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Old 02-02-2008, 06:33 PM   #31
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Janet W. HB User
Re: Polio not Post Polio - VAPP

My Goodness, see there are alot of Polio people with 2 different sizes in feet- I did not have that problem, although I think one foot is about 1/2 smaller than the other... My left leg also was affected.

I wear 2 braces, recently had to get one for my good leg- they are AFO's - they make them so lightweight this day and age- not the metal and leather ones they did years ago. although some still want to wear those when they are told they need braces... Mine is out of carbon and lightweight plastic with velcro. It helps because not only helps me walk but also my feet do not drag like they were.

best to you and Dana- she is still a baby- raising babies.

Hugs Janet PS- I am going into my next phase and getting a power chair- my shoulders, neck and arms have also taken the brunt - so I want to save what I can for as long as I can.

 
Old 02-03-2008, 03:27 AM   #32
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tazkc1 HB User
Re: Polio not Post Polio - VAPP

wow janet,how old are you,if i'm not being rude to ask?...i'll be 51 in march...i had a drop foot in my left,and is the reason i had the triple arthrodesis surgery,and which has been most of my problems,the stiffness i now get,the pain,and with the bone growths..and any surgeries i've always had was on that foot..my left leg is skinnier than my right,and i have no muscle strength,the main muscle was damaged with the polio,so it just basically is there to help with the right in walking...so far,i've not had any problems with my right leg in that it bears most of what my left cant do...i've read that some think exercise could be good,and some say that it would be more harmful,which i tend to think exercise would not help for me as when i over-use that leg or try to use that leg to do something,i get muscle spasms and twitches...i get sharp shooting pains that go thru my left foot and will cause my foot to jerk..when i get home from work being on my feet all day,it can be unbearable..when i sit for just a few minutes and get up,i have to have my cane,the pain in my foot makes it hard to walk,till i can get several steps taken,then it will lessen some,till the next time i get back up again...i'm guessing this is the joint paint i'm having,but didnt know this till i started reading all this about PPS...my house is so small that it wouldnt allow for me to use a wheelchair,if i ever got to that point...my left foot has no give,and cant bend nor move that foot,from that triple arthrodesis,it is completely stabilized,which makes it suscepitble to bone growths,which are kinda similar to bone spurs,only i get them in places where people dont get bone spurs...so the reason for these orthotic shoe inserts is to relieve the pressure on the way i walk on that foot,but when they do that,it affects my leg and my hip too...what takes a couple months to do,takes that much to un-do then...so i'm not having much luck with orthotics...so i'm wondering if a brace would do me better...i also read there's a paralytic polio,and a non-paralytic polio,and i assumed i had the non-paralytic as my leg was not paralyzed,but in reading my old medical records,i have the paralytic polio...

 
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Old 02-03-2008, 12:10 PM   #33
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Janet W. HB User
Re: Polio not Post Polio - VAPP

Hello there, I ajust turned 52.... I would definitely be careful of exercise- I have stretches I can do for my legs, back and shoulders... It is wild, but when I used to walk alot, my good leg would always go stiff and for sure after the spasms would start- this started in my 30's.... I would just blow it off. I had polio if my left leg- more weakness than anything so I had just a mild case of paralytic polio when I was 4- my leg remained weak for years, matter of fact, I do not think I ever regained strength back like a normal person... But I just wore special shoes that were built up for my length difference.

I think you Really should be wearing a brace- maybe you could just contact Dr. Bruno and ask him- he will listen and is so great about getting back.... You don't have to just be a patient of his... He wants to hear from all of us... He could steer you in the right direction and maybe through the right contacts get you some help....

I strongly recommend not to keep pushing yourself, because once you burn out more neurons you never get them back... I have Muscle Atrophy of my left quad- never knew I had that- and once that happens those muscles are gone... So please take care and get your brace- and make sure you go to the right doctors and ones that know about Polio/PPS....

Hugs Janet (Please let me know) I am now retired- not by choice but by PPS..

 
Old 02-04-2008, 03:00 AM   #34
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tazkc1 HB User
Re: Polio not Post Polio - VAPP

hi janet...wow you're not much older than me..that has pretty much been the extent of my left leg,the weakness,and i never had any strength in that leg..is your leg skinnier than the other leg too?...so when you say you got muscle atrophy of the quad,what part of the leg is that in,cuz i've read that happening too?...i get a feeling of tiredness in the very upper part of my leg,and lately that feeling has not gone away...its the top part of my leg,not the backside of it...so how would i contact this Dr. Bruno in email?...how does this brace help?..other than my leg just being weak,its been my foot thats always been my trouble and for the surgeries...but i know times i've had to run,like after my dog,my leg will get spasms and gets really weak,so i agree,i dont think exercise would help..and too i figure i get enough exercise at work,and am probably over-using and is why i'm feeling it more now...you had mentioned it getting to you now in your arms and shoulders,how does that happen?...in my medical records,there was a mention of slight osteoporosis at age 11,sure makes me wonder how much i have now..the doctor who did my foot surgery 11 years ago mentioned getting a bone density test done,but i never did go back for that,but would like to get one now though...that leg is literally "wasting away",as i dont use it,other than to help walk............<<<<<<<<<<removed>>>...t hank you so much janet for just being here ya know...cheryl

