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  • Amanda
    I am a 28 yr old mother with AMC that has given birth to 3 beautiful girls ages 8,5 & 3. My oldest has won the Presidential Physical Award(that s a great deal
    Message 1 of 10 , Aug 30, 2007
      I am a 28 yr old mother with AMC that has given birth to 3 beautiful
      girls ages 8,5 & 3. My oldest has won the Presidential Physical
      Award(that's a great deal to someone in my condition that can't even
      run...
      One thing I have noticed from this site is how severe it can be.. I
      guess I'm blessed to not have it as bad. I have limited motion in my
      ankles, knees, and arms but am able to walk and do most normal
      things...I have a couple questions I am wondering about and need
      answers to...

      1.Does anybody know average life span with AMC..I feel like if our
      limited mobility would not be able to exercise would lead to
      unhealthy lifestyles...

      2.DO other people hurt everyday they wake up and find it hard to
      move?

      3.What type of meds do you take to help with the pain and make
      things better.

      I think all of us are blessed with what we have...I know it makes
      each one of us stronger!

      I will submit some pictures of myself and children...
    • Michelle
      Greetings Amanda, Your post with the three questions encouraged me to write back with some general answers that might help. I am 52 years young and have mild
      Message 2 of 10 , Aug 30, 2007
        Greetings Amanda,

        Your post with the three questions encouraged me to write back with
        some general answers that might help. I am 52 years young and have
        mild AMC as well in the same areas. I have led a very full and
        active life. You have been blessed with three children. I taught
        junior high for 25 years and still alive to tell about it! I chose
        not to have any children early on in life.

        Life span is normal for most, depending on how the AMC affects an
        individual. In some cases it might affect respiratory in cases like
        mine. I have scoliosis and that has complicated things to some
        degree as I have gotten older. Best answer to your question is what
        you do to take care of yourself. Routine exercise is always a plus
        (with three kids I can't imagine you are very sedentary) and keeping
        weight off is the best answer to staying fit. More weight will make
        the AMC worse since it affects bones, muscles and joints.

        Daily pain normal, yes, as I soon found out after I passed 40ish, and
        my respiratory issues became more prevelent. Lack of movement will
        increase the pain. Exercise will slow down the level of pain if you
        keep up with it and not wait till you get older and THEN decide to
        do something about it. I have found that water is my best friend and
        I try to get in the pool as often as possible. Easier on those
        joints etc...

        About 8 years ago, I was finally put on a pain med for stenosis of
        the lower spine and it was Arthrotec. That lasted for several years
        until I noticed its effect was not doing much for me anymore. So,
        depending on who your general doctor is and what he/she thinks would
        help is the best way to go. Beware, some of those pain meds might
        make you nauseous. Tylenol might be enough for starters.


        I hope you hear from some of the others from this group. I don't
        often get involved due to my busy schedule. I retired from teaching
        and went for a second career as as photographer/digital artist.

        Take care,

        Michelle King
        South Carolina





        amc_adults@yahoogroups.com, "Amanda" <cabart1@...> wrote:
        >
        > I am a 28 yr old mother with AMC that has given birth to 3 beautiful
        > girls ages 8,5 & 3. My oldest has won the Presidential Physical
        > Award(that's a great deal to someone in my condition that can't even
        > run...
        > One thing I have noticed from this site is how severe it can be.. I
        > guess I'm blessed to not have it as bad. I have limited motion in my
        > ankles, knees, and arms but am able to walk and do most normal
        > things...I have a couple questions I am wondering about and need
        > answers to...
        >
        > 1.Does anybody know average life span with AMC..I feel like if our
        > limited mobility would not be able to exercise would lead to
        > unhealthy lifestyles...
        >
        > 2.DO other people hurt everyday they wake up and find it hard to
        > move?
        >
        > 3.What type of meds do you take to help with the pain and make
        > things better.
        >
        > I think all of us are blessed with what we have...I know it makes
        > each one of us stronger!
        >
        > I will submit some pictures of myself and children...
        >
      • morne vanWyk
        Hi everyone, I agree with Michelle. As someone with mild AMC myself I can relate to (some) of the things said to Amanda. It was very interesting to note,
        Message 3 of 10 , Aug 31, 2007
          Hi everyone,

