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3612Re: i'm after any info i can get on Arthrogryposis and aging

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  • SteveP
    Feb 17, 2013
      Hello There .

      My name is Steve and I'm a 58 year old with arthrogryposis. i have had basically no treatment since i was 17 years old. There are a number of different flavors of Arthrogryposis .. so there is no certainty that your experience will match mine.. but this is what is happening to me.

      Officially, my arthrogryposis is not worse.. but i am aging 'faster' for lack of a better term.. then my same age peers who do not have AMC. I believe that this is because my components (muscles, joints, nerves) all have less to work with, so as i age i notice the impact sooner.. Likewise.. exercise is harder for me to do.. so i have gained more weight than my peers on average.. and more weight only magnifies the limitations i live under (think.. it is hard to do x, then, when i add 50 extra pounds.. it is going to be that much harder).

      So follow the advice that we give all aging adults.. but follow them much more rigorously.. participate in low impact full range activities (swimming, water calisthenics etc) as much as possible and as much as you are able. do strength training. Get Theropy help as much as you can afford.

      i have 4 kids, and was the sole income in my household.. so i did not do enough of this, and i am now paying the price. Believe me.. if it is hard to get out and be active at 31.. it is much more so at 58..

      Get out and do what you can.. Stay as active as you can, watch your weight, and enjoy your life to the fullest (and keep on strict plan of weight control) .. and your later years will be brighter than they might other wise be.

      I would also try to find an orthopedist who is interested in working with you as you age. I could not find one, and so let it go. I am not looking for motivated care in the area of sports medicine specialist.. they work with people who want to overcome injury in order to function at as high a level as possible. The orthopedists who treated me growing up (and who were GREAT doctors) really were focused on making me operational.. they did not understand that i don't just want to function.. i want to Thrive!

      ps.. I have been fortunate enough to figure out how to drive a standard (manual transmission car), how to ride a handcylce (they work better for me), to get my pilots license, to marry a woman who has a keen sense of adventure who has enjoyed travel (frugal travel with an RV trailer and staying in parking lots rather than campgrounds) and so have had a very full life.. The biggest joy of which has been raising my 4 children. Don't let the challenges of our circumstances of our lives keep you down. Get out.. so as much as you can in whatever way you can.. and enjoy. I can't do everything that others can.. but i can do some other things they Can't ..


      Steve p

      --- In amc_adults@yahoogroups.com, "Terry Elbmag" <keeganandjake@...> wrote:
      > i'm after any info i can get on Arthrogryposis and getting older i'm 31 years old with the club feet and clawed fingers, i live in newzealand and my bodys now failing me whtas the best thing to do to help ???
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