Re: john55555]
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Thanks Johnny, for the tip, yeah I too "hit the wall" during the late afternoons too. I have a head rest on my power chair, but it's not comfortable while at the dinner table eating. Hard to explain, but having my head back or in tilt mode isn't all that "functional", more for resting. Hope that makes sense, take care, Donna P.S. To dashing Donna, I got polio in August of 1955, being only 16 months, the vaccine which went into use in April of that year, primarily was given to school age kids first not babies.
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#84249 - 07/11/07 04:47 PM Re: Post Polio [Re: ladyheart]
john55555 john55555 Member Registered: 03/31/06 Posts: 531 Loc: "'cross the alley from the Ala...	It does indeed make sense. The only up side to this..if there is one!..is that it's gradual. Relentless, but we have a "heads up" so to speak. I don't know if that's good or bad, Donna.
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#84277 - 07/12/07 07:28 AM Re: Post Polio [Re: john55555]
MerryA MerryA Member Registered: 01/10/04 Posts: 10887 Loc: Tennessee	I have constant neck pain, some days worse than others. Thanks for the tip - it makes perfect sense that it would help because the pain is worse the day after I have spent a long session at the 'puter. _________________________ "I was curious. Since I'm not a cat, that's not dangerous." - Greg House 76.22.172.94
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#84296 - 07/12/07 09:06 AM Re: Post Polio [Re: MerryA]
john55555 john55555 Member Registered: 03/31/06 Posts: 531 Loc: "'cross the alley from the Ala...	Other places have them, MerryA..not just Walgreens. They attach with velcro and last forever. Also work well on trips. Be you driver, passenger or strapped to the luggage rack..it works like a charm!
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#85731 - 07/31/07 10:09 PM Re: Post Polio [Re: john55555]
Linda D. Linda D. Junior Member Registered: 06/27/07 Posts: 1 Loc: Displaced Texan Living in Okla...	Another Polio Survivor here. I caught Polio at the age of 15 months in 1954. After 17 ortho surgeries I was down to one leg brace and crutches (canadian canes.) I had 10-12 "good years" after my fullest recovery. Began to have problems in 1978 and finally diagnosed, by Dr Carlos Valbona, in 1989. I was immediately but into a mobility aid and for the past 10 years I have been in a Rehab Power Chair. Linda _________________________ Linda
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#85803 - 08/01/07 02:31 PM Re: Post Polio [Re: Linda D.]
Paul I Paul I Member Registered: 02/24/00 Posts: 7913	This is an interesting thread. We SCI perhaps have little understanding of the progression that post Polio folks go through. I was in college with a number of post polio folks back in the 60's and it makes me wonder how they are doing. PI _________________________ "...only the shadow knows"
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#85820 - 08/01/07 03:13 PM Re: Post Polio [Re: Paul I]
YosemiteSam YosemiteSam Member Registered: 05/20/00 Posts: 5386 Loc: No. Calif. (SF Bay Area)	Welcome aboard, Linda. I have MS, another progressive disease. ßoß _________________________ Bob
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#85826 - 08/01/07 04:06 PM Re: Post Polio [Re: YosemiteSam]
paradocs paradocs Member Registered: 11/20/04 Posts: 2323	Paul I: Where were you in college? In the 60's, I was in college in Houston, Texas. If you weren't, then I am not one of the post polios you remember from then.
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#85833 - 08/01/07 04:37 PM Re: Post Polio [Re: YosemiteSam]
sodapop sodapop Member Registered: 02/18/05 Posts: 9486 Loc: new york	Originally Posted By: YosemiteSam Welcome aboard, Linda. I have MS, another progressive disease. ßoß i thought you were a quad. shows how much i know. roooob! _________________________
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#85907 - 08/02/07 12:53 PM Re: Post Polio [Re: paradocs]
Paul I Paul I Member Registered: 02/24/00 Posts: 7913	Paradocs, Univerity of Illinois. I do have a PP classmate who lives in College Station. Guess it's not that close to Houston. PI _________________________ "...only the shadow knows"
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#85917 - 08/02/07 03:12 PM Re: Post Polio [Re: sodapop]
Lola Lola Member Registered: 03/17/05 Posts: 5944	Originally Posted By: sodapop Originally Posted By: YosemiteSam Welcome aboard, Linda. I have MS, another progressive disease. ßoß i thought you were a quad. shows how much i know. roooob! i also thought bob was a quad, go figure!
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#85919 - 08/02/07 03:28 PM Re: Post Polio [Re: Paul I]
flicka flicka Member Registered: 04/06/00 Posts: 24616 Loc: SLO County, CA - 66.122.77.142	Originally Posted By: Paul I I was in college with a number of post polio folks back in the 60's and it makes me wonder how they are doing. PI My cousin who is the same age as me, caught polio as a child. The last time I saw him he was busy ruining his shoulders trying to stay on his feet. He also had to hire an attorney to retain his job...he is a Lutheran minister! _________________________ "A lot of things were acceptable--until we stopped accepting it." -- Al Sharpton '12
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#86013 - 08/03/07 10:38 AM Re: Post Polio [Re: flicka]
Ben T Ben T Member Registered: 07/30/07 Posts: 82	Polio got me in 1951 when I was 3. Spent a while in an iron lung, and started a career of surgeries and braces. I have always been stubborn, and typical of most Polio kids, I was never going to miss anything, or be told I couldnt do something. When I got out of high school, the counselers had a pretty pat choice of career paths for me. Watch making. I did study for a few months, but knew I did not want to sit at a bench for the rest of my life, so I enrolled in school, got my degree, and went to work for the Govt. and enjoyed an interesting and lucrative career. I got married, and had a family. We moved a lot, as my duty station changed at least every two years, and I always enjoyed the challenge of traveling and adapting to new places. PPS started to hit me about 8 years ago, and I had to revamp my whole way of living. Frustration and pain really put me in the dumps for a while. Once I realized that walking was not going to be an option , I found using a wheelchair liberating. The emotional upheavel of using a chair at work was difficult to say the least. I had been told all my life that I had to work harder than most people , and I forced myself all my life to keep up with the ABs. Now suddenly I find out that this is probably what is causing my physical deterioration. I had to learn how to change my whole way of thinking. Now I find out that is is common with PPSers, and it somewhat comforts me. I dont feel quite so alone. Not to say anything about polio is good, but it is nice to know that we are not alone, and others know exactly what we go through. Hello to my friend Donna. You were very helpful to me when I was going through a period of physical problems. I hope we can visit some more.
