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About Me
Palabravampiress
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About Me
I was born 3 months prematurely a little more than 25 years ago. By sheer luck, I managed to live, and then to walk, and then to function more or less normally in society despite the doctors' early prognosis. I walked away from it all with some surgical scars and with mild CP, the result of which was that gym class was a drag and that extra-curriculars like baseball, gymnastics, and dance didn't go so well. Balance and coordination were not my things. Also, my gait was a little funny. Then, of course, I had a lot of sprains and dislocations with which to deal. Physical tasks a little harder for me, but I coped. I took an interest in more solitary and/or adventure based sports like rock climbing and white water rafting rather than in team sports. Most importantly, I excelled in high school, college, and work. I got married. I am pursuing my dreams. Now, at the age of 25, I am beginning to experience problems again (loss of muscle tone in my legs is causing crookedness in my feet, ankles, knees, and legs and making it difficult to walk). I am headed to a neurologist soon to get an up-to-date handle on what's going on and to get back into therapy and to possibly get some braces for my legs. I'm actually looking forward to it; I'm hoping it will ease my muscle pain and fatigue and make basic tasks like walking and standing much easier for me.
I was born 3 months prematurely a little more than 25 years ago. By sheer luck, I managed to live, and then to walk, and then to function more or less normally in society despite the doctors' early prognosis. I walked away from it all with some surgical scars and with mild CP, the result of which was that gym class was a drag and that extra-curriculars like baseball, gymnastics, and dance didn't go so well. Balance and coordination were not my things. Also, my gait was a little funny. Then, of course,
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hang tough palabravampiress..my wife's dr tells her there is new research on a cure for cmt. may be in 5 to 10 yrs.
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Support Groups
Close Cerebral Palsy
I don't have much of a story, yet. I pretty much coped with/ignored my CP when I was a kid. My parents didn't mention it by name until I was 16, and even then, it was only in passing. I knew I was a little slow and that sports were not my area of expertise. I knew I'd had therapy when I was younger. But I didn't know much more than that. Up until now, I always thought I dodged the bullet and that the circumstances of my birth wouldn't affect me beyond making me hate team sports and school dances. I thought adult life would be easier because I wouldn't have to worry so much about physical tasks. Then, recently, during an unfortunately health-insurance-less year in which medical care was unavailable to me, I grappled with unexplained aches and fatigue, a marked decrease in abilities, and the sneaking, crazy-sounding suspicion that my toes, ankles, and legs were becoming more crooked. I also felt like tasks associated with entry level jobs and requiring quick response time, motor skills, and occasional heavy lifting, were disproportionately difficult for me, which makes me wonder how I'm supposed to get past the physical stuff to prove what I can do with my brain when it's hard for me to even walk to the grocery store. When I got health insurance and went to the GP, though, she said she thought my CP, which I had thought was non-progressive and would no longer influence my life, was probably to blame for my recent troubles. So here I am, getting ready to get tests and get therapy and braces to help me handle this as an adult -- because, apparently, CP affects more than just your ability to run the mile in gym class.
Close Charcot-Marie-Tooth Disease
I am in the process of being diagnosed with a neuromuscular disease. The doctors think it is Charcot Marie Tooth disease, but have not yet provided a definitive diagnosis.
Treatments
- Counseling Too Soon to Tell
- Not yet applicable. The doctors are talking about getting me into therapy and putting braces on my legs. Im hoping that will get me moving and therefore feeling better.
