#85833 - 08/01/07 04:37 PM
Re: Post Polio
[Re: YosemiteSam]
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sodapop
Member
Registered: 02/18/05
Posts: 9486
Loc: new york
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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]
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Paul I
Member
Registered: 02/24/00
Posts: 7913
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Paradocs, Univerity of Illinois. I do have a PP classmate who lives in College Station. Guess it's not that close to Houston. PI
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"...only the shadow knows"
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#85917 - 08/02/07 03:12 PM
Re: Post Polio
[Re: sodapop]
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Lola
Member
Registered: 03/17/05
Posts: 5944
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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]
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flicka
Member
Registered: 04/06/00
Posts: 24616
Loc: SLO County, CA - 66.122.77.142
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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!
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"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]
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Ben T
Member
Registered: 07/30/07
Posts: 82
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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]
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cowboymom
Junior Member
Registered: 09/12/07
Posts: 2
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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]
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soda
Member
Registered: 08/26/07
Posts: 4726
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wow, i nominate cowboymom for the LeoTolstoyAward of WebPosting.
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 67.87.81.12
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#90062 - 09/13/07 10:41 AM
Re: Post Polio
[Re: cowboymom]
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ladyheart
Member
Registered: 02/24/00
Posts: 3392
Loc: on a pathway, somewhat smooth,...
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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]
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cowboymom
Junior Member
Registered: 09/12/07
Posts: 2
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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]
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flicka
Member
Registered: 04/06/00
Posts: 24616
Loc: SLO County, CA - 66.122.77.142
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Don't worry, I will take my ugly, functional brace and trot on out of here.
Why? Have we offended you?
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"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]
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soda
Member
Registered: 08/26/07
Posts: 4726
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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.
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67.87.81.12
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#90080 - 09/13/07 03:57 PM
Re: Post Polio
[Re: john55555]
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ParaDude
Member
Registered: 03/22/00
Posts: 33855
Loc: United Provinces of America
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Dang...Rob went and chased off another one...
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]
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ladyheart
Member
Registered: 02/24/00
Posts: 3392
Loc: on a pathway, somewhat smooth,...
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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]
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Nonniebee
Junior Member
Registered: 11/08/07
Posts: 3
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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]
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joyt
Member
Registered: 04/16/01
Posts: 19345
Loc: AccessibleProperties.net
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welcome, nonniebee! i'm a quad due to sci -
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