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, August 12, 2014

CAN I DO IT? CAN I WALK???

Once you have read my previous 3 blog post and are up to date on my story, I will begin to let you know what this blog is really all about........
It has been over 3 and half years since I have been able to walk. My doctors said there was a 10% chance of me walking again but really didn't give me much hope, later on in my story you'll read that I was about to get KAFO's (leg braces) but the doctors only said they were giving them to me to help me be able to stand  but why stop there is what I could not stop thinking. My dad who has CMT wasn't able to walk for 5 years and then he found happiness and a new drive he started being able to take a few steps (that is all he can do). So he could do it and about this 10%...well who says I can't be in that group!!?? You always see on TV these miracle stories of people who were told they would never be able to walk again and then they proved the world wrong! So after years of living with doubt and in a cloud of darkness, slowly over time...my fire came back, my joy and happiness! I started making changes over the past year all thanks to somethings that changed, if you read the previous blog about the hot-tub.but then you will know, well when this warm water came into my life, I was able to start moving my legs all the time and Brandon and I started a stretching routine for me that I would do a few times a week in the hot tub, so now after almost a year, I started noticing that I had much more control of my upper legs. So I started learning how to drive again and on standing but I could not stand by myself and crawling. So when I found out I wasn't able to get the KAFO's because it couldn't be covered by my insurance, well I made a choice after I realized that I wouldn't get them...I could either choose to give up and wait for them to be covered or I could make the decision to SCREW THEM AND SCREW EVERYONE WHO HAS TOLD ME I CAN'T AND JUST TRY ANYWAYS!!!!! So that is what this blog will be about, my journey, my progress and just trying!!!! I figure, I can't walk any less, lol so there is nothing to lose! So I am just going to try!!!!!!! Read about my plan on my next blog post!
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)