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, March 10, 2015


And Jade caught it all on camera! I am beyond proud of myself, they said it wouldn't happened, but after almost a year of pushing myself, I did it! I totally forgotten how tall I was, Brandon too!

Thursday, February 19, 2015


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!

Thursday, January 22, 2015

Exciting Update!

It has been awhile since I have updated my blog and I am so sorry about that, with the holidays, my birthday and sickness going around I haven't updated my blog as often