          I agree with Michelle. As someone with mild AMC myself I can relate to (some) of the things said to Amanda. It was very interesting to note, Michelle, that you're talking about experiencing pain post 40ish. I've experienced it since I could remember. As a child I remember experiencing mild muscle pain. And my mom used to rub in some pain reliever or I would get some pain medication from the doctor. But this was very rarely the case. I simply learned to live with it. However I'd like to stress that these pain that I used to experience, was never debilitating so much so that it would affect my daily life. Another aspect that I could relate to is the weight issue. I remember when I was a child, doctors used to express their concerns that my weight might become problematic for my joints especially my ancles. (smiling) Believe me, only now have I dicovered the joys of losing weight and being lighter! (Oh, and the other reason is because my doctor discovered that my cholesterol
          was too high). You are so right Michelle that exercizing helps. My sister is a fitness instructres and personal trainer. So, one day I pulled her to the side and ask her to develop a exercize plan for me and she did and it worked. Before I forget- my mom is also a teacher and turns 58 this year. She's a learning support teacher. Michelle, I must say that your are an inspiration to me, wow!. I would love to be a parent myself some day. Tell me do you drive a car? There's an issue that I would like to ask you guys about-dating. Will it be ok to share some of your experiences?

          Kind regards,
          Morne

          Michelle <lamaking2000@...> wrote:
          Greetings Amanda,

          Your post with the three questions encouraged me to write back with
          some general answers that might help. I am 52 years young and have
          mild AMC as well in the same areas. I have led a very full and
          active life. You have been blessed with three children. I taught
          junior high for 25 years and still alive to tell about it! I chose
          not to have any children early on in life.

          Life span is normal for most, depending on how the AMC affects an
          individual. In some cases it might affect respiratory in cases like
          mine. I have scoliosis and that has complicated things to some
          degree as I have gotten older. Best answer to your question is what
          you do to take care of yourself. Routine exercise is always a plus
          (with three kids I can't imagine you are very sedentary) and keeping
          weight off is the best answer to staying fit. More weight will make
          the AMC worse since it affects bones, muscles and joints.

          Daily pain normal, yes, as I soon found out after I passed 40ish, and
          my respiratory issues became more prevelent. Lack of movement will
          increase the pain. Exercise will slow down the level of pain if you
          keep up with it and not wait till you get older and THEN decide to
          do something about it. I have found that water is my best friend and
          I try to get in the pool as often as possible. Easier on those
          joints etc...

          About 8 years ago, I was finally put on a pain med for stenosis of
          the lower spine and it was Arthrotec. That lasted for several years
          until I noticed its effect was not doing much for me anymore. So,
          depending on who your general doctor is and what he/she thinks would
          help is the best way to go. Beware, some of those pain meds might
          make you nauseous. Tylenol might be enough for starters.

          I hope you hear from some of the others from this group. I don't
          often get involved due to my busy schedule. I retired from teaching
          and went for a second career as as photographer/digital artist.

          Take care,

          Michelle King
          South Carolina

          amc_adults@yahoogroups.com, "Amanda" <cabart1@...> wrote:
          >
          > I am a 28 yr old mother with AMC that has given birth to 3 beautiful
          > girls ages 8,5 & 3. My oldest has won the Presidential Physical
          > Award(that's a great deal to someone in my condition that can't even
          > run...
          > One thing I have noticed from this site is how severe it can be.. I
          > guess I'm blessed to not have it as bad. I have limited motion in my
          > ankles, knees, and arms but am able to walk and do most normal
          > things...I have a couple questions I am wondering about and need
          > answers to...
          >
          > 1.Does anybody know average life span with AMC..I feel like if our
          > limited mobility would not be able to exercise would lead to
          > unhealthy lifestyles...
          >
          > 2.DO other people hurt everyday they wake up and find it hard to
          > move?
          >
          > 3.What type of meds do you take to help with the pain and make
          > things better.
          >
          > I think all of us are blessed with what we have...I know it makes
          > each one of us stronger!
          >
          > I will submit some pictures of myself and children...
          >






          ---------------------------------
          Building a website is a piece of cake.
          Yahoo! Small Business gives you all the tools to get online.