Last edited by moderator2; 02-04-2008 at 06:15 AM. Reason: please do not ask members to post against the rules

 
Old 02-04-2008, 06:33 AM   #35
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danal84 HB User
Re: Polio not Post Polio - VAPP

Cheryl, I'm not sure what to tell you about my brace, it is attach to my shoe and goes up almost to my hip, there is a lock at the knee so I have support to walk but I can unlock it to sit down. My right leg is very skinny to, I can walk without my brace but I have to hold my leg and my knee bends back so I limp real bad. I can't take care of my kids that way so I wear the brace allmost all the time now. My kids are 1 and 3, sometimes its hard for me but I love them and I want to be the best mom and I am very lucky my husband is so wonderful he helps me so much.
Dana

 
Old 02-04-2008, 02:14 PM   #36
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tazkc1 HB User
Re: Polio not Post Polio - VAPP

hi dana...i dont know what kinda brace this doctor was talking about,as i wanted no part of it,so didnt ask...how did it happen that you got polio when you almost never hear of people getting it anymore?...you're so young is why i ask...i may have always been in denial of my polio,but i alwaysss knew that there were others who got it worse than me,and i could really feel for them...and i'd about bet you're the best mom to those kids,healthy or not...just hang in there...there was a lot as a kid that i could not do so i know it isnt easy...when i do see a doctor,i am going to ask about a brace the next time...cheryl

 
Old 02-05-2008, 05:59 AM   #37
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danal84 HB User
Re: Polio not Post Polio - VAPP

Cheryl, I hope youre doctor can get you a brace that help you walk better with less pain. I understand how you want no part of it when youre younger, I was like that to, I thought the brace make me look like a freek and people stare at me. I know its very rare my age to have polio but thats what happen to me, my mom had alot of problems, she was 16 when I was born and running away from her parents and her boyfriend, she just never took me to the doctor and get the vacine. I was raised by my grandma and grandpa because my mom was'nt there for me most of the time and I never knew my dad at all. When I was about 10 my mom start to get her life back, she got clean and finish high school then her college degree. She got a good job and a promotion if she move to Atlanta from CA. I went with her, I was 16 it was a chance to start over in a new school. My grandma allways made me wear my brace but my mom said I did'nt have to. I did'nt wear it for over a year, my knee and hip hurt all the time but somehow I thought it look better. I met Kevin in school, he is sooooooooo amazing. He ask me about my leg, why I limp and have to hold my leg, it was hard for me to talk about it but finally I explain it to him and he said there must be something that can help me walk better and I told him I have a brace, he said well if it help you walk better you should wear it. I was so scared what he would think but he said it make me walk better and look better. I start having alot of problems with my mom, she was upset about me and Kevin she said I was making the same mistakes she made, I said can't you see we are in love. It got to where I did'nt even want to go home and listen to her go on about it. I wished I was back in CA with my grandma and grandpa but I wanted to stay so I could be with Kevin. I did'nt realize my mom was using again, then 10 weeks before I was suppose to graduate high school my mom took her life. I came home and found her in the bedroom, it was the most horrible thing ever, I was a mess for over a year, could'nt sleep, every time I close my eyes I saw it over and over again, I had alot of therapy and some time in the hospital and Kevin stayed by me through everything. I told him he deserved better than this he should go find somone else but he said no Dana I love you and we will get through this together. His parents to, they were so wonderful they treat me like their own daughter, I call them Mom and Dad because thats what they are to me. So now Kevin and I are married and we have two beautiful children, and I am determined to be the best mom ever.
Dana

 
Old 02-08-2008, 02:01 AM   #38
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tazkc1 HB User
Re: Polio not Post Polio - VAPP

wow dana,sounds like you've got an amazing husband there,and they're hard to come by...if you have someone like that,it helps you get thru anything then...

 
Old 02-08-2008, 06:26 AM   #39
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danal84 HB User
Re: Polio not Post Polio - VAPP

Kevin is amazing and his family to, they are wonderful awsome people. Kevin is sooooooo smart, Amanda was born and we got married while he was in college and working part time, still he graduate with honors from GA Tech in 3 1/2 years and he is a computer engineer. I am so proud of him.
Dana

 
Old 02-08-2008, 06:58 PM   #40
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Janet W. HB User
Re: Polio not Post Polio - VAPP

Dana- I am so happy for you, dear. Everyone surely deserves happiness in their lives... I am glad you two met- he surely sounds like a "Keeper". HA!

Janet

 
Old 02-12-2008, 02:11 PM   #41
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danal84 HB User
Re: Polio not Post Polio - VAPP

Janet, so sweet of you to say that. Yes I am sooooooooooooo thankful Kevin and I met, now I understand I had to go though all the bad things in my life, with the polio and my mom and everything, just so we could be together. I use to feel very sorry for myself, and sometimes I still do like when I'm not able to do something with my kids, then I relize how lucky I am to have such a wonderful husband and wonderful children.
Dana

 
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