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Re: [Adults AMC] Fwd: Arthro support Group

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    lol ok its been a long week, let me try this again!!! I ll just copy & paste this time lol Theresa! Can cut and post the message below for me. The Yahoo
    Message 1 of 2 , May 29, 2005
      lol ok its been a long week, let me try this again!!! I'll just copy & paste
      this time lol

      Theresa! Can cut and post the message below for me. The Yahoo groups kicks
      my emails out because they are html based. Haven't figured out how to get
      any message posted. I really appreciate it. Hope all is well with you and
      your family.
      Hi all! Name is Pete Hughes and I have a pretty mild form of
      Arthrogryposis. Anyhow, I have trouble posting on this site for some reason so I'm asking
      Theresa for some help. You guys might be interested to know that in the last
      year I've met three other individuals with Arthrogryposis all playing
      collegiate level disabled sport. Including one para-olympic athlete who plays for
      University of Texas-Arlington. Two of us play on the University of Arizona's
      team and one is a track star for the University of Arizona. All of us are
      scholarshiped athletes so it's pretty exciting to see disabled sport grow.
      Anyhow, it's been driving me crazy not to be able to reply to some of your
      I'm sponsered/work for a wheelchair company called Colours wheelchair and
      also a cushion company called Supracore stimulite cushions. I'm lucky enough
      to play wheelchair b-ball around the world (In late July I'm off to Turkey for
      a tourny). Anyhow, in reference to the question that was just posted about
      what to look for in a wheelchair. Here are some of the basics, feel free to
      contact me for more specifics. You want your wheelchair to have these things
      1. You want it to be aestically pleasing to you. (for many of us a
      wheelchair is like a jacket that we wear a lot, we don't want to wear an ugly
      2. You want it to be light-weight. Anything over 25lbs. is too heavy. If
      you have to transfer it into your car you don't want to destroy your arm
      muscles lifting a heavy chair. Also the lighter the chair the easier to manuever
      in the chair.
      3. You want it to fit like a glove. The tighter the chair the better it
      handles. My sports chair (I only use a chair for sports--it's custom built
      because my legs are straight) I can move left and right without touching the
      wheels, just by shifting my weight.
      4. You want it to be comfortable (this is probably most important)! When
      getting fitted for a chair make sure the dealer or Physical therapist who is
      doing the measurments knows how to fit. You do not want to be the "learning
      process" for a new PT. Many of the better chairs have adjustability built
      into them. You can decide where your center of gravity should be, what camber
      on the wheels after you get the chair. But the basic frame, once ordered is
      not adjustable so you need a person to measure you correctly.
      5. For many of us (due to our personal positioning) we may need to have a
      chair custom built for us. That may mean going to some of the smaller
      wheelchair companies (like Colours). You also want a warrenty on the frame.
      Parents should look into growth programs for their little ones.
      6. Cost--Most ultra-light ridgid-framed wheelchairs cost anywhere from
      1500-3000 range. Many insurances will cover a wheelchair providing you can prove
      it is neccessary. Do a search online to educate yourself on them or contact
      me at _coachhughes50@..._ (mailto:coachhughes50@...) for
      additional questions. For individuals with upper extremity issues they now
      have mannual wheelchairs with power assist wheels and attachments for people
      that only have use of one arm. If you are athletic and are looking to get a
      sports chair, mono-ski, racing chair or handcycle and don't have the $ for it
      you should look into Challenged athletes foundation (CAF.ORG). Which is a
      non-profit organization out of San Diego that gives aways sports related items
      twice a year all around the USA.
      A couple years ago, I realized that with age (I'm now 34) I was having more
      pain in my shoulders, wrists and feet (excessive use of crutches, arthritus in
      the feet) to alleviate this I had orthotics made for my shoes, and started
      giving my shoulders a day off by using the wheelchair instead of crutches once
      or twice a week. I feel this has worked very well for me, as well as
      gotten me in pretty good shape (pushing the chair around). OK, enough of this
      book. I enjoy reading your posts, hopefully I'll find a way to post easier.
      Pete Hughes

      [Non-text portions of this message have been removed]
    • azah mohamad
      TERRY2745@AOL.COM wrote: Hello Pete, I m Azah, I have a child with AMC both hands and legs are diable, Azrul is 7 years old now. He had an operation to improve
      Message 2 of 2 , Aug 22 11:15 PM
        TERRY2745@... wrote:
        Hello Pete,

        I'm Azah, I have a child with AMC both hands and legs are diable, Azrul is 7 years old now. He had an operation to improve his clubfoot when he was one year old. However he still cannot walk and now his legs are getting thinner coz besides sitting down at school (from 7am till 12am) when he comes home he just lies around. My husband and I works fulltime so he's left with his older(aged 10 & 9 years old) brothers at home during weekdays thus he gets no exercise. We wanted to buy him an electric wheelchair but its very expensive in my country Malaysia around USD$5,000. We did ask a few charity organization in my country to donate but they wanted to give us the manual wheelchair which we think will be wasted on Azrul becoz he cannot move the wheel due to his disable handswhich is not very strong. The other reason why we wanted an electric chair is becoz he can play with the computer keyboard very well and thus we are confident that he will be able to operate the wheelchair's switch or
        whatever. I would be very happy if you can offer me some suggestions.


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