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Cerebral Palsy Message Board

Lost the ability to walk. Not getting any better...


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Old 07-13-2017, 12:37 PM   #1
lnaj447
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Lost the ability to walk. Not getting any better...

I'm gonna start by explaining when exactly I lost the ability to walk.

I started walking when I was two, and I had to wear braces to do that much. I suffer from left hemiplegia CP, so my right leg and arm are effected. I've always thought that my case was mild. I was also born with both of my feet being clubbed, but they did manage to correct the left one. The right one, not so much. It kept turning back inward despite multiple attempts made to correct it, which I guess is because of the CP.

What happened, is that I would always either walk on my toes, or on the side of my foot. (practically on my pinkie toe.)When I was about 9 years old, it started hurting to walk on that foot. My family doctor suggested using a wheelchair for long distances.

My parents weren't satisfied with this alone, and went on a massive search to find a solution to stop the pain. It eventually landed us seeing this doctor who specialized in fixators when I was 11. He proposed that I go through limb lengthening surgery, and we decided to try it.

I went through with the surgery, and wore the fixator for I think 3-6 months. I was told to go through therapy to regain muscle tone, which I did do...but I only improved to a certain degree. I still had a terrible limp and could only walk shorter distances than before, which was kind of worse than where I'd started.

I stayed in a wheelchair most of the time after that, because it still hurt to walk and my balance was absolutely awful. (And even worse, my leg wouldn't straighten out all the way anymore. )

So fast forward to last year, when I was 24. We decided to get a second opinion from a different doctor, because my toe had turned in so much that it was practically sitting underneath the toe next to it. It was difficult to find shoes that fit and didn't cause me pain. What he ended up doing was releasing a tendon and fusing my big toe, and felt that maybe I'd even be able to walk again.

Where I am now, I have good days and bad days. Sometimes I can walk short distances, but my balance is still very bad and I risk falling by even standing up. It's about the same as it was before, and now I'm pretty worried that I'll never be able to walk like I used to as a kid. I don't know what to do. It just seems like I won't improve past what I've accomplished. I feel like maybe I didn't do enough, sometimes, but I read that a percentage of people with CP just lose the ability to walk as they get older. I just really want to know why I can't improve.

I was also diagnosed with Lupus a few years ago, and it's going to go to my joints as I get older. I may lose the ability to walk altogether in that case, so it makes me wonder if I should stop trying to walk at all.

Last edited by Administrator; 07-13-2017 at 01:40 PM.

 
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