I suppose I am the youngest person to post here, which makes my position relatively unapplicable to your husband. But, perhaps, I can share some of the knowledge I have gained.
I am now 20 years old, and am going to a college in Chicago, IL. Having grown up in Southern California, the weather is a big change! This is my third year, and I still have yet to determine whether my condition is simply changing due to age, or whether the temperature has had a permanent negative affect on my ability to function.
I was diagnosed with CMT at the age of 8, after my Mom was tired of me "dancing" around on my toes all of the time. I was very fortunate that the doctor who saw me actually knew what CMT was, or else I would have been diagnosed and treated for MS. I have had two surgeries on each foot, the last of which actually changed which tendons (and thus, which muscles) control various parts of my foot, to compensate for muscular imbalance. That surgery occurred four years ago, and because of it I am still able to walk.
When I was 14 I had a blood test done to make absolutely certain whether I had CMT or HNNP (Hereditary Neuropathy with Pressure Palsy), as that would have directly affected whether my parents allowed me to do anything related to sports. I have never been very athletic, except having danced my whole life, and was able to join Color Guard in HS after finding out I have CMT Type 1A, which is the most common.
It's been hard, having realized how much about my future is uncertain. Despite doctor's thoughts otherwise, I was a successful member of my Color Guard for nearly three whole years, and enjoyed it immensely. CMT caused me to drastically lose my reflexes in my hands, which ultimately affected my ability to compete. I also originally came to college to major in Architecture, but after only one semester realized that my hands do not have the strength to create the required models, in the given time, and didn't want to take 8 years just to get a B.Arch, when I could take 4 years to get a BS. in Civil Engineering. I am fortunate that my brain works well with math, as well as art, and I intend to use that to my advantage.
There are a lot of things CMT has taken away from me over my life, (including to be able to dance for more than two songs) though it is just the start, but many more things I have been given or able to learn. I have gained true friends, because they have all been tested with my inability to be 'normal' at any given point in time, and my regular need for help. CMT even helped me meet my wonderful boyfriend (I asked him to open my water bottle! awww), who is the most incredible encouragement, and always helps me remember that God made me beautiful; and that not being able to do something will never change that.
Life always takes its turns, and it is really easy to become discouraged when you look at all of the negative possibilities that other people have had to face. But the beauty of CMT is that it is different for everyone, and it still allows you to maintain the most important part of who you are: your mind, your heart, and your willingness to be more than your body will allow you to.
I have struggled with feelings of inadequacy due to CMT, certainly, but I am still able to live outside of my parents' home, inside of their love, and in the midst of friends. I am still able to show my intelligence and strengths not relating to physical strength, and there are more and more gadgets every day (and plenty of people) to help with those physical strengths I don't have, or am losing.
My legs hurt progressively more, and my handwriting is becoming somewhat slower and more painful, but one thing I have learned is that the brain is a powerful thing. I have re-ordered my pain tolerance several times in the last 8 years, in order to live without constant muscle pain or headaches relating to constant muscle pain. I have also re-gained (most) of my hand reflexes that I lost 4 years ago, because my brain has done the compensating for me. And I have been able to get up every day, stretch my legs so they are walk-able (albeit with pain) and continue on with my life.
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I suppose I am the youngest person to post here, which makes my position relatively unapplicable to your husband. But, perhaps, I can share some of the knowledge I have gained.
I am now 20 years old, and am going to a college in Chicago, IL. Having grown up in Southern California, the weather is a big change! This is my third year, and I still have yet to determine whether my condition is simply changing due to age, or whether the temperature has had a permanent negative affect on my ability to function.
I was diagnosed with CMT at the age of 8, after my Mom was tired of me "dancing" around on my toes all of the time. I was very fortunate that the doctor who saw me actually knew what CMT was, or else I would have been diagnosed and treated for MS. I have had two surgeries on each foot, the last of which actually changed which tendons (and thus, which muscles) control various parts of my foot, to compensate for muscular imbalance. That surgery occurred four years ago, and because of it I am still able to walk.
When I was 14 I had a blood test done to make absolutely certain whether I had CMT or HNNP (Hereditary Neuropathy with Pressure Palsy), as that would have directly affected whether my parents allowed me to do anything related to sports. I have never been very athletic, except having danced my whole life, and was able to join Color Guard in HS after finding out I have CMT Type 1A, which is the most common.
It's been hard, having realized how much about my future is uncertain. Despite doctor's thoughts otherwise, I was a successful member of my Color Guard for nearly three whole years, and enjoyed it immensely. CMT caused me to drastically lose my reflexes in my hands, which ultimately affected my ability to compete. I also originally came to college to major in Architecture, but after only one semester realized that my hands do not have the strength to create the required models, in the given time, and didn't want to take 8 years just to get a B.Arch, when I could take 4 years to get a BS. in Civil Engineering. I am fortunate that my brain works well with math, as well as art, and I intend to use that to my advantage.
There are a lot of things CMT has taken away from me over my life, (including to be able to dance for more than two songs) though it is just the start, but many more things I have been given or able to learn. I have gained true friends, because they have all been tested with my inability to be 'normal' at any given point in time, and my regular need for help. CMT even helped me meet my wonderful boyfriend (I asked him to open my water bottle! awww), who is the most incredible encouragement, and always helps me remember that God made me beautiful; and that not being able to do something will never change that.
Life always takes its turns, and it is really easy to become discouraged when you look at all of the negative possibilities that other people have had to face. But the beauty of CMT is that it is different for everyone, and it still allows you to maintain the most important part of who you are: your mind, your heart, and your willingness to be more than your body will allow you to.
I have struggled with feelings of inadequacy due to CMT, certainly, but I am still able to live outside of my parents' home, inside of their love, and in the midst of friends. I am still able to show my intelligence and strengths not relating to physical strength, and there are more and more gadgets every day (and plenty of people) to help with those physical strengths I don't have, or am losing.
My legs hurt progressively more, and my handwriting is becoming somewhat slower and more painful, but one thing I have learned is that the brain is a powerful thing. I have re-ordered my pain tolerance several times in the last 8 years, in order to live without constant muscle pain or headaches relating to constant muscle pain. I have also re-gained (most) of my hand reflexes that I lost 4 years ago, because my brain has done the compensating for me. And I have been able to get up every day, stretch my legs so they are walk-able (albeit with pain) and continue on with my life.
God is good, and this is not the end.
January 23, 2010 - 1:37pmThis Comment
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