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

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  • knit1wit
    HI! I m a 56-year old female living in the US with AMC. All my limbs (miniturized) are involved, and I ve had over 70 orthopedic surgeries to correct the
    Message 1 of 3 , Apr 12, 2013
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      HI! I'm a 56-year old female living in the US with AMC. All my limbs (miniturized) are involved, and I've had over 70 orthopedic surgeries to "correct" the problems of club feet and hands, severely deformed hip and knee bone construction, as well as severe elbow and knee restriction. Surgeries include: left knee virtually rebuilt, bilateral hip bone and tendon reconstruction, right foot reconstruction with bone fusion of big toe, tendon and muscle transplants, and skin flap removals on the face and neck. Still have skin flaps on my thighs and upper arms. For the most part, the surgeries did have minimal physical advantages. However, it did not prevent loss of muscle tone and strength ability as I've aged.

      Generally regarding AMC and aging: Most of my life I have been able, with a lot of effort, to control my weight. However, now that I am older I have found Doctors to be of no help whatsoever. I've been told, "We don't know how to help you because most with AMC die young. If you try to loose weight any conventional way, you will destroy what is left of your joints and muscles. So just be glad you are alive." Not kidding. NOTE: in spite of all this, I did work as a Medical Technologist for over 25 years before being told I had to retire on disability or die because I could not physically endure keeping a job, my health, and managing my home on my own without substantially shortening my life to 2-3 years (that was 17 years ago). So I did retire from active employment. And I am still alive and lovin' every minute of it!

      I was put on Prednisone for massive joing inflamation, then gained a ridiculous amount of weight which I have (so far) been unable to get rid of at all. It is worth noting here that my caloric intake is 800-1000 calories per day max on medical advice with a lot of protein so that I do not deplete what is left of my muscles. I do keep active, but am now mostly restricted to a power wheelchair. Have developed severe sciatic nerve problems, and an associated neuropathy in my lower extremeties.

      I tire very easily, and have alot of fatigue, which the medical "best guess" is a "variation of post-polio syndrome". I no longer drive a car because of the medication I am using for the sciatic nerve problems.

      Cannot afford physical therapy, so I went thru a one-time program, got the exercise list, and follow it on my own for range-of-motion exercises and strength-building on a daily basis. This one activity takes up most of my day, with the rest filled out by activities of daily living. Personal hygeine is my biggest time consumer. With that said, I do function independently, with the exception of meal preparation. Cleaning house is a no-no, so I live with a cousin so as not to be alone. No, I am not married, nor do I have any children.

      Bottom Line: Medical Science, at least in my case, is unable to help. I take each day as a gift, and thank God for every moment I am alive. Positive attitude is everything. I do what I can, when I can, and "go with the flow" (as it were). Every moment is precious to me, and in spite of my circumstances, I persevere and am glad to be alive. My hobby is fiber arts and am accomplished in weaving, knitting, crochetting, loom knitting, and lace knitting/crochetting. You can see that I keep my hands busy!

      In the final analysis, medicine knows just so much, and (as the doctors have admitted to me) those of us who are aging with AMC are literally "writing the book" for the medical professionals!
    • becky deaver
      Hi there knit1wit, I m Becky.  I am 60 years old and have AMC.  Many of my joints are involved and the degree I can move my elbows and knees is very limited.
      Message 2 of 3 , Apr 13, 2013
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        Hi there knit1wit, I'm Becky.  I am 60 years old and have AMC.  Many of my joints are involved and the degree I can move my elbows and knees is very limited.  Some of my muscles are atrophied, especially my bicep muscles. I grew up with two older siblings and wonderful parents who did everything they could to help me live a main stream life.  Although I was obviously limited in certain things, until I reached my late 40s and began to gain weight, did I find any major problems.  (I blame much of the weight gain on the fact that I got married to a terrific man who is a great cook)  LOL!

        In my late 50s and now at 60 I have a lot of problems with stamina.  Of course the weight makes even more range of motion problems and does a number on my knees and hips.  Also I had other medical problems - including a severe iron deficiency - which added to the situation.  I can no longer walk around in stores and can not stand for very long.  Actually I was able to retire recently and that has helped me conserve energy for some household chores.  (I was a librarian before my retirement).

