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Re: [Adults AMC] Re: New to the Group.. 55 yr old in MA.. saying 'hello'

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  • TRACY ULRICH
    Steve, I live in Mass and would love to find a hand peddled bike. Could you give me the info about purchasing one?  Thanks.  Maybe we can actually meet. It s
    Message 1 of 7 , Feb 20 6:22 PM
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      Steve,

      I live in Mass and would love to find a hand peddled bike. Could you give me the info about purchasing one?  Thanks.  Maybe we can actually meet.
      It's been a very long time since I have written here, and last time I was probably living in CA and playing pool seriously.  I quit the game for now and have been going back to college.  I'm happy to say that I am graduating this May.  Wow, I can't believe it.
      My body has been doing great since I begged my doctor to put me on methadone for my pain.  I'm about 95 percent pain-free now and my life has changed.  I love life so much more now that I can see (so to speak).
      Up to date: Both my legs were affected with AMC, I still don't know what kind tho, and have had 23 surgeries.  I have a total hip replacement, anckles are fused, and my knees bend here and there.  I live alone with my cat Lily and I can't see that changing anytime soon or at all.  Single for too long I guess.  :)  Best news is I've gone 10 years without surgery...my dream came true, and now my dream is for 15 years without surgery.

      I have to continue to study for a big test coming up.  
      Best wishes to everyone
       
      tau
      Tracy Ann




      ________________________________
      From: spustell <pustell_se@...>
      To: amc_adults@yahoogroups.com
      Sent: Sat, February 20, 2010 1:52:38 PM
      Subject: [Adults AMC] Re: New to the Group.. 55 yr old in MA.. saying 'hello'

       
      Hello Tribbey.

      Thanks for your reply. I think part of this (on the part of the medical community) is because there is little more they can do to improve our condition once we are adults. I don't know about you, but my current issues are very similar to just aging .. but since I started with much less.. I am deteriorating at a much faster rate. I have 'less distance to fall'. so to speak. I had actually expected this which is why I haven't really had much to do with specialists since my last treatment at 17.

      But I have to believe that some of the therapies developed for sports related injury to joints could help us retain what we have longer.

      have to run now. But again. thank you for the reply.

      God Bless

      Steve P

      --- In amc_adults@yahoogro ups.com, "mrpeaches98382" <catpower@.. .> wrote:
      >
      > Hello Steve,
      >
      > I'm Tribbey and I'm 53 yrs old, my Arthrogryposis affects all four of my limbs, have very little use of hands, so I do most everything with my mouth; writing, typing, cooking ec.... Still able to walk, but do it mostly indoors.
      > I'm a retired Purchasing Agent for the US Navy, married 33yrs, one daughter and one grandson.
      > You asked about medical professionals out in your area, well sad to say no matter where you happen to live now-days, being an Adult with AMC does not seem to matter to the medical community. Being a child with AMC is great because you're offered all kinds of medical treatments, but now that you've grown up forget it. I'm not just saying this to be negative, but most other AMC Adults will tell you the same thing, about lack of medical care for adults with AMC. They should really be ashamed of themselves too.
      >
      > Tribbey AMC Lady in Sequim Washington
      >
      >
      > --- In amc_adults@yahoogro ups.com, "spustell" <pustell_se@ > wrote:
      > >
      > > Hello all. I am 55 and have had arthrogroposis all my life (obviously :-) ). I in in Massachusetts and have not bother to do much since my last surgery when I was 17. I am starting to realize I should seek out some medical professional to touch bases with so I started looking around for options.
      > >
      > > So my 1st question.. does anyone have any medical professionals in the Boston Area or Southern NH you would recommend I make contact with?
      > >
      > > Just to round out the biography ..
      > > - Mostly affected in my lower extremeties. . however I am affected everywhere. .. I walk with 2 cains.. I probably should use crutches.
      > > - Graduated college in 77, maried in 78, still married to the same woman, employed as an SAP Basis Consultant (computers), 4 children ages 14 to 24 (none of them have Arthrogryposis, all of them are great fun!).
      > > - have been able to drive most cars, and love standard transmissions, but my wife enjoys that she can drive an MG and i cannot!! (sigh.. life can be unfair)..
      > > - Been a pilot since 82, but gave up flying to have kids.. I hope I'll be able to fly again soon .. but it is not inexpensive.
      > > - Physically I have let myself go, and I need to get back into shape before it is too late.
      > > .. I do hand cycling. have dome some cross country skiing with an adaptive sled, and just started to learn to ski downhill on a mono ski.
      > >
      > > Am active in my local church, and am evengelical.
      > >
      > >
      > > Enough about me. Just thought I'd get as much as i can out of the way 1st. I am looking forward to hearing from others .. and I hope people can answer my question about professionals in the area. I have to be honest and say that I am pretty busy .. so I am not likely to get involved in long and deep and frequent commuications. . but at the same time I am looking forward to expanding my connections to fellow arthrogrypotics.
      > >
      > > thanks so much
      > >
      > > Steve Pustell
      > >
      >




