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.

Saturday, February 28, 2015

My New Hooping Journey!


Click the link above to go to the video!







Posted by at No comments:

Thursday, February 19, 2015

Cleaning!!!!??

So I always get a shocked looks when I tell people that when I lost the ability to walk one of the hardest things was not being able to truly clean my house. I loved giving my family a comfortable environment to live in, I wasn't OCD or anything but I took pride in my home. So over the years I slowly started figuring out what I could and could not do around my home. It was honestly HELL, not being able to do what I did every day of my life, not being able to provide for my family in the way that I did. So now with my physical therapy and all of the changes I have been making over the past year, I have been able to do more and more around my home. So when I clean my house, mentally it is so wonderful and it makes me so happy but it physically takes a major toll. For example: yesterday I cleaned the kitchen from top to bottom. I was so happy and so proud of myself, it was amazing! But about 2 hours into it, cleaning through my pain, my hands began to shake and I was losing some control of my arms, this usually happens if I am really pushing my body, so then I have to make the choice to stop or continue, well I choose to finish the kitchen. It looked great!!! I was so happy inside! But then the night was terrible, the pain in my arms was indescribable, Brandon just held me, he gave me my medicine and watched as I lost control of my arms and was in a lot of pain, he got me through it. Then the next morning I was so exhausted, my body was done. So this is the battle I have been having for many years, I do the physical stuff that brings me joy but it always comes with a price, no matter how much or little I physically do. But its OK, I am OK! I am OK because I am proud of what I accomplished no matter what happens after. I worked really hard, pushed through the pain, knew what the night and next day would be BUT I still did what I set out to do, what I wanted to do! I am so proud that in one day I cleaned the whole kitchen and I haven't been able to do that in over 4 years!
Posted by at No comments:
Subscribe to: Posts (Atom)