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#90048 - 09/12/07 11:37 PM Re: Post Polio [Re: strungetta]
cowboymom cowboymom Junior Member Registered: 09/12/07 Posts: 2	You folks are really scaring me...I had polio in 1956 at 11 weeks of age, I was born in May. The only place I had been taken was our local rodeo and I was in a buggy in a private box all day. From what I was told, I was suppose to die, fooled them. My right leg didn't have any long term paralysis. My left leg is toast. I tell people I have three muscles that work in that leg and two are in my toes. I went through the usual childhood hell of surgeries and castings. I always hated that visit to the ortho about March when he decided how I was going to spend my summer. If I was lucky, it was just a cast for six weeks to stretch my heel cord on my right leg. Otherwise it was some sort of surgery. I had a great orthotist. We have a cattle ranch and I was so surprised when an ortho that I hardly knew came up to me in a branding pen and apologized for how I was treated. He said that they didn't know and believed what they were told about children not feeling pain. I remember my mother telling my ortho to give me something for the pain and him telling her that I might get addicted. She asked him what was I going to do, go rob a grocery store? The reason I am looking around is that I have been basically been wearing the same KAFO since I was four. It is a bastardized brace with an ischial ring and a tibial shell. It is also made out of stainless steel that is 3/4 in by 3/8 inch bars. The weight has really never bothered me. This summer has kind of been rough on me, I pulled my thigh muscle getting out of our pool after swimming for two hours the first day, laps. I went to a sports medicine doctor who wanted to replace my hip. No. What an empowering word I learned when I was 18! I went back to my now regular ortho and he said my hips were fine, polio hips but great. Then I dropped a huge bottle of wine on my polio foot. I went to have it xrayed but the doctor couldn't tell if it was broken or not. That took about three weeks to heal. My thigh muscle is sore again because I rode for six hours two days ago and hadn't ridden since my swimming debacle. I will be ok, just takes time and I haven't stopped. What I was looking for was information if anyone had used the new Becker Stance control KAFOs? About ten years ago I went down to San Diego and had this new wonderful brace made. It worked off floor resistance and had a free swing knee. Worked wonderfully, as long as I walked on perfectly flat ground. However, we don't have much flat smooth ground. I wore it for three months and after no one said anything about, "Gee, you aren't walking with a stiff leg anymore!" I threw in it the closet because I was tired of having to look at the ground all the time and figure out where I was going to step. Takes too much time. We have a pool and I swim a bunch. Only since I have been hurt, I find myself not stopping when I should. I start to get sore and do a few more laps. The only concession I made was I don't climb out of the side of the pool anymore, I use the steps on my knees. I know I have lived my life hard. I showed horses for years, not just the pleasure horses, cutting and stock horse. These past four years have been hard on me. My mother and brother died and I ended up with this estate. I just thought it was the stress related to everything that has been going on. Now I am not so sure. I need to lose about forty pounds, lost about ten in the last two months but I better get on it. When I went to the local Doctor in the Box to get my foot x-rayed, the doctor told me that she could tell I was a person of affluence because how good my legs were. I told her, no, I just had a good team and a mother that made me do everything the doctor told her I should do! I remember a girl in grammar school that didn't want to wear her brace and her parents didn't make her. She has been on wheels for years. I have a real phobia about wheels. We went to Disney World a few years ago and I only rented a scooter at their Animal Park because it was seven miles across. We had spent all day getting there flying on Jet Blue piled in like a bunch of puppies. My hubby was back in the motel room with a sore back. I figured that there was no one there I knew and my kid was 13 and wanted to go everywhere. He talked me into a scooter and had him at a trot all day! First time I ever saw him tired in his whole life was when we walked out of that park! You have all given me incentive to get myself in the best physical shape I can get in. I think I will join a gymn I have been thinking about tomorrow. I have a lot more horses to ride and a lot more miles left in me. If anyone knows anything about the Becker Stance Control products, please let me know. My orthotist died a few years ago and the kid I have making my brace now just copies my old ones! There has to be a better way that will do more than get a person from that bed to the bathroom or my SUV brace! I can tear up a brace quicker than a little kid. When I was a little kid, it was about once every two weeks. My orthotist was so cool, he never yelled at me!
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#90054 - 09/13/07 07:18 AM Re: Post Polio [Re: cowboymom]
soda soda Member Registered: 08/26/07 Posts: 4726	wow, i nominate cowboymom for the LeoTolstoyAward of WebPosting. _________________________ 67.87.81.12
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#90062 - 09/13/07 10:41 AM Re: Post Polio [Re: cowboymom]
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Been awhile since I've checked in here, so I apologize to you Ben, for not saying "Hello" sooner, my friend. And yes we should keep in better contact. CowboyMom, I wish I had some info on the products you are seeking. You might try writing to Dr. Richard Bruno, for many of us PPS'ers, he's been our answer doc. I highly recommend his book "The Polio Paradox" it's been quite helpful to many in getting a better understanding of what polio actally "did" to us initially and how the late effects many of us are experiencing came about. By far the hardest "adjustments" to PPS, are the emotional and psychological aspects of re-examining our individual lifestyles in order to ensure a better quality of life down the road so to speak. Anyway, hello and welcome and feel free to PM or e-mail me if you would like, take care, Donna
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#90071 - 09/13/07 02:50 PM Re: Post Polio [Re: ladyheart]
cowboymom cowboymom Junior Member Registered: 09/12/07 Posts: 2	Sorry, if I offended anyone, I just type fast. I was just seeking information on a new brace and wondered if anyone had any experience. Thank you, ladyheart, I ordered that book from Amazon today. I was informed that since post-polio has been affecting active adults and sime they don't want to quit and give up, that there has been new research and new products out there. I was mainly asking if anyone had any information on these braces. For those of you that are failing, I feel sorry for you. I have seen it happen in my husband's family. He has a cousin who years ago could have still been walking today if she wore an AFO but she thought they were "ugly". Her husband, would ask me about it everytime he saw me. She would just dismiss me. If someone doesn't like my "ugly" brace, they don't have to look. I will wear and do what I want, when I want. I may not be the first one to the top of the mountain, but I will sure get there! To be honest, in my peer group, I am probably the healthiest one. Like my husband says, I may have had a rough start but the rest of them have passed me up! Yes, I get very scared when ever I get injured because I wonder if it is just a passing thing that will heal or is it the beginning of the end? Long as I have one muscle synapsing, I will keep going. I have figured out that wheelchairs are the mobility of choice on this forum. Has anyone been told of the dangers of not walking? Like my orthotist said, man was made to be weight bearing. Bone loss and muscle atrophy are only two of the serious side effects of sitting all the time. Don't worry, I will take my ugly, functional brace and trot on out of here.
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#90073 - 09/13/07 03:00 PM Re: Post Polio [Re: cowboymom]
flicka flicka Member Registered: 04/06/00 Posts: 24616 Loc: SLO County, CA - 66.122.77.142	Originally Posted By: cowboymom Don't worry, I will take my ugly, functional brace and trot on out of here. Why? Have we offended you? _________________________ "A lot of things were acceptable--until we stopped accepting it." -- Al Sharpton '12
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#90079 - 09/13/07 03:52 PM Re: Post Polio [Re: flicka]
soda soda Member Registered: 08/26/07 Posts: 4726	Originally Posted By: flicka Originally Posted By: cowboymom Don't worry, I will take my ugly, functional brace and trot on out of here. Why? Have we offended you? were you offended by my tolstoy reference? if you were, i meant no harm. if my intention was to insult you, i'd have gone w/dean koontz. really, i'm sorry. _________________________ 67.87.81.12
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#90080 - 09/13/07 03:57 PM Re: Post Polio [Re: john55555]
ParaDude ParaDude Member Registered: 03/22/00 Posts: 33855 Loc: United Provinces of America	Dang...Rob went and chased off another one... Quote: I have figured out that wheelchairs are the mobility of choice on this forum. Has anyone been told of the dangers of not walking? Like my orthotist said, man was made to be weight bearing. Bone loss and muscle atrophy are only two of the serious side effects of sitting all the time. Damn...if only I had known I would have gotten up out of my chair a lot sooner than this...yet another thing to worry about. _________________________
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#90082 - 09/13/07 04:43 PM Re: Post Polio [Re: ParaDude]
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Your welcome and I hope the book will be helpful. While a good percentage of the folks who come to this site are those living their lives on "wheels", the wide range of specific disabilities exist here also. I hope you will not let one or two comments keep you from seeking out information and or support in the future. take care, Donna
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#96110 - 11/15/07 04:24 PM Re: Post Polio [Re: john55555]
Nonniebee Nonniebee Junior Member Registered: 11/08/07 Posts: 3	Hello Johnny! Polio hit me in '59 & PPS in 2004. I was already disabled when the PPS kicked in. Now I'm really disabled.
