CMT:

CMT1A is a rare (1:5,000) hereditary motor and sensory demyelinating peripheral neuropathy (also known as Hereditary Motor and Sensory Neuropathy, HMSN) which is caused by an intrachromosomal duplication and consecutive toxic overexpression of the PMP22 gene on chromosome 17. CMT1A is one of the most common inherited peripheral nerve-related disorders which is passed down through families in an autosomal dominant fashion. CMT1A disease becomes evident in young adulthood and slowly progresses with distally pronounced muscle weakness and numbness. Pain can range from mild to severe. The disease can be highly debilitating with patients becoming wheel chair-bound and is often accompanied by severe cases of neurological pain. There is no known cure for this incapacitating disease.

Tuesday, September 16, 2014

10 Minutes in Stander with Mitsy!

The stander has been proving to be a lot more difficult then I originally thought it was going to be but I am very proud of the progress I have made in it! My most recent accomplishment was sticking it out for 10 minutes as we raised the angle a bit! My husband Brandon has been helping me in the stander and my other wonderful supporter of my journey has been my best friend Misty, who came over the other day to support me in the stander. It was wonderful to have her support!

I have a extremely hard time with letting people see the pain I am in, really only Brandon has seen my struggle, when I go out, I hide it, I don't want people to feel sorry for me or feel uncomfortable. I am sure people have seen my pain but I try to hide it. So when Misty came over to help me, I knew she would see me in pain and I would not be able to hide it. I am very proud of myself that I opened up and let her see, she was truly incredible with me. After Brandon helped me out of the stander I did what always happens after, collapsed onto the bed and was in a lot of pain. Misty then took such good care of me, my legs were burning, it felt like my nerves had acid running through them, she went and got some Lavender oil from the cabinet and rubbed it into my legs and it helped so much!I am so thankful to have Brandon and Misty help me in this journey!

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