        I have never had operations - didn't have club feet etc.  The only comment I ever got from a medical person was they wondered why I hadn't had a tendon release operation as a kid.  I don't think it was ever suggested to my parents, so it didn't happen.  Also, I saw a Dr. from Children's Hospital in Boston when I was an infant to maybe toddler, but there was never any more follow-up. I have never found a Dr. in MA anyway who would even see an adult with AMC.  

        Considering weight gain is normal as we age - and like yourself, there can be other factors contributing to it - I think it is like everything else we experience as adults with AMC...... Stuff everyone else experiences BUT harder/worse and more debilitating.  I have no answers, but I do know that with the problems I have, like you, I enjoy every day I'm here!

        Becky




        ________________________________
        From: knit1wit <mroberts@...>
        To: amc_adults@yahoogroups.com
        Sent: Friday, April 12, 2013 12:48 PM
        Subject: [Adults AMC] RE: I'm after any info i can get on Arthrogryposis and aging



         
        HI! I'm a 56-year old female living in the US with AMC. All my limbs (miniturized) are involved, and I've had over 70 orthopedic surgeries to "correct" the problems of club feet and hands, severely deformed hip and knee bone construction, as well as severe elbow and knee restriction. Surgeries include: left knee virtually rebuilt, bilateral hip bone and tendon reconstruction, right foot reconstruction with bone fusion of big toe, tendon and muscle transplants, and skin flap removals on the face and neck. Still have skin flaps on my thighs and upper arms. For the most part, the surgeries did have minimal physical advantages. However, it did not prevent loss of muscle tone and strength ability as I've aged.

        Generally regarding AMC and aging: Most of my life I have been able, with a lot of effort, to control my weight. However, now that I am older I have found Doctors to be of no help whatsoever. I've been told, "We don't know how to help you because most with AMC die young. If you try to loose weight any conventional way, you will destroy what is left of your joints and muscles. So just be glad you are alive." Not kidding. NOTE: in spite of all this, I did work as a Medical Technologist for over 25 years before being told I had to retire on disability or die because I could not physically endure keeping a job, my health, and managing my home on my own without substantially shortening my life to 2-3 years (that was 17 years ago). So I did retire from active employment. And I am still alive and lovin' every minute of it!

        I was put on Prednisone for massive joing inflamation, then gained a ridiculous amount of weight which I have (so far) been unable to get rid of at all. It is worth noting here that my caloric intake is 800-1000 calories per day max on medical advice with a lot of protein so that I do not deplete what is left of my muscles. I do keep active, but am now mostly restricted to a power wheelchair. Have developed severe sciatic nerve problems, and an associated neuropathy in my lower extremeties.

        I tire very easily, and have alot of fatigue, which the medical "best guess" is a "variation of post-polio syndrome". I no longer drive a car because of the medication I am using for the sciatic nerve problems.

        Cannot afford physical therapy, so I went thru a one-time program, got the exercise list, and follow it on my own for range-of-motion exercises and strength-building on a daily basis. This one activity takes up most of my day, with the rest filled out by activities of daily living. Personal hygeine is my biggest time consumer. With that said, I do function independently, with the exception of meal preparation. Cleaning house is a no-no, so I live with a cousin so as not to be alone. No, I am not married, nor do I have any children.

        Bottom Line: Medical Science, at least in my case, is unable to help. I take each day as a gift, and thank God for every moment I am alive. Positive attitude is everything. I do what I can, when I can, and "go with the flow" (as it were). Every moment is precious to me, and in spite of my circumstances, I persevere and am glad to be alive. My hobby is fiber arts and am accomplished in weaving, knitting, crochetting, loom knitting, and lace knitting/crochetting. You can see that I keep my hands busy!

        In the final analysis, medicine knows just so much, and (as the doctors have admitted to me) those of us who are aging with AMC are literally "writing the book" for the medical professionals!




        [Non-text portions of this message have been removed]
      • SteveP
        Oh.. i share your frustration with the medical establishment. Due to the severity of our various disabilities, Drs seem to think it enough if we can move some
        Message 3 of 3 , Apr 13, 2013
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          Oh.. i share your frustration with the medical establishment. Due to the severity of our various disabilities, Drs seem to think it enough if we can move some and operate some. Pain in my neck and shoulders has sidelined many of my activities since Sept of last year.. but the Orthopods are happy that i can move at all. They don't understand that loosing my upper body mobility is loosing ALL my mobility. I need more aggressive medical intervention or i will be so out of shape by the time i deteriorate to the point they are expecting, that i will be in no shape at all.. why bother with surgery of other significant treatment then.