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#96116 - 11/15/07 05:12 PM Re: Post Polio [Re: Nonniebee]
joyt joyt Member Registered: 04/16/01 Posts: 19345 Loc: AccessibleProperties.net	welcome, nonniebee! i'm a quad due to sci -
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#96121 - 11/15/07 05:31 PM Re: Post Polio [Re: joyt]
Lola Lola Member Registered: 03/17/05 Posts: 5944	welcome, nonniebee! i'm also a quad
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#96804 - 11/19/07 12:25 PM Re: Post Polio [Re: Lola]
MerryA MerryA Member Registered: 01/10/04 Posts: 10887 Loc: Tennessee	John55555 MerryA ladyheart BillD spinner paradocs strungetta RedBaron Sandee3535 Linda D. Ben T cowboymom Nonniebee Wow, that is quite a list of PPSers - where did they all go? _________________________ "I was curious. Since I'm not a cat, that's not dangerous." - Greg House 76.22.172.94
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#96838 - 11/19/07 02:12 PM Re: Post Polio [Re: MerryA]
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	am still here, kinda, sorta, sometimes, when the spirit moves me, or "red flags" pop out like PPS topics like this one. Hi Merry! take care, Donna
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#97925 - 11/25/07 08:50 AM Re: Post Polio [Re: ladyheart]
ted4753 ted4753 Junior Member Registered: 11/25/07 Posts: 2	Hello all. I am a polio from 1953. Came down with it about a month before my sixth birthday. I found out on my sixth birthday I was going to be getting braces rather than a bicycle I had been promised. I was not a model patient from that point. I spent the next ten years in braces until I quit wearing them in high school. I had to go back into short braces about 4 years ago after being told I should in 1999 when I was tripping over everything. Now facing the prospects of the future. Ted
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#97965 - 11/25/07 09:08 PM Re: Post Polio [Re: ted4753]
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Hi Ted, sorry for the circumstances that led you here to New Mobility but there are some fellow polio survivors here to share some "war" stories or to help find information and support. Many of us are facing PPS issues daily too, feel free to post as you feel comfortable or if you prefer send a PM or e-mail. take care, Donna
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#99017 - 12/14/07 03:53 AM Re: Post Polio [Re: ladyheart]
ted4753 ted4753 Junior Member Registered: 11/25/07 Posts: 2	Hi ladyheart, this is not the easiest thread to find. Thanks for the welcome. I guess it was not easy for any of us to find out braces were going to become part of our lives. It might have been better not finding out on my birthday. They were just not quite the present I thought I was getting. Still trying, Ted
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#99049 - 12/14/07 05:18 PM Re: Post Polio [Re: ted4753]
Robo410 Robo410 Member Registered: 02/07/01 Posts: 2999 Loc: steel: it does a body good	Forgot one, me. Apparently had inactive vaccine and got the bug in late summer 1970. Braces and crutches since then, wc for long hauls since 1995 and for teaching day to day too since 2003. My shoulders don't take much swing thru anymore. As for the ortho equipment, I find the new stuff (thermo plast etc) very uncomfortable and still use my old gear...leather breathes and there is a lot less steel around me than there was plastic. As for breathing, I should be tested for sleep apnea I guess. It is one of the first symptoms of returning problems.
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#99085 - 12/15/07 02:45 PM Re: Post Polio [Re: Robo410]
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	The John P. Murtha Neuroscience and Pain Institute, Johnstown, Pennsylvania , launched a online registry <http://postpolio.conemaugh.org> of polio survivors to promote research. If you have not registered with them, and would be willing to be a part of this research (which is minimal & may help other polio survivors), please click on the link above. Thank you.
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#99194 - 12/16/07 12:24 AM Re: Post Polio [Re: ladyheart]
MerryA MerryA Member Registered: 01/10/04 Posts: 10887 Loc: Tennessee	I need to get a sleep apnea test too - but I have so much trouble sleeping, I am afraid I will get there and lay awake all night. _________________________ "I was curious. Since I'm not a cat, that's not dangerous." - Greg House 76.22.172.94
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#129141 - 07/31/08 07:48 PM Re: Post Polio [Re: MerryA]
bren61 bren61 Junior Member Registered: 07/31/08 Posts: 1 Loc: MS	I have just found this site by reading The Polio Paradox, by Dr. Bruno. I had polio at age 3 was diagnosed with PPS in 1991 after experiencing new weakness and fatigue.
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#140326 - 11/17/08 03:00 PM Re: Post Polio [Re: bren61]
Zella Zella Junior Member Registered: 06/12/08 Posts: 7 Loc: NJ	I got Polio in 1958 at age 1. I'm a bit surprised by how many PPS folks there are out there that got Polio after the mid '50s. I spent most of my life thinking that I was the youngest! I walk with a KAFO and forearm crutches. I use a scooter outside and have recently had to start using a chair in the house to start saving my shoulders. Using the chair has really taken a toll on the rest of my body. I got deconditioned really quickly and now seem to have a harder time just doing normal things. I hate that in order to save my shoulders, I had to lose strength everywhere else.
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#140333 - 11/17/08 07:49 PM Re: Post Polio [Re: Zella]
YosemiteSam YosemiteSam Member Registered: 05/20/00 Posts: 5386 Loc: No. Calif. (SF Bay Area)	Welcome aboard, Zella. Seems like we have lotsa PPers here. _________________________ Bob
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#140381 - 11/18/08 04:10 PM Re: Post Polio [Re: YosemiteSam]
MerryA MerryA Member Registered: 01/10/04 Posts: 10887 Loc: Tennessee	Wow, I had forgotten there were so many PPSers around! Do you guys know there are more PPSers than SCIers and MSers combined? Makes you wonder why we don't get more press. _________________________ "I was curious. Since I'm not a cat, that's not dangerous." - Greg House 76.22.172.94
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#145566 - 02/03/09 09:46 AM Re: Post Polio [Re: bren61]
marylou marylou Junior Member Registered: 02/03/09 Posts: 1	Aren't Dr Bruno's articles great? They just really hit on all the important points. I'm new to this board but NOT to PPS and HOW to deal with it. I was Dx'd with PPS after breaking my leg in 1996. I found PPS HELP, friends and newsletter to give support with the life changing events thru the Post-polio.org folks. http://www.post-polio.org Their conference this year--- all about PPS--- is in Warm Springs Ga. Attending this conference was for me life changing and empowering. I 've attended 2 of the natioanl ones since my dx and met many people I stay in contact with. I feel I have been helped immeasurably in dealing with the changes in my life since 1996 by being a part of this group and attending a few national & regional conferences ! The international Post-Polio.org folks back the Murtha Neuro-center too. butting in from Six-burgh! marylou
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#145568 - 02/03/09 11:04 AM Re: Post Polio [Re: marylou]
MerryA MerryA Member Registered: 01/10/04 Posts: 10887 Loc: Tennessee	I am going to Warm Springs in April for the retreat and conference. I am excited and so hope they can help me with some techniques to deal with the fatigue, pain and over all crap that comes with PPS. Glad to hear it was beneficial for you Marylou! _________________________ "I was curious. Since I'm not a cat, that's not dangerous." - Greg House 76.22.172.94
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#146489 - 02/17/09 11:06 PM Re: Post Polio [Re: john55555]
LuckyEd LuckyEd Junior Member Registered: 02/17/09 Posts: 3	New to the board. original Polio 1951, my wife in '50. Margaret was around 45 to 50 for first sighs of PPS she went from our "pretend we are able bodied" to must KPO, crutches and fatigue within a year or two. I did not show signs until I was around 60. went from a single KPO to double and a walking stick...but can still play a good game of standing table tennis and keep up the house and I must really overdue before I note any mental/emotional/physical fatigue. I am truly a LuckyEd! I am checking out wheelchair life because I can see it coming as my "last" leg is going fast and I prefer the idea of a wheelchair to that of giving up those things I like to do. and yes...I wont have a leg to stand on...LOL Well that is my introduction. I will watch this board and jump in when I can. Be Happy Do not interfere with the happiness of others Help others be happy when you can Ed
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#146794 - 02/20/09 07:37 PM Re: Post Polio [Re: john55555]
bmbrooks bmbrooks Junior Member Registered: 02/20/09 Posts: 1	Hi John I also got polio in '49--in public swimming pool in Indiana. A big year for polio, '49. I was visiting Indiana from Baltimore. By the time I got back, on a train, I was unable to walk. In isolation for four months, then hospital for over a year. Braces on legs, spine, left arm. Walked again without braces at 15. Accident in which I broke my neck and lower spine brought on PPS as well. Surgery on neck went well. Lower spine--not so good. Have not stood upright or walked since '02. Brooksie
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#147354 - 03/02/09 09:18 PM Re: Post Polio [Re: john55555]
Terri Lee Terri Lee Junior Member Registered: 03/01/09 Posts: 10 Loc: Northern California	Hi! I developed polio at 22 months old, was playing with another little girl who had just been vaccinated days before. No one else in my family contracted it. I had what was then called "bulbar polio", got my spinal cord area, waist down. After several surgeries and years with bilateral braces and crutches, I finally walked brace/crutch free. About 6yrs ago I began to have muscle weakness on my mainly affected right side, leg. I am a nurse practitioner working 5 days a week/8-10hr days, on my feet. It takes it's toll on me. For other than office,I use my powerchair for going to store, attending conferences, etc, which makes me feel very free! I can go fast, wheel on uneven ground, gravel, etc, which until I got my chair 2 yrs ago, was a REAL challenge! I am back in a full length leg brace on the right. Went to PP clinic and they dx'd me with PPS. When they said I needed to use a brace, and showed it to me, it looked somewhat the same as when I was a little girl - broke down and sobbed...! I couldn't believe I was going to have to do that again! It has turned out to be what keeps me up and walking, keeps me from falling! It's turned out to be a great thing... once I got over having to return to it. Life goes on....! _________________________ If God had a refrigerator, your picture would be on it!!
