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Re: [Adults AMC] Advice on legs fixed straigtht

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  • David
    I agree with Pete here, I am 50 years old, and according to the doctors that took care of me from the time I was 6 days old untgil after I turned 21, I am one
    Message 1 of 18 , Apr 30, 2007
      I agree with Pete here, I am 50 years old, and according to the
      doctors that took care of me from the time I was 6 days old untgil
      after I turned 21, I am one of the more involved cases of amc. (all 4
      limbs and muscle mass in my torso). that being said, I have walked
      since about age 3, I had a total of 26 surgeries before I turned age
      16, most of them were experimental, because they didnt have many of
      us live long enough to understand what amc was or how it affected
      us. both my legs are straight, my right leg does bend about 12-15
      degrees, but thats because I wanted to be able to drive, and I pushed
      it, I worked it hard to get enough so that I could operate a car.
      there have been a few occasions where either of my knees did fully
      bend, on the two I remember most, my right leg bent abruptly when I
      was sledding and it broke....(ouch), the other was my left leg when I
      stepped of a bus, my knee bent fully, I sat down on the ground, well
      actually on my foot, a friend helped me back up and we went on about
      our day, over the next week or so my leg hurt, but it wouldnt bend
      again. As far as dealing with the esteem issue, I have always been
      looked at and criticised, do I like it? not even, but I learned
      something a long time ago, that is this, anyone that has a problem
      with seeing someone with a dissability, that is living their life as
      fully as possibly, has got a bigger dissability that the person that
      they are looking at, and/or making fun of. for the most part if I
      see a child staring at me or making comments about how strange or
      weird that I am, I will , if they are with an adult, talk to them and
      tell them that I just look strange, but I am human...usually, I have
      heard adults making comments, and I usually will ask them what their
      hidden dissability is other than being ignorant. I do tend to have a
      short tolerance level for people that should know better.
      I also know with my knees, and my hips, going bad, rapidly I will
      either have to quit walking or have the joints replaced, I have seen
      a surgeon that says the hips are no problem, but the knees will be,
      because they dont bend, and when I get up out of a chair I look kinda
      like a giraffe, when it bends down to get a drink, and I put a large
      ammount of lateral pressure on the joints. so my options in the not
      real distant future is a wheelchair, I am still digesting that
      option, and to me, after walking for my whole life, is a bitter pill
      to take, but its one that I will take it if I have too.


      --- In amc_adults@yahoogroups.com, TERRY2745@... wrote:
      > I'm 4warding petes post, 4 some reason it did not post on the
      > In a message dated 4/27/2007 8:47:24 PM Eastern Daylight Time,
      > coachhughes50@... writes:
      > I'd have to agree with Theresa. You are off-base with your last
      > Having straight legs (and being able to walk) in my case has been
      a distinct
      > advantage over my "seated" buddies. Traveling the world with
      other disabled
      > athletes I've seen it in a million different ways. Getting on
      airplanes (i
      > don't need anybodies help on the plane or into the restroom), as a
      walker you
      > have way less a chance of devoloping pressure sores from sitting
      to long,
      > the ability to stand gets you the oppurtunity to look strangers in
      the eye,
      > reach the cookies on the top shelf get out of the chair to climb
      stairs if
      > needed.
      > True, I agree that some cars are difficult to get into (I believe
      very tall
      > people have this problem as well), and movie seats use to be an
      issue before
      > they created disabled companion seats. I also agree that I get
      more strange
      > looks when walking then when in my custom made wheelchair (the
      wheelchair is
      > more common and very much accepted in society today). If you have
      a chance
      > to walk/stand (you can always use a wheelchair regardless your
      disabilty) and
      > it is a good chance (meaning the surgery is not actually going to
      > things worse, which is the key element in choosing to have a
      surgery) why pass it
      > by? If you are disabled, regardless if you walk like Frankenstein
      as I do,
      > or if you need a wheelchair you are going to face discrimination.
      > question should be what are the odds that your daughter get's
      worse from the
      > surgery. I would look more at what she has to lose, then what she
      has to gain,
      > since surgery is no guarantee. Always get a second opinion when
      it comes to
      > surgery, it can never hurt (except the wallet).
      > In my opinion, you should draw as much attention to your "faults"
      > possible so that when the person finally see's beyond these faults
      (and they will, my
      > beautiful wife is proof!), they also see the true you. The
      > effects an individual feels with dealing with their disability is
      due to their
      > attitude with dealing with their disability and not the disability
      > Sure, you may not be able to captialize on some very shallow
      > but who needs them...really?
      > Pete Hughes
      > AKA "The walking Stick" (my nickname in middle school)
      > ************************************** See what's free at
      > [Non-text portions of this message have been removed]
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