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3619Re: [Adults AMC] RE: I'm after any info i can get on Arthrogryposis and aging

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  • becky deaver
    Apr 13 7:41 AM
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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!




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