          [Non-text portions of this message have been removed]
        • TERRY2745@AOL.COM
          1.Does anybody know average life span with AMC..I feel like if our ... AMCers have a life span just like anyone else, you take care of yourself, you live
          Message 4 of 10 , Aug 31, 2007
            1.Does anybody know average life span with AMC..I feel like if our
            > limited mobility would not be able to exercise would lead to
            > unhealthy lifestyles..
            AMCers have a life span just like anyone else, you take care of yourself,
            you live longer! There are ALWAYS ways to excercise! It might not be the way
            others do, but you can adapt! I highly recomend it!


            >
            > 2.DO other people hurt everyday they wake up and find it hard to
            > move?
            >
            some days Im stiffer when I 1st wake up, once I get moving Im fine!


            > 3.What type of meds do you take to help with the pain and make
            > things better.
            I only take OTC Powdered aspirin, its the only thing that helps me! Its BC
            powdered aspirin. I dont want to take any prescription meds...2 many diff side
            effects 4 me!


            >
            > I think all of us are blessed with what we have...I know it makes
            > each one of us stronger!

            AMEN to that! :)
            ~Theresa




            _www.hometown.aol.com/terry2745/index.html_
            (http://www.hometown.aol.com/terry2745/index.html)
            _www.amcsupport.org_ (http://www.amcsupport.org/) amcsupport, Inc Vice
            President



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          • TERRY2745@AOL.COM
            In a message dated 8/30/2007 8:59:20 PM Eastern Daylight Time, lamaking2000@yahoo.com writes: I hope you hear from some of the others from this group. I don t
            Message 5 of 10 , Aug 31, 2007
              In a message dated 8/30/2007 8:59:20 PM Eastern Daylight Time,
              lamaking2000@... writes:

              I hope you hear from some of the others from this group. I don't
              often get involved due to my busy schedule. I retired from teaching
              and went for a second career as as photographer/and went for a second care



              Hey Michelle, do you have any of your work online? Id LOVE to see it!!!!
              Im a watercolor artist.

              ~Theresa


              _www.hometown.aol.com/terry2745/index.html_
              (http://www.hometown.aol.com/terry2745/index.html)
              _www.amcsupport.org_ (http://www.amcsupport.org/) amcsupport, Inc Vice
              President



              ************************************** Get a sneak peek of the all-new AOL at
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              [Non-text portions of this message have been removed]
            • TUCMUM@aol.com
              I think that Theresa forgot that the other reason that she isn t in need of much stronger pain meds is because she goes to massage every other week. I know
              Message 6 of 10 , Aug 31, 2007
                I think that Theresa forgot that the other reason that she isn't in need of
                much stronger pain meds is because she goes to massage every other week. I
                know that for my son if he works out harder one day then normal or if he goes a
                few days with out doing it then he is tired and more sore just like any one
                else would be. Like when I take him swimming for the first time each summer he
                works a lot of muscles he don't normally use and is very sore for a couple
                of days...it is like pulling teeth to get him to go again...but I make it keep
                at it because I know he is only sore from no use of those muscles. I have
                always given him massage as well but I am still trying to find someone that
                will do it more often that actually knows what they are doing.

                Traci (Tucker's Mom 9 years old with AMC, in Central Ca.)