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#147356 - 03/02/09 10:49 PM Re: Post Polio [Re: Terri Lee]
MerryA MerryA Member Registered: 01/10/04 Posts: 10887 Loc: Tennessee	Welcome to all the new folks! Glad you are here - sorry for the reason. Originally Posted By: Terri Lee When they said I needed to use a brace, and showed it to me, it looked somewhat the same as when I was a little girl - broke down and sobbed...! I couldn't believe I was going to have to do that again! I know - I cried for days when I realized I had to go to a chair after 30+ years out of one. The chair is the only way I can function though so thank God we have the technology! I am registered and have paid for retreat and conference in April in Warm Springs. Any one else from here going? _________________________ "I was curious. Since I'm not a cat, that's not dangerous." - Greg House 76.22.172.94
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#147359 - 03/03/09 12:45 AM Re: Post Polio [Re: MerryA]
LuckyEd LuckyEd Junior Member Registered: 02/17/09 Posts: 3	Remember the great times we had proving to ourselves and others that, despite the minor inconvenience of polio, we could do anything as well and often times better than anyone else! Well PPS is giving us another opportunity to once more overcome.......ain't life great! Be Happy Do not interfere with the happiness of others Help others be happy when you can Ed
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#147391 - 03/03/09 08:39 PM Re: Post Polio [Re: MerryA]
Terri Lee Terri Lee Junior Member Registered: 03/01/09 Posts: 10 Loc: Northern California	I read about the Warm Springs coference, wish I had the time and money to go! It is awesome talking with you all, feels good to be understood! My dh (dear husband)is upset at me right now because I just can't seem to trust my right leg in snow and on ice. "Why do you fight me" is his question when he feels he's helping..... With the brace... yes, hard to fall... but I have proven more than once that I still can fall, like a tree when you can't bend your knee. The ice is very scary for me to move on because there's nothing... I just feel my foot sliding whichever way it decides to go! Can't use my power chair from van to house... no ramp. We are trying to find an electric lift, but so far very expensive! _________________________ If God had a refrigerator, your picture would be on it!!
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#147392 - 03/03/09 08:48 PM Re: Post Polio [Re: Terri Lee]
Lola Lola Member Registered: 03/17/05 Posts: 5944	what about a portable ramp, terry?
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#147394 - 03/03/09 08:56 PM Re: Post Polio [Re: Terri Lee]
Terri Lee Terri Lee Junior Member Registered: 03/01/09 Posts: 10 Loc: Northern California	Actually... I just read my own note and realize I wanted to say we are praying for a van lift, not ground to house lift! Whoops! _________________________ If God had a refrigerator, your picture would be on it!!
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#147505 - 03/05/09 10:30 PM Re: Post Polio [Re: Lola]
Terri Lee Terri Lee Junior Member Registered: 03/01/09 Posts: 10 Loc: Northern California	I lol because I just noted in my note that I said that I had bulbar polio... opposite.. had paralytic polio... but then you all probably figured I was brain dead on that! Lola, thanks for writing to me! We do have portable ramps, at some time it will be hard on my dh to take them out and put them back in... on our "wish list" to some day have an electric one to make it easier on him, and faster... we live in snow country here in Northen California, so faster we can load in this seson, the better! Hope to hear back from you all! Terri _________________________ If God had a refrigerator, your picture would be on it!!
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#147506 - 03/05/09 10:31 PM Re: Post Polio [Re: Terri Lee]
Terri Lee Terri Lee Junior Member Registered: 03/01/09 Posts: 10 Loc: Northern California	I just noticed that I'm a "junior member"... what's that mean? _________________________ If God had a refrigerator, your picture would be on it!!
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#147507 - 03/05/09 10:46 PM Re: Post Polio [Re: LuckyEd]
Terri Lee Terri Lee Junior Member Registered: 03/01/09 Posts: 10 Loc: Northern California	I love your attitude! Keep jumping in there! _________________________ If God had a refrigerator, your picture would be on it!!
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#147537 - 03/06/09 04:05 PM Re: Post Polio [Re: Terri Lee]
paradocs paradocs Member Registered: 11/20/04 Posts: 2323	I believe "Junior Member" and "Member" are simply indications of the number of times you have posted. I don't know what the actual number of posts required to move from "Junior" to "Member" is, however. If I am wrong, I'm sure someone will correct me.
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#147539 - 03/06/09 05:19 PM Re: Post Polio [Re: paradocs]
sienna sienna Member Registered: 02/09/09 Posts: 213	The F.A.Q's says after 30 posts you are a Member.
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#147541 - 03/06/09 05:52 PM Re: Post Polio [Re: Terri Lee]
YosemiteSam YosemiteSam Member Registered: 05/20/00 Posts: 5386 Loc: No. Calif. (SF Bay Area)	Originally Posted By: Terri Lee I lol because I just noted in my note that I said that I had bulbar polio... opposite.. had paralytic polio... but then you all probably figured I was brain dead on that! Lola, thanks for writing to me! We do have portable ramps, at some time it will be hard on my dh to take them out and put them back in... on our "wish list" to some day have an electric one to make it easier on him, and faster... we live in snow country here in Northen California, so faster we can load in this seson, the better! Hope to hear back from you all! Terri Are you in Truckee or thereabouts? I'm in NorCal, but way below the snowline. Welcome to the board. Did you find New Mobility from Dr Bruno's PPS Forum in NM Magazine? _________________________ Bob
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#147611 - 03/08/09 12:26 PM Re: Post Polio [Re: YosemiteSam]
Terri Lee Terri Lee Junior Member Registered: 03/01/09 Posts: 10 Loc: Northern California	I'm in Susanville, Ca. We are at 4800'. Right about base of Diamond Peak.... today is actually feeling like spring! Looking forward to warmer weather.. though we do need the precip for dryer times. Are you around Grass Valley? Actually, think I was looking on line for PPS info and New Mobility came up... but not positive... love the magazine. I am toying with the thought of getting a use handcycle.... anyone out there have one? It would be a great way to exercise and get out in the sunny... or cloudy weather! I have my power chair, but, feeling the ablilty of exercising should be a nice change! I would like to ask if anyone else is irritated with all the able bodied people that are parking in the handicapped parking...? think my dh is even more irritated than me! He wants to get business cards that say something about "being..... doesn't count for a disability" don't want to offend those that this does not pertain to... if you are disabled, and I am, and could use those van parking places... and I'm not skinny.... anyway you get the picture, I pray you can give good ideas to add to the list! _________________________ If God had a refrigerator, your picture would be on it!!