      [Non-text portions of this message have been removed]
    • Jen
      Hi Tracy,     I live in NH and have AMC and recently have been looking for a hand bike myself.  I went to this bike trial at UNH put on by Northeast
      Message 2 of 7 , Feb 20 7:04 PM
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        Hi Tracy,
            I live in NH and have AMC and recently have been looking for a hand bike myself.  I went to this bike trial at UNH put on by Northeast Passage.  It was really neat and I had the opportunity to try out several different types of bikes to see which was best for me.  The folks there are very innovative and help to fit you to a bike.  Its worth a shot. http://www.nepassage.org/%c2%a0Hope this helps with your search!  Congrats on the ten year mark!
        Jen

        --- On Sat, 2/20/10, TRACY ULRICH <tautracy@...> wrote:


        From: TRACY ULRICH <tautracy@...>
        Subject: Re: [Adults AMC] Re: New to the Group.. 55 yr old in MA.. saying 'hello'
        To: amc_adults@yahoogroups.com
        Date: Saturday, February 20, 2010, 9:22 PM


         



        Steve,

        I live in Mass and would love to find a hand peddled bike. Could you give me the info about purchasing one?  Thanks.  Maybe we can actually meet.
        It's been a very long time since I have written here, and last time I was probably living in CA and playing pool seriously.  I quit the game for now and have been going back to college.  I'm happy to say that I am graduating this May.  Wow, I can't believe it.
        My body has been doing great since I begged my doctor to put me on methadone for my pain.  I'm about 95 percent pain-free now and my life has changed.  I love life so much more now that I can see (so to speak).
        Up to date: Both my legs were affected with AMC, I still don't know what kind tho, and have had 23 surgeries.  I have a total hip replacement, anckles are fused, and my knees bend here and there.  I live alone with my cat Lily and I can't see that changing anytime soon or at all.  Single for too long I guess.  :)  Best news is I've gone 10 years without surgery...my dream came true, and now my dream is for 15 years without surgery.

        I have to continue to study for a big test coming up.  
        Best wishes to everyone
         
        tau
        Tracy Ann

        ____________ _________ _________ __
        From: spustell <pustell_se@iname. com>
        To: amc_adults@yahoogro ups.com
        Sent: Sat, February 20, 2010 1:52:38 PM
        Subject: [Adults AMC] Re: New to the Group.. 55 yr old in MA.. saying 'hello'

         
        Hello Tribbey.

        Thanks for your reply. I think part of this (on the part of the medical community) is because there is little more they can do to improve our condition once we are adults. I don't know about you, but my current issues are very similar to just aging .. but since I started with much less.. I am deteriorating at a much faster rate. I have 'less distance to fall'. so to speak. I had actually expected this which is why I haven't really had much to do with specialists since my last treatment at 17.

        But I have to believe that some of the therapies developed for sports related injury to joints could help us retain what we have longer.

        have to run now. But again. thank you for the reply.

