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

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  • Terry Elbmag
    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
    Message 1 of 5 , Feb 19, 2012
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      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 ???
    • Leslie Keller
      I d like any info on how to help with body failing as we age. 35 yr old female with all four limbs affected. ------------------------------ On Sun, Feb 19,
      Message 2 of 5 , Feb 20, 2012
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        I'd like any info on how to help with body failing as we age. 35 yr old female with all four limbs affected. ------------------------------ On Sun, Feb 19, 2012 1:40 PM PST Terry Elbmag 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 ??? >
      • becky deaver
        Hi - I m Becky - a 59 year old female from USA.  Mostly it is my elbows and knees that are the worst but most of my joints are effected in some way.  Trying
        Message 3 of 5 , Feb 20, 2012
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          Hi - I'm Becky - a 59 year old female from USA.  Mostly it is my elbows and knees that are the worst but most of my joints are effected in some way.  Trying to not gain weight (which I have failed at miserably) and trying to stay as active as possible are the only 2 things I know that help.  Drs are no help at all - for me anyway.  Best of luck
          Becky



          ________________________________
          From: Leslie Keller <kellerfamily1678@...>
          To: amc_adults@yahoogroups.com
          Sent: Monday, February 20, 2012 3:50 PM
          Subject: Re: [Adults AMC] i'm after any info i can get on Arthrogryposis and aging


           

          I'd like any info on how to help with body failing as we age. 35 yr old female with all four limbs affected. ------------------------------ On Sun, Feb 19, 2012 1:40 PM PST Terry Elbmag 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 ??? >



          [Non-text portions of this message have been removed]
        • Adrian and Rose Koolaard
          Hi I too live in New Zealand (north island) and also have AMC Most of my joints are effect especially hips and knees and feet. I too felt a decline in
          Message 4 of 5 , Feb 21, 2012
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            Hi I too live in New Zealand (north island) and also have AMC
            Most of my joints are effect especially hips and knees and feet. I
            too felt a decline in health\ mobility since the age of 35 ( I am 42)
            I think Becky's advice about not trying to gain weight and trying to
            stay active the best advice - I am currently trying to lose
            weight ! However I have had success of late with a rehab specialist
            Dr Jurriaan de Groot - he is a thoughtful specialist who thinks out
            of the square. Since seeing him in June last year my mobility
            has improved a little which really pleases me. Love to chat some
            more if you have time.

            Rose


            On 21/02/2012, at 3:34 PM, becky deaver wrote:

            > Hi - I'm Becky - a 59 year old female from USA. Mostly it is my
            > elbows and knees that are the worst but most of my joints are
            > effected in some way. Trying to not gain weight (which I have
            > failed at miserably) and trying to stay as active as possible are
            > the only 2 things I know that help. Drs are no help at all - for me
            > anyway. Best of luck
            > Becky
            >
            > ________________________________
            > From: Leslie Keller <kellerfamily1678@...>
            > To: amc_adults@yahoogroups.com
            > Sent: Monday, February 20, 2012 3:50 PM
            > Subject: Re: [Adults AMC] i'm after any info i can get on
            > Arthrogryposis and aging
            >
            >
            >
            >
            > I'd like any info on how to help with body failing as we age. 35 yr
            > old female with all four limbs affected.
            > ------------------------------ On Sun, Feb 19, 2012 1:40 PM PST
            > Terry Elbmag 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 ??? >
            >
            > [Non-text portions of this message have been removed]
            >
            >



            [Non-text portions of this message have been removed]
          • SteveP
            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
            Message 5 of 5 , Feb 17, 2013
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              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 ..

              Enjoy

              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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