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1840Re: [Adults AMC] It's Been A Long Time...

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  • J C
    Jan 2, 2004
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      Hi Dan,
      I was really impressed with your letter. We can do more than we think if we put our mind to it. I was was married to a woman with cp for 19 years and we did fine. Of curse we had to have personal care attendants, but we over came lots of obsticles.
      What part of Kentucky do you live? I live in Monticello.

      Dan <dan@...> wrote:
      As the owner of this group, I have stayed silent far
      too long. I used to post somewhat actively, but then I
      For those who don't know me, my name is Dan, I'm 29
      (soon to be 30 in January) and I have arthrogryposis.
      I was always the type of person that wasn't really
      angered by my amc, but just felt that it held me back.
      Up until this year, I was still getting showered and
      dressed by my parents. I say "up until" because I can
      proudly say I FINALLY learned to do it all on my own.
      I was just never motivated to do it on my own because
      my parents were always there for me. Plus, I tried the
      dressing sticks and therapists recommendations, but
      they just never worked for me, no matter how hard I
      In November of 2002, I took a bold step. I traveled by
      myself from Florida to Kentucky to meet a fellow list
      member named Brooke. It took a lot of convincing on
      her part to get me to visit, cause of all the help
      that I would need. Her friend just happens to be a
      caretaker and she assured me that she would assist me
      in anything I need. My parents weren't sure if it was
      a good idea or not, but I went anyway. The trip was a
      success and we all got along great.
      The following 8 months, I traveled to Kentucky about
      12 times. Each time got easier, but I still wasn't
      able to completely dress myself.
      In July, Brooke and I had become so attached to each
      other, that I offered to move out of my parents house
      to be closer to her.
      She found an apartment for me that she felt would be
      perfect. It's a half mile away from her house. I
      checked it out a few weeks later and agreed that it
      was great. What sold me on it was that it had a shelf
      in the shower. I knew that would be convenient for me
      cause then I could pour shampoo onto it and then rub
      my head in it.
      I told my parents about the place and they thought it
      was a great opportunity. There was still that
      uncertainty of dressing myself though. By this time, I
      could put a shirt on and shorts/pants (as long as I'm
      wearing a belt). Socks were virtually impossible, same
      for combing my hair.
      I ended up getting the apartment. I just assumed that
      Brooke could help me daily until I could get a
      caretaker to visit me daily.
      When my parents came up with all of belongings, they
      looked for ways for me to do things on my own. A few
      things we came up with were:

      - A comb, glued to a piece of wood that is hung up on
      my wall. A mirror is hung next to it. That way I can
      move my head under the comb and I can do my hair

      - A scrub brush, suction cupped to the shower. After
      rubbing the shampoo on the shelf, I then bring my head
      to the brush to get it all in.

      - Toe nail clippers, screwed to a board. I lay a paper
      towel under the board and with the foot I'm not
      clipping, I use it to push down on the clippers.

      These have all worked great, but there was still the
      sock issue. I had ordered a sock aid a few weeks prior
      to moving, but I couldn't do it.
      My mom then came up with a great idea. Brooke's family
      had given me dining room table and chairs. The chairs
      just happened to have 4 legs, so my mom put the sock
      onto the front legs of the 2 chairs side by side, she
      then split the chairs, thus widening the sock and then
      inserted her foot. It worked perfectly for her, so I
      gave it a try and it was a success. I was so relieved.
      With that, I no longer needed to worry about needing a
      caretaker's assistance.
      My life has changed for the better since meeting
      Brooke. She has motivated me to do so much for myself.
      It has truly been a blessing having her a part of my
      We are now officially engaged, too. I gave her a nice
      ring on her birthday and proposed that same day.
      Living on my own just gets easier and easier each day.
      I don't really know why I typed all of this. I guess
      to show parents of children with amc some ideas that
      they can possibly use, or maybe I typed it all to let
      you know that I'm still alive...LOL

      Thanks for reading,

      AOL IM - Dango727
      Yahoo! - dango727

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