        God Bless

        Steve P

        --- In amc_adults@yahoogro ups.com, "mrpeaches98382" <catpower@.. .> wrote:
        >
        > Hello Steve,
        >
        > I'm Tribbey and I'm 53 yrs old, my Arthrogryposis affects all four of my limbs, have very little use of hands, so I do most everything with my mouth; writing, typing, cooking ec.... Still able to walk, but do it mostly indoors.
        > I'm a retired Purchasing Agent for the US Navy, married 33yrs, one daughter and one grandson.
        > You asked about medical professionals out in your area, well sad to say no matter where you happen to live now-days, being an Adult with AMC does not seem to matter to the medical community. Being a child with AMC is great because you're offered all kinds of medical treatments, but now that you've grown up forget it. I'm not just saying this to be negative, but most other AMC Adults will tell you the same thing, about lack of medical care for adults with AMC. They should really be ashamed of themselves too.
        >
        > Tribbey AMC Lady in Sequim Washington
        >
        >
        > --- In amc_adults@yahoogro ups.com, "spustell" <pustell_se@ > wrote:
        > >
        > > Hello all. I am 55 and have had arthrogroposis all my life (obviously :-) ). I in in Massachusetts and have not bother to do much since my last surgery when I was 17. I am starting to realize I should seek out some medical professional to touch bases with so I started looking around for options.
        > >
        > > So my 1st question.. does anyone have any medical professionals in the Boston Area or Southern NH you would recommend I make contact with?
        > >
        > > Just to round out the biography ..
        > > - Mostly affected in my lower extremeties. . however I am affected everywhere. .. I walk with 2 cains.. I probably should use crutches.
        > > - Graduated college in 77, maried in 78, still married to the same woman, employed as an SAP Basis Consultant (computers), 4 children ages 14 to 24 (none of them have Arthrogryposis, all of them are great fun!).
        > > - have been able to drive most cars, and love standard transmissions, but my wife enjoys that she can drive an MG and i cannot!! (sigh.. life can be unfair)..
        > > - Been a pilot since 82, but gave up flying to have kids.. I hope I'll be able to fly again soon .. but it is not inexpensive.
        > > - Physically I have let myself go, and I need to get back into shape before it is too late.
        > > .. I do hand cycling. have dome some cross country skiing with an adaptive sled, and just started to learn to ski downhill on a mono ski.
        > >
        > > Am active in my local church, and am evengelical.
        > >
        > >
        > > Enough about me. Just thought I'd get as much as i can out of the way 1st. I am looking forward to hearing from others .. and I hope people can answer my question about professionals in the area. I have to be honest and say that I am pretty busy .. so I am not likely to get involved in long and deep and frequent commuications. . but at the same time I am looking forward to expanding my connections to fellow arthrogrypotics.
        > >
        > > thanks so much
        > >
        > > Steve Pustell
        > >
        >

        [Non-text portions of this message have been removed]











        [Non-text portions of this message have been removed]
      • Patty Clarke
        Hi Steve, I have always been followed by orthopaedic surgeon as a child ad now as an adult see regularly , adult orthopaedic surgeon, neurologist and
        Message 3 of 7 , Feb 27 12:39 PM
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          Hi Steve, I have always been followed by orthopaedic surgeon as a child ad
          now as an adult see regularly , adult orthopaedic surgeon, neurologist and
          physiatrist. I have never seen anyone who just sees people with AMC, since
          there are no such specialty here in Vancouver, BC. I did see a geneticist
          one for an evaluation into what kind of AMC I had etc. Most of the doctors
          that I have seen and continue to see do see a number of people with AMC, so
          there is a knowledge base but no one specializing in AMC only.



          Patty.



          From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
          Behalf Of spustell
          Sent: February-16-10 3:21 PM
          To: amc_adults@yahoogroups.com
          Subject: [Adults AMC] New to the Group.. 55 yr old in MA.. saying 'hello'





          Hello all. I am 55 and have had arthrogroposis all my life (obviously :-) ).
          I in in Massachusetts and have not bother to do much since my last surgery
          when I was 17. I am starting to realize I should seek out some medical
          professional to touch bases with so I started looking around for options.

          So my 1st question.. does anyone have any medical professionals in the
          Boston Area or Southern NH you would recommend I make contact with?

