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.

Sunday, September 28, 2014

Stander Accomplishment

I am moving forward in my goal! I have accomplished being in the stander for 20 minutes, with hardly any pain!!! Today was my last time at this angle! Soon I should be able to be completely upright!! I will soon be adding more to my physical therapy routine in hopes of someday being able to walk again!

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!

Monday, September 8, 2014

A Rough Week

So the past week has been a rough one. On most days I can handle CMT emotionally pretty well, I am usually very positive but this past week has been one of those weeks I get every now and then where it seems like my CMT is shoving itself down my throat. The pain was extra bad this week probably because school started back up so I am having to do a lot more then usual. What has been the hardest part about this week was, just watching!!!! JUST WATCHING!!!! WATCHING!!!! It is so hard watching everyone walk around where ever they want! Watch them swing, run, walk, hop, play......Then I feel so guilty about being envious of what they get to do, so that doesn't help the situation. I watch everyone just walk around so easily, I see my family go out the door and it only takes a moment, but not for me. Everything is hard and takes so long. Imagine every time you went out of your front door, time it, I bet it only takes a few seconds, its so fast you barley even notice, for me its so hard, I need help, a ramp, ect. So apply this to everything you do during a day and some things I can't even do by myself at all. Then watching my family run and play together, its heartbreaking not to be able to join in. I can only watch them from my chair........

: I am not trying to complain, this journey is about sharing how my life truly is with CMT. Like I said most days I am ok and every single day I am grateful for the beautiful life I have! Now as this new week starts, I am smiling again and trying to stay positive!