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#147759 - 03/10/09 02:36 PM Re: Post Polio [Re: Terri Lee]
paradocs paradocs Member Registered: 11/20/04 Posts: 2323	This thread about disabled parking abuse got quite a few replies. http://www.newmobility.com/bb/ubbthreads.php?ubb=showflat&Number=92216&page=2#Post92216
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#147782 - 03/10/09 09:08 PM Re: Post Polio [Re: YosemiteSam]
Terri Lee Terri Lee Junior Member Registered: 03/01/09 Posts: 10 Loc: Northern California	Bob, didn't hear back... are you in or around Grass Valley? _________________________ If God had a refrigerator, your picture would be on it!!
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#148997 - 03/22/09 07:19 PM Re: Post Polio [Re: Terri Lee]
Terri Lee Terri Lee Junior Member Registered: 03/01/09 Posts: 10 Loc: Northern California	Is this a posted site or is it dead.. last time I wrote was the last posting... sad! _________________________ If God had a refrigerator, your picture would be on it!!
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#149461 - 04/01/09 02:35 PM Re: Post Polio [Re: john55555]
mgandy1010 mgandy1010 Junior Member Registered: 10/20/08 Posts: 3	Hey There... My name is Mark...I contracted polio in 1956 at age 2...was diagnosed with "post-polio" 15 years ago. Until that day I had never heard of post-polio nor was I prepared for what was to come.
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#149466 - 04/01/09 02:45 PM Re: Post Polio [Re: john55555]
mgandy1010 mgandy1010 Junior Member Registered: 10/20/08 Posts: 3	Yup LOL ...everything just seems to be failing one after the other...... last week Dr. diagnosed carpal tunnel on top of everything else...LOL mark
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#149494 - 04/01/09 06:37 PM Re: Post Polio [Re: john55555]
WadeH WadeH Junior Member Registered: 04/01/09 Posts: 1	Aloha All!! Yep, here in beautiful Hawaii. Got polio when I turned 5 in October 1958, not sure if its pps but noticed that I was feeling weaker in 2000, but it could have started earlier. Started to cut out some activities about that time. Back in '58 was paralyzed from the neck down. The treatment: wrapped in hot blanket than dipped into iced water, iron lung. Surgeries done shoulder and ankle fusion. On other ankle so drop ankle don't be as bad, wrist tendon re-position. Wore braces from the chest down, but went to not having any support braces in 7th grade to this day. Not able to use crutches because I can't support my body weight. Broke my shoulder twice, but bounced back quickly (pre 2000) now fractured knee and confined to a wheelchair in my home (collecting tdi)and not able to transfer chair to bed...... Trying to stay positive
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#149850 - 04/04/09 09:54 PM Re: Post Polio [Re: WadeH]
midwife4Him midwife4Him Junior Member Registered: 03/31/09 Posts: 1	Hey, Wade! You're going to make it! We all find THE way to do so, whatever that is... I'm back in full leg brace on right leg, except for work when I see patients.. I walk with the brace and a cane... I get around best in my power chair! Decided excepting it with a smile... knowing the alternative is to do nothing.... hang in there!
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#156637 - 07/09/09 12:48 PM Re: Post Polio [Re: john55555]
AnnieA920 AnnieA920 Junior Member Registered: 07/09/09 Posts: 3	I got Polio most likely from the vaccine as I had had my vaccines and boosters. There is a documentary that I watched on NetFlix that tells of a lab in California called "Cutter Lab" that distributed a Lot of tainted vaccines. An estimate of 200,000 children were infected. It was not commonly known. We knew of no one else in our neighborhood or family who had contracted polio. I had no exposure that we were aware of. Wonder how many of you had had your vaccines. I contracted Polio in the summer of 1957. Annie Edited by AnnieA920 (07/09/09 12:49 PM)
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#156644 - 07/09/09 02:24 PM Re: Post Polio [Re: Terri Lee]
YosemiteSam YosemiteSam Member Registered: 05/20/00 Posts: 5386 Loc: No. Calif. (SF Bay Area)	Originally Posted By: Terri Lee Bob, didn't hear back... are you in or around Grass Valley? Terri, I don't know if you still read this board. I sent you a PM shortly after you posed this question. If you aren't familiar with how the board works, left click on "My Stuff" at the top of the page, then click on "My Messages". _________________________ Bob
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#156645 - 07/09/09 02:24 PM Re: Post Polio [Re: AnnieA920]
MerryA MerryA Member Registered: 01/10/04 Posts: 10887 Loc: Tennessee	Annie - I had the vaccine and still caught polio. But I feel sure the shot didn't give it to me, the shot just didn't protect me. The gestation period for the virus is only 10-14 days so if you didn't get sick within that time period of having the vaccine, you are probably like me and just weren't protected. I had heard there was a some bad vaccine given in Nebraska too. I feel sure my brother and middle sister has non-paralytic polio the same time I had the bulbar. We were all sick and the doctor said we all has a "bug" - I was paralyzed from the neck down too but was misdiagnosed so no hospital or iron lung. A miracle I didn't die. Welcome to all the "new" PPS folks. Merry - Polio 1962, PPS mid-1980's _________________________ "I was curious. Since I'm not a cat, that's not dangerous." - Greg House 76.22.172.94
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#156657 - 07/09/09 10:54 PM Re: Post Polio [Re: MerryA]
AnnieA920 AnnieA920 Junior Member Registered: 07/09/09 Posts: 3	I believe for the simple fact that no one we knew including anyone in my family or the families in the area had contracted polio, that points to contraction of the disease through tainted vaccines.I have had doctors admit that most likely it was the case in my case. There is such a thing as the virus lying dormant as well. I don't know how long after the vaccine that I fell ill. I had a very bad case and was not expected to live. I have always had a good immune system, was not a sickly child before polio, one of my brothers was more prone to colds and other childhood illnesses but he never became ill. There were 200,000 children who were given vaccines that caused the illness this is documented. I have never asked my parents the time frame of the booster in relation to onset. It well could have been within two weeks. There is much that the general public is not aware of concerning diseases contracted from various vaccines as well as autism being triggered by mercury based vaccines. Am not particularly trusting of medical establishment anyway.