          In my case I am 56 years old.. My Arthrogryposis itself does not seem to be getting worse.. but all the normal aging things are impacting me much sooner than they would a less impacted person of the same age. I have less 'good' stuff in my joints, and less muscle.. so as i loose it due to normal aging and ware and tear, the impact is felt much sooner.

          I hope to do all i can with exercise and use.. but i am still working full time, and have 2 of 4 children yet to get through college.. so an early retirement (to allow more therapy time) is not in my future for many more years.

          I realize my situation is not yours.. but i hope it leaves you feeling like you are not alone. I would love to interest some specialist in geriatrics to specialize in our 'early onset aging' to try to find ways to keep us operational. I have lots more i want to do. I don't want my productive years to be cut short.

          Does anyone else know of Drs' who are willing to work harder to keep us older folks going longer and more actively? I even tried specialist in sports medicine thinking they would be used to helping people maximize their capabilities.. but it seems I don't fit in their 'round holes' either.

          God Bless All
          Steve P

          --- In amc_adults@yahoogroups.com, "knit1wit" <mroberts@...> wrote:
          >
          > HI! I'm a 56-year old female living in the US with AMC. All my limbs (miniturized) are involved, and I've had over 70 orthopedic surgeries to "correct" the problems of club feet and hands, severely deformed hip and knee bone construction, as well as severe elbow and knee restriction. Surgeries include: left knee virtually rebuilt, bilateral hip bone and tendon reconstruction, right foot reconstruction with bone fusion of big toe, tendon and muscle transplants, and skin flap removals on the face and neck. Still have skin flaps on my thighs and upper arms. For the most part, the surgeries did have minimal physical advantages. However, it did not prevent loss of muscle tone and strength ability as I've aged.
          >
          > Generally regarding AMC and aging: Most of my life I have been able, with a lot of effort, to control my weight. However, now that I am older I have found Doctors to be of no help whatsoever. I've been told, "We don't know how to help you because most with AMC die young. If you try to loose weight any conventional way, you will destroy what is left of your joints and muscles. So just be glad you are alive." Not kidding. NOTE: in spite of all this, I did work as a Medical Technologist for over 25 years before being told I had to retire on disability or die because I could not physically endure keeping a job, my health, and managing my home on my own without substantially shortening my life to 2-3 years (that was 17 years ago). So I did retire from active employment. And I am still alive and lovin' every minute of it!
          >
          > I was put on Prednisone for massive joing inflamation, then gained a ridiculous amount of weight which I have (so far) been unable to get rid of at all. It is worth noting here that my caloric intake is 800-1000 calories per day max on medical advice with a lot of protein so that I do not deplete what is left of my muscles. I do keep active, but am now mostly restricted to a power wheelchair. Have developed severe sciatic nerve problems, and an associated neuropathy in my lower extremeties.
          >
          > I tire very easily, and have alot of fatigue, which the medical "best guess" is a "variation of post-polio syndrome". I no longer drive a car because of the medication I am using for the sciatic nerve problems.
          >
          > Cannot afford physical therapy, so I went thru a one-time program, got the exercise list, and follow it on my own for range-of-motion exercises and strength-building on a daily basis. This one activity takes up most of my day, with the rest filled out by activities of daily living. Personal hygeine is my biggest time consumer. With that said, I do function independently, with the exception of meal preparation. Cleaning house is a no-no, so I live with a cousin so as not to be alone. No, I am not married, nor do I have any children.
          >
          > Bottom Line: Medical Science, at least in my case, is unable to help. I take each day as a gift, and thank God for every moment I am alive. Positive attitude is everything. I do what I can, when I can, and "go with the flow" (as it were). Every moment is precious to me, and in spite of my circumstances, I persevere and am glad to be alive. My hobby is fiber arts and am accomplished in weaving, knitting, crochetting, loom knitting, and lace knitting/crochetting. You can see that I keep my hands busy!
          >
          > In the final analysis, medicine knows just so much, and (as the doctors have admitted to me) those of us who are aging with AMC are literally "writing the book" for the medical professionals!
          >
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