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              • rocks0508
                There are varying degrees of this disease represented here and I think each case is unique and has it own solutions and complications. I m not always sure I
                Message 7 of 10 , Aug 31, 2007
                  There are varying degrees of this disease represented here and I
                  think each case is unique and has it own solutions and complications.
                  I'm not always sure I have AMC after I see and hear some of your
                  stories. But I will tell you my history and answer your questions but
                  again remember that no case is exactly the same as the next one.

                  I am 37 and was born with AMC. No one else in my family has it not
                  even in the past. The areas affected are neck, vocal chords, jaw,
                  spine, shoulders, elbows, wrists, pinkies, hips, knees, and left
                  ankle. Now because I have AMC, I also have scoliosis, restrictive
                  lung disease (less than 20% lung capacity), secondary pulmonary
                  hypertension, the left hip is out of socket and arthritis throughout
                  most of my body. Most of my abdomen organs are shifted to the right
                  side. Exercise for me is almost impossible. The good thing is I only
                  weigh 75 lbs and only 4'10" so obesity isn't a problem. As for my
                  life span, it's not as long as most. I cannot have children or rather
                  cannot carry a baby. I have severe pain everyday and don't take
                  anything for it. I do get massages every week and they do help for a
                  bit. I cannot sit down so I stand most of the day. I have all my
                  life. I was holding a full-time demanding job until 2002 when my
                  lungs started giving out. I also use oxygen (was full-time but
                  currently only at night). So you see, there are varying degrees and
                  each case is unique. I say do what you can for as long as you can and
                  follow your doctor's guidelines. I have always hesitated to say what
                  all I have because I didn't want to scare parents. But sometimes info
                  is a good thing.

                  Good Luck and Best Wishes.
                  Roxianna


                  --- In amc_adults@yahoogroups.com, "Amanda" <cabart1@...> wrote:
                  >
                  > I am a 28 yr old mother with AMC that has given birth to 3 beautiful
                  > girls ages 8,5 & 3. My oldest has won the Presidential Physical
                  > Award(that's a great deal to someone in my condition that can't even
                  > run...
                  > One thing I have noticed from this site is how severe it can be.. I
                  > guess I'm blessed to not have it as bad. I have limited motion in my
                  > ankles, knees, and arms but am able to walk and do most normal
                  > things...I have a couple questions I am wondering about and need
                  > answers to...
                  >
                  > 1.Does anybody know average life span with AMC..I feel like if our
                  > limited mobility would not be able to exercise would lead to
                  > unhealthy lifestyles...
                  >
                  > 2.DO other people hurt everyday they wake up and find it hard to
                  > move?
                  >
                  > 3.What type of meds do you take to help with the pain and make
                  > things better.
                  >
                  > I think all of us are blessed with what we have...I know it makes
                  > each one of us stronger!
                  >
                  > I will submit some pictures of myself and children...
                  >
                • Neal Goldsmith
                  I have amc and have had surgeries on my feet when i was young. As far as pain goes during most of my life i have had very little pain. It has been in my later
                  Message 8 of 10 , Aug 31, 2007
                    I have amc and have had surgeries on my feet when i was young. As far as pain goes during most of my life i have had very little pain. It has been in my later years that i have noticed the pain and i think that is many due to old age and wear and tear on my lower limbs. my hips legs knees and feet were affected upper body was good. .................. Neal

                    rocks0508 <rocks0508@...> wrote: There are varying degrees of this disease represented here and I
                    think each case is unique and has it own solutions and complications.
                    I'm not always sure I have AMC after I see and hear some of your
                    stories. But I will tell you my history and answer your questions but
                    again remember that no case is exactly the same as the next one.