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#156659 - 07/09/09 11:10 PM Re: Post Polio [Re: AnnieA920]
AnnieA920 AnnieA920 Junior Member Registered: 07/09/09 Posts: 3	I contracted polio in the summer before I turned 4 years old in September. I was in the hospital for 3 months and according to my parents report was in danger of dying. I walked with long leg braces and with crutches until this day 52 years later. I was diagnosed with PPS at age 38 when I began to have extreme fatigue. From 1992 when I retired from my job in Social Work until 1999, I had to rest for a day before making a 2 hour trip to and 2 hour trip back from a nearby city for necessary appointments. I had no stamina and seemed to get weaker and weaker. In 1999 and 2000 around Easter of both years I started have rigors every hour 24 hours per day. I called the specialist, they said I had to come in. I couldn't sit up much less get to the doctor, was afraid of catching something in a hospital as staph infection is commonly caught while in hospitals. I took Ibuprofen and suffered night and day every hour for about 2 weeks, then it began to get slowly better. I got back to my pre-rigor stage in about 3 months of bed rest. The second year I went through exactly the same. My brother suggested an air cleaner because he knew I sometimes had allergies. I bought the air cleaner for that, I got better and I began to get my stamina back, until in 2004 I was able to work again in my own business at home. I don't have to rest for a day to make trips, I don't have many of the symptoms that I had before. After discussion of some facts with a doctor and other experts I came the conclusion that I had an allergic reaction to mold. The air cleaner killed mold and it would not grow. I had previously gotten Clorox and cleaned it from the walls as it would grow on the lower north wall of my bedroom. I do still use a manual chair but still walk as well. The only thing I deal with now is sciatica due primarily to effects of one side of my body not being balanced with the other. All that said to say that in most every way, I am better now than I was 10 years ago. I don't take tons of medicine, take Vitalive vitamins, and am excited to see what is next. Maybe what I have written may encourage someone else. Annie
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#172546 - 11/17/09 08:00 PM Re: Post Polio [Re: AnnieA920]
archer archer Junior Member Registered: 11/17/09 Posts: 2	Looks like it's been a long time since anyone has posted here. I'm new, just found the forums. Learned about NM from Dr. Bruno, but can't remember how I found him! Caught polio in '53 at age 4. I was lucky, and after surgery to fuse ankle bones at age 14 I was able to do away with crutches and leg braces and go with a cane. PPS showed up at around age 50 after breaking a leg while on a business trip. Before that, I had an active career and traveled the world. Now I stay close to home. Still using a cane, but I have to have two of them if much walking is involved. I work part-time from home on the computer and phone, and draw SS disability. I can see a power chair in the near future. I like to get outdoors and walk my property, so I'm thinking of one of the 4WD models. My wife is also a polio survivor. She "shows" better than I do, less obvious disability, but her peripheral neuropathy keeps her in pain a lot. She survived lung cancer, 5 years since her right lung was removed. The trauma of surgery aggravated her symptoms considerably. Anyone have any recommendations on a rough-ground power chair?
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#172612 - 11/18/09 01:31 PM Re: Post Polio [Re: archer]
paradocs paradocs Member Registered: 11/20/04 Posts: 2323	Welcome. I'm still using a manual chair so I can't comment on power chairs. There is a site called wheelchairjunkie http://www.wheelchairjunkie.com Try posting your question there. When you find a chair that works well for you, please report back here. Edited by paradocs (11/18/09 01:32 PM)
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#172708 - 11/18/09 07:18 PM Re: Post Polio [Re: paradocs]
archer archer Junior Member Registered: 11/17/09 Posts: 2	Thanks, paradocs. Like that handle! I'll check out the junkie site.
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#174742 - 12/10/09 02:49 PM Re: Post Polio [Re: archer]
Sug Sug Junior Member Registered: 12/10/09 Posts: 1	I, and my neighbor got polio in 1948. She went to the hospital for 2 weeks due to a high, uncontrolled temp. I stayed home with therapy, etc. I had to wear special shoes for a few years, she seemed to have no problems afterward, and I don't remember her having therapy at home as I did. I began using a scooter in 1996, being diagnosed with Chronic Fatigue Synrome, the next year Fibromyalgia, and a few years later with PPS. Three years ago the doctor recommened a power chair as it is easier on the arms. I have the Permabuilt also so I can change my position, etc. My back was broken also in an accient - before I knew I still had problems. I could dance - had problems running. I can walk inside still but it gets harder - and harder an I only walk to fix a meal or get to the bathroom. Guess I should stop that. Last I heard my neighbor was working as a hairdresser still, but that was about 9 years back. I got the seat that raises up also, and an Braun Entervan so I can stay as independant as long as possible. I love gardening but have a gardener to dig the big holes, and I use the old scooter outside. Guess we can all suggest things to help each other here, huh? Nice to be with people who really know how it is.
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#174853 - 12/10/09 09:22 PM Re: Post Polio [Re: Sug]
nadajoe nadajoe Member Registered: 08/21/01 Posts: 3765 Loc: Middle of the USA	I got it in 1953 at age 3. So U do the math. Always in chair and powerchairs since 1969-70. I remember having hot, wet, wool blankets wrapped around me... torture. I can't stand that smell still,,, makes me wanta kill..lol. I did get an early spine fusion at about 10-12.... failed. I was used for training new surgeons.....rat basturds!,,, at KU med center... till I got to be of age. Then I said enough to that and was on the wild side since,,,, doing whatever, whenever. Still on the wild boy lifestyle but slowing with age... damn! ,,,joe..
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#174923 - 12/11/09 01:26 PM Re: Post Polio [Re: nadajoe]
paradocs paradocs Member Registered: 11/20/04 Posts: 2323	I remember those awful hot, wet, wool packs, too. I was in a hospital in South Texas without air conditioning. In the summer it WAS TORTURE!
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#175052 - 12/13/09 02:08 AM Re: Post Polio [Re: paradocs]
Greggg Greggg Junior Member Registered: 12/12/09 Posts: 3 Loc: Somewhere in Texas	I'm a visitor here so I hope you don't mind if I weigh in although I'm losing the use of my legs thanks to neurological difficulties. My girlfriend (girl?) got it around 1959 at age 3. She was on braces and crutches through high school and is in a motorized chair now. I can't count the number of surgeries but there were a lot. She scared the heck out of me by showing me the picture of the iron lung she was in for 1 day! Paradocs...I'm from S.Texas and know what you mean about the summers. At least the hospitals have air conditioning now.
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#186797 - 05/12/10 04:02 PM Re: Post Polio [Re: archer]
bluejay bluejay Junior Member Registered: 05/12/10 Posts: 2	I got polio in 1976, when I was 11months old when I lived in India. I am 34 now, I haven't got PPS yet. I wear long leg braces on both legs, use crutches. I am on energy conservation mode now, ever since I was advised by a doctor @ National Rehab, Washington DC. I use mobility scooter when I need to walk more than 100 ft. MD Dept of Vocational Rehab helped me pay (partly) for a scooter lift that was fixed in my car.