          Just to round out the biography ..
          - Mostly affected in my lower extremeties.. however I am affected
          everywhere. .. I walk with 2 cains.. I probably should use crutches.
          - Graduated college in 77, maried in 78, still married to the same woman,
          employed as an SAP Basis Consultant (computers), 4 children ages 14 to 24
          (none of them have Arthrogryposis, all of them are great fun!).
          - have been able to drive most cars, and love standard transmissions, but my
          wife enjoys that she can drive an MG and i cannot!! (sigh.. life can be
          unfair)..
          - Been a pilot since 82, but gave up flying to have kids.. I hope I'll be
          able to fly again soon .. but it is not inexpensive.
          - Physically I have let myself go, and I need to get back into shape before
          it is too late.
          .. I do hand cycling. have dome some cross country skiing with an adaptive
          sled, and just started to learn to ski downhill on a mono ski.

          Am active in my local church, and am evengelical.

          Enough about me. Just thought I'd get as much as i can out of the way 1st. I
          am looking forward to hearing from others .. and I hope people can answer my
          question about professionals in the area. I have to be honest and say that I
          am pretty busy .. so I am not likely to get involved in long and deep and
          frequent commuications.. but at the same time I am looking forward to
          expanding my connections to fellow arthrogrypotics.

          thanks so much

          Steve Pustell





          [Non-text portions of this message have been removed]
        • SteveP
          Hello Tracy Ann. sorry to take so long to reply. I ve been a bit busy with both work and life. I have 2 great hand cycle resources to recomemnt Scott at
          Message 4 of 7 , Mar 3, 2010
          • 0 Attachment
            Hello Tracy Ann. sorry to take so long to reply. I've been a bit busy with both work and life.

            I have 2 great hand cycle resources to recomemnt

            Scott at Bike-on is disabled himself and has one of the premire handcycle stores and sites in the country. AND he is located in RI so you can get there and look at some of his stuff. The web site is http://bike-on.com . Don't be scared at the prices. Contact them and let them know what you can spend, and they will help you look for used ones which might work. Tell Scot I said 'Hi' when you contact them.

            Also. Northeast passage (http://www.nepassage.org/) is a great program run out of the U of NH in Durham. They have lots of good equipment (not just handcycles) that you can rent to learn how well it will work for you. They also run seasonal programs which feature the different sports the disabled can particiapte in.

            I just last week rented a cross country ski sled from them and went skiing with my wife, and brother and his wife. Hard work, but a fun time. Their 'learn to do' programs are fantastic. In the spring they will have a big gathering of handcycles so you can test and try and talk to people who do it. I am currently modifying my hand cycle with a conventional trike so my wife and I can hook them together and get a tandem. We hope to keep together more when cycling. If I get it all done before NE passage does their demo days I'll bring it up there to show off the idea.

            I have been trying mono-skiing as well (which is where we were over the weekend. There is a really good program at mount Sunapee in NH and also at mount Wachusett here in MA

            Check out www.abilityplus.org and http://www.nehsa.org/. The folks at NEHSA took some movies of my training and when I get the links I'll send them along.

            We really had a lot of fun.. I know I am getting better at it because they let me fall down all the time now. :-)


            So I am glad you are feeling better and interested in getting out there and getting active .. I hope this information has helped.

            Steve P


            --- In amc_adults@yahoogroups.com, TRACY ULRICH <tautracy@...> wrote:
            >
            > Steve,
            >
            > I live in Mass and would love to find a hand peddled bike. Could you give me the info about purchasing one?  Thanks.  Maybe we can actually meet.
            > It's been a very long time since I have written here, and last time I was probably living in CA and playing pool seriously.  I quit the game for now and have been going back to college.  I'm happy to say that I am graduating this May.  Wow, I can't believe it.
            > My body has been doing great since I begged my doctor to put me on methadone for my pain.  I'm about 95 percent pain-free now and my life has changed.  I love life so much more now that I can see (so to speak).
            > Up to date: Both my legs were affected with AMC, I still don't know what kind tho, and have had 23 surgeries.  I have a total hip replacement, anckles are fused, and my knees bend here and there.  I live alone with my cat Lily and I can't see that changing anytime soon or at all.  Single for too long I guess.  :)  Best news is I've gone 10 years without surgery...my dream came true, and now my dream is for 15 years without surgery.
            >
            > I have to continue to study for a big test coming up.  
            > Best wishes to everyone
            >  
            > tau
            > Tracy Ann
            >
            >
            >
            >
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