                    I am 37 and was born with AMC. No one else in my family has it not
                    even in the past. The areas affected are neck, vocal chords, jaw,
                    spine, shoulders, elbows, wrists, pinkies, hips, knees, and left
                    ankle. Now because I have AMC, I also have scoliosis, restrictive
                    lung disease (less than 20% lung capacity), secondary pulmonary
                    hypertension, the left hip is out of socket and arthritis throughout
                    most of my body. Most of my abdomen organs are shifted to the right
                    side. Exercise for me is almost impossible. The good thing is I only
                    weigh 75 lbs and only 4'10" so obesity isn't a problem. As for my
                    life span, it's not as long as most. I cannot have children or rather
                    cannot carry a baby. I have severe pain everyday and don't take
                    anything for it. I do get massages every week and they do help for a
                    bit. I cannot sit down so I stand most of the day. I have all my
                    life. I was holding a full-time demanding job until 2002 when my
                    lungs started giving out. I also use oxygen (was full-time but
                    currently only at night). So you see, there are varying degrees and
                    each case is unique. I say do what you can for as long as you can and
                    follow your doctor's guidelines. I have always hesitated to say what
                    all I have because I didn't want to scare parents. But sometimes info
                    is a good thing.

                    Good Luck and Best Wishes.
                    Roxianna

                    --- In amc_adults@yahoogroups.com, "Amanda" <cabart1@...> wrote:
                    >
                    > I am a 28 yr old mother with AMC that has given birth to 3 beautiful
                    > girls ages 8,5 & 3. My oldest has won the Presidential Physical
                    > Award(that's a great deal to someone in my condition that can't even
                    > run...
                    > One thing I have noticed from this site is how severe it can be.. I
                    > guess I'm blessed to not have it as bad. I have limited motion in my
                    > ankles, knees, and arms but am able to walk and do most normal
                    > things...I have a couple questions I am wondering about and need
                    > answers to...
                    >
                    > 1.Does anybody know average life span with AMC..I feel like if our
                    > limited mobility would not be able to exercise would lead to
                    > unhealthy lifestyles...
                    >
                    > 2.DO other people hurt everyday they wake up and find it hard to
                    > move?
                    >
                    > 3.What type of meds do you take to help with the pain and make
                    > things better.
                    >
                    > I think all of us are blessed with what we have...I know it makes
                    > each one of us stronger!
                    >
                    > I will submit some pictures of myself and children...
                    >






                    ---------------------------------
                    Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

                    [Non-text portions of this message have been removed]
                  • TERRY2745@AOL.COM
                    In a message dated 8/31/2007 1:21:26 PM Eastern Daylight Time, TUCMUM@aol.com writes: I think that Theresa forgot that the other reason that she isn t in need
                    Message 9 of 10 , Sep 4, 2007
                      In a message dated 8/31/2007 1:21:26 PM Eastern Daylight Time,
                      TUCMUM@... writes:

                      I think that Theresa forgot that the other reason that she isn't in need of
                      much stronger pain meds is because she goes to massage every other week.


                      OOPS, I 4got to add that part! I do think massage has helped TREMENDOUSLY!
                      Between staying active & massage I am doing well with no prescription pain
                      meds

                      ~Theresa



                      _www.hometown.aol.com/terry2745/index.html_
                      (http://www.hometown.aol.com/terry2745/index.html)
                      _www.amcsupport.org_ (http://www.amcsupport.org/) amcsupport, Inc Vice
                      President



                      ************************************** Get a sneak peek of the all-new AOL at
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                      [Non-text portions of this message have been removed]
                    • Amanda
                      Thanks to all who have answered my questions... I have realized that all of us our different with AMC...and it s nice to find out how others are dealing with
                      Message 10 of 10 , Sep 4, 2007
                        Thanks to all who have answered my questions... I have realized that
                        all of us our different with AMC...and it's nice to find out how
                        others are dealing with AMC

                        I have pain when I first wake up in the morning and gets better but if
                        I'm over active my body hurts.. that's were I have come into problems
                        I am obese 175 pounds and have gained that weight from the 3 children
                        and it's very hard to loose it with hurting so bad.. That's no excuse
                        to go out and eat a burger either..

                        That is my goal for this year is to lose weight and hopefully it will
                        help with AMC..

                        But again thanks to all and what a wonderful group that I have joined!

                        Amanda
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