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#186798 - 05/12/10 05:05 PM Re: Post Polio [Re: bluejay]
MerryA MerryA Member Registered: 01/10/04 Posts: 10887 Loc: Tennessee	Hey bluejay. I am Merry and I caught polio in 1962. Started feeling PPS in the early 80's. Some people don't experience PPS - you may be one of the lucky ones. _________________________ "I was curious. Since I'm not a cat, that's not dangerous." - Greg House 76.22.172.94
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#192405 - 09/08/10 04:15 PM Re: Post Polio [Re: MerryA]
YosemiteSam YosemiteSam Member Registered: 05/20/00 Posts: 5386 Loc: No. Calif. (SF Bay Area)	Bumping this for a new member. ßoß _________________________ Bob
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#192548 - 09/12/10 05:46 PM Re: Post Polio [Re: spinner]
Stormi Stormi Member Registered: 08/17/00 Posts: 500 Loc: USA	I don't have Polio but I have CP and it's exactly the direction my health has taken.. braces crutches ... major fatigue... manual wheelchair then power wheelchair at 35.. (multiple surgeries before the age of 16.. Do any of you have pain? I have Chronic pain and the fatigue has gotten worse as I have gotten older despite the fact that I haven't walked since I was 19 ..I don't have to do anything to be tired and if I went out with friends all day and then went out at night I'd pay for it for days. I could barley walking at 14 but kept going and getting weaker even with therapy ... until I just couldn't do it anymore... I'm thinking a type of CP syndrome (I have noticed that the friends who never walked or only walked a tiny bit aren't in pain and are fine. Only the ones that walked like me with multiple surgeries have gone down hill like me even with the best of medical care... _________________________ "Only those who dream the absurd, can ever do the impossible" -Hellen Keller
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#192559 - 09/13/10 07:36 AM Re: Post Polio [Re: Stormi]
Winterwhite Winterwhite Member Registered: 06/01/09 Posts: 34	Hi Stormi, The progression of decline sounds very much the same. You expend a lot of energy, over use the muscle power you have left and ultimately depleted whatever reserves you have left. I remember when I was a patient and when I worked at a rehab facility that many of the polio patients and SCI patients ultimately gave up their efforts to walk because it wasn't as functional as sitting in a chair and it took everything of of them. I don't know what type of CP you have but I remember the uncontrolled effort took a lot out of them. At this stage of my life I pace myself daily and never do more than I have too. That has become my reality. I am so thankful that I did the many things I did before I was 45. Today it would be an impossibility. Good luck and stay positive. Mary
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#193490 - 10/02/10 07:37 AM Re: Post Polio [Re: Winterwhite]
TobySav TobySav Junior Member Registered: 08/04/10 Posts: 1	Hi all my fellow post-polio friends. I got polio in 1929 at the age of 2 and a half. Went through it all - casts from head to toe, brace on my face, braces and crutches. Got through it okay or so I thought. Started going really downhill so slowly, that I didn't even realize it. Now, at 83 I am totally confined to a wheelchair. It's as though I don't know what is happening to me and it depresses me so much. I would like to find a friend or friends with whom I can correspond with, so that I don't feel so alone. Toby
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#193502 - 10/02/10 03:07 PM Re: Post Polio [Re: TobySav]
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Hi Toby, you are not alone let me assure you, there are a few of us floating around here now and again. If you want you can e-mail me at dmkid@att.net anytime, can't fix much of what you write about but sure can relate, and can listen. take care, Donna
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#193515 - 10/02/10 06:29 PM Re: Post Polio [Re: ladyheart]
soda soda Member Registered: 08/26/07 Posts: 4726	welcome toby! we have a few pps ppl pq _________________________ 67.87.81.12
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#193578 - 10/04/10 10:27 AM Re: Post Polio [Re: YosemiteSam]
john55555 john55555 Member Registered: 03/31/06 Posts: 531 Loc: "'cross the alley from the Ala...	Thanks, Bob! I'm Johnny and have been visiting off and on for a few years. Not so much lately. If anyone needs to discuss PPS, I'm your man! Just let me know. Are you aware of the new that came out of the 2nd Mexico International PPS Convention? This couls be huge..let my look for it! Check this out while I look for the rest: 1. The study proved gamma helps PPS. 2. The study shows we have fragments of polio protein in our spinal cords, which causes our immune systems to continue to battle the polio virus that was there. This and not dying neurons is what is causing PPS by weakening our immune systems. Our body is still in the fight mode to kill off the tiny polio fragments in our bodies. This does not mean we still have polio, just remnants of the old virus our immune systems are still attacking, causing further degeneration. 3. And even more importantly, they have found a blood test to tell if you have PPS! Dr. Brian Joseph The details will all be released as soon as the peer review process is complete. Hi, Alma and Shari..We (the polio community as a whole) need to get the word out on this once it's confirmed. If it is indeed a fact a blood test can confirm we have PPS, this is amazing and important! It would eliminate the need for us needing our first wheelchair from SSD, to go to some questionable "doc in the box" rehab center run by people with questionable credentials..an experience I have gone through. This "clown" told me to walk as best I could without crutches, using just my aging leg brace. "Wall walking" is one of the worst thing a PPS'er can do! It invites a fall. Because I Could "wall walk" for a few feet, this idiot concluded I be denied a power chair, as I had enough "Upper body strength" to get around the house and ok'd a manual "scooter!" Scooter? the application clearly stated power Chair! If a blood test can be taken as proof that we have PPS, that's a major breakthrough that every PPS organization should start pushing!
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#193583 - 10/04/10 12:33 PM Re: Post Polio [Re: TobySav]
Winterwhite Winterwhite Member Registered: 06/01/09 Posts: 34	Hi Toby, I'm new to NM so we're both starting at the same place. I contracted polio in 59 at the age of 17. It was the tail end of the epidemic. I have been confined to a wheelchair all of my adult life but I know the feeling as you loose more and more of your function. Don't get depressed. Find some friends here and enjoy the stories. Feel free to say hello. Mary
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#193587 - 10/04/10 12:58 PM Re: Post Polio [Re: TobySav]
paradocs paradocs Member Registered: 11/20/04 Posts: 2323	You're not alone. There are still a bunch of us tough survivors around -- although, like you, we may not be able to do as much as much as we once could. With experiences like you have been through I'm sure you can give aid and comfort to those who are just beginning to face some of the problems we went through even if they are not polio related.
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#194637 - 10/24/10 10:38 AM Re: Post Polio [Re: paradocs]
moonshadow moonshadow Junior Member Registered: 10/23/10 Posts: 2	When I had polio is not entirely clear, but by the symptoms I developed in the aftermath, doctors determined that I most likely had it as an infant or toddler (1953). I fell all the time, walked on my toes, had pain in my legs, and could never perform athletically at school. I thought that all kids fell all the time and that your legs grew stronger as you became an adult, so I never told my mother. The school called her when I was in first grade to tell her. That started years of therapy, surgeries, braces, casts, wheelchairs, crutches, etc. At 16, I was finally discharged from outpatient therapy and was told I had made as much progress as I was going to. I was 16 then. They surmised I had polio, but it was missed by my mother. (Like she missed the falls, too?-My mother is a tad negligent in the maternal instincts). When I was in my early 30s, we moved to NH and I started taking my kids hiking. I began noticing an increase in weakness in my legs. After only ten minutes on a trail, I would have to manually lift my leg up over anything higher than five inches or so. By the time I reached the top the last time I hiked, I was crawling on my hands and knees. I loved hiking. An astute pcp told me I had post polio syndrome in 1990, but he never did an EMG. While it isn't definitive for post polio and is only used to confirm loss of nerve conduction, I finally did have one done in 2002, an EMG was done, and the neurologist said it looked like an "old polio". I am now on disability and in an electric wheelchair for anything longer than 100 feet or so. I still fall frequently and in fact just tore the cartilage in my knee in a bad fall that resulted in a concussion. I may need surgical intervention for that knee. I lost my 20 year career as a RN due to post polio, I lost my beloved hikes, I can't dance anymore, my husband left me last year for someone else, I lost my home as a result of him divorcing me. I now live alone in a one room cabin in the mountains in Vermont; it is all I can afford. I live on a small stipend from social security and alimony. My children have pulled away from me, too, as they can't deal with my disability. They don't like me to talk about it. That hurts the most. Actually, what hurts the most physically though, is the constant pain and numbness in my hands and lower arms and feet and lower legs, but especially the legs and feet. It hurts everywhere else too, but not as intensely. I have what is called central pain syndrome as well. Does anyone else have that? It is horrific pain, it is incompatible with life and it has robbed me of my life. What's more, I can't afford a wheelchair van, so I am entirely housebound except for MD appointments, for which I use my cane. I have to be in a wheelchair and can't use it! I am on both morphine and oxycodone for the pain, but it is largely ineffective for this type of pain, and only masks about half of it. I live in torment at times, especially when I build up a tolerance to the medications to which I am, after three years now, addicted. Then we have to mess around with dosages again. (If it weren't for my faith, I would just give up) When I am being tortured by the central pain, at times I scream it is so bad. Thank God I am out in the middle of nowhere and no one can hear me. I have to suffer alone and there is no one to talk to about it. I am making new friends here in VT, but I don't want to scare them away with my horror stories of central pain. I only see them in church since I am housebound and my cabin is so small that people feel uncomfortable being in it! My life has been robbed by post polio, pain, and the cost of living in America (i.e., can't afford van). I lost everything due to this disability. I am trying to stay afloat and keep above it all, and while I am learning how to be disabled, I must also learn how to deal with it alone, and to live alone without any help at all. So, that is my story. Edited by moonshadow (10/24/10 10:49 AM)
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#194677 - 10/25/10 01:02 PM Re: Post Polio [Re: moonshadow]
paradocs paradocs Member Registered: 11/20/04 Posts: 2323	I'm not a diagnostician, and even if I were, I would be foolish to try to diagnose anything from a post. However, I do have some ideas you might want to consider. Was MS/MD ruled out in your case? They can also cause the weaknesses you began to experience in your childhood. I believe one of them is more prevalent the farther north one goes. As for being an RN, I have known a couple of post-polio RN's who, in spite of being confined to wheelchairs, were able to work in administrative positions in hospitals and nursing homes. (I also know a C-5 sci who is a licensed, working OT). If you could find such a job, it would give you a greater "sense of worth" and also probably enable you to get a van. I have known only one post-polio with the pain problems you describe. Her doctors diagnosed her pain as fibromyalgia and got her to a specialized pain clinic which improved her quality of life greatly. Have you been evaluated by such a facility?If not, it certainly could not do any harm. Also check out the fibromyalgia treatments on Google. Maybe some of these ideas will help. I hope so. Good luck. Edited by paradocs (10/25/10 01:04 PM)
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#194731 - 10/26/10 07:52 PM Re: Post Polio [Re: paradocs]
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Hi moonshadow, another PPS'er here and share the PPS pain issues, as well as the muscle weakness and fatigue. I would agree with paradocs about checking into whether there could be any other reasons for your central pain that might be "treatable". I went to a PPS neurologist a couple of years ago, who ran a series of tests to determine if my pain issues were from another cause, in other words, not to assume it was only PPS as it's cause. In my case, it turned out to be just PPS and not much could be done other than medications which as you say prove to be less and less effective over time, and major life style changes to limit or greatly reduce activities which contribute to increased pain. I posted on your other thread a piece I wrote on pain a few years ago as well. please take care, Donna
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#194928 - 10/31/10 08:21 PM Re: Post Polio [Re: ladyheart]
Oregonrose Oregonrose Junior Member Registered: 10/31/10 Posts: 1 Loc: Oregon	Moonshadow,This is my first post. I had polio in 1942 and after about 6 months began walking again.I lived in a small Texas town and did not have access to any rehab type facility so had no aftercare. I had most of my residual in my left lower extremity with a lot of muscle loss and later developed a sort of "club foot". I was 7 y/o when I contracted polio and at age 14 had surgery on my left foot and achilles tendon. I was never in a brace but walked with a very decided limp. As with most post polios I was determined to not be kept down.Went on to become an RN which was probably my downfall as far as developing PPS - too much stress on weak muscles. Worked 40 years in all.Was diagnosed PPS in 1989 and by that time was using a cane as I fell often.I then was working in a doctor's office as an advice nurse so could sit most of the time.I retired in 1999 and by that time I was using crutches as muscles became weaker. Now at 74 am using a walker but should probably be using a powerchair as I have developed severe shoulder arthritis from all the overuse and overweight.I can certainly empathize with the pain problem. Have been searching for ways to cope with mine. As ladyheart says we have to make lifestyle changes and give ourselves the OK to regulate our activities and accept help when needed. This has been my biggest problem as I feel I am having to give up so much of my independence. Hang in there, Rose
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#194929 - 11/01/10 06:59 AM Re: Post Polio [Re: Oregonrose]
Foghorn_Leghorn Foghorn_Leghorn Member Registered: 09/19/10 Posts: 102	Welcome to New Mobility Rose, I am a para its good to hear from another Oregonian.
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#194931 - 11/01/10 09:43 AM Re: Post Polio [Re: Foghorn_Leghorn]
ladyheart ladyheart Member Registered: 02/24/00 Posts: 3392 Loc: on a pathway, somewhat smooth,...	Welcome Rose, there are a few fellow PPS'ers around here as you've seen so far. Sharing stories and tips on adaptive adjustments can be very helpul. You might also check out powerquad.net as well, it's where many of the folks here hang out too. take care, Donna
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#196534 - 12/23/10 09:01 PM Re: Post Polio [Re: Sandee3535]
dnmetz dnmetz Junior Member Registered: 12/23/10 Posts: 1	Sandee, I also got paralytic polio from the vaccine. I had two doses of the sugar cubes. The third sugar cube I was given right before I started school was the one that gave it to me. Nothing from the first two doses. That was in August of 1959. Did you get it from the vaccine? I have hear of a couple that have.
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#196543 - 12/24/10 02:30 PM Re: Post Polio [Re: dnmetz]
paradocs paradocs Member Registered: 11/20/04 Posts: 2323	I understand that the Sabin (sugar cube) vaccine was finally withdrawn because the virus was live, but supposedly too weak to cause the disease -- like the claims made for the nasal mist flu vaccine. Unfortunately that did not turn out to be the case for some people. If the Salk (injected dead virus) has caused polio I haven't heard of it.
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#198703 - 05/03/11 02:38 PM Re: Post Polio [Re: john55555]
Donna J Donna J Junior Member Registered: 05/03/11 Posts: 1	I got polio in 52 (2 years old), paralyzed on whole right side. Sister Kenny worked on me with no residual paralysis. Used braces and crutches. Both feet operated on to stabilize, turned outward. Hip dislocated at 9, did a chop job. First manual chair at 7. Last year had to go to a power chair. Effects of PPS 26 years ago. I can relate, Johnny, from a Mustang to a Jazzy. Still kickin though and not giving up even though some have wanted me "in the system" to "take care" of me. They wanted to put me into a retirement home but I am still functional. Ha ha seems like that is a PPS trait - I'll Show THEM!
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#201950 - 04/05/12 02:46 PM Re: Post Polio [Re: john55555]
MeersKat MeersKat Junior Member Registered: 06/27/07 Posts: 2	Hi Johnny, I also got polio in 1949. I was 8 months old. Most of my life I used braces and crutches, and just like you, I've had to start utilizing an electric wheelchair in the late 90's. My arms have become so worn out from moving and lifting my legs that somedays I have difficulties lifting a cup of hot coffee to my lips. However, I'm in a good spiritual mindset. I had a tough time in the beginning adjusting to further disabilities, but I'm doing okay now. Depression, fatigue, lack of an adequate income and menopause kicked my butt for a few years, but I am much better off presently. And I hope you are OKAY as well. Kathy
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#201951 - 04/05/12 02:47 PM Re: Post Polio [Re: john55555]
MeersKat MeersKat Junior Member Registered: 06/27/07 Posts: 2	Hi Johnny, I also got polio in 1949. I was 8 months old. Most of my life I used braces and crutches, and just like you, I've had to start utilizing an electric wheelchair in the late 90's. My arms have become so worn out from moving and lifting my legs that somedays I have difficulties lifting a cup of hot coffee to my lips. However, I'm in a good spiritual mindset. I had a tough time in the beginning adjusting to further disabilities, but I'm doing okay now. Depression, fatigue, lack of an adequate income and menopause kicked my butt for a few years, but I am much better off presently. And I hope you are OKAY as well. Kathy
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#201963 - 04/07/12 04:43 PM Re: Post Polio [Re: YosemiteSam]
cbal-craig cbal-craig Member Registered: 04/06/00 Posts: 17675	Originally Posted By: YosemiteSam Bumping this for a new member. ßoß Funny when Ronda is around we have a flood of new members but what can I do? Trolls can be anywhere I'm hoping to get some new members but I suspect most of these people are Ronda or her friends. Get a clue avory seek help Edited by cbal-craig (04/07/12 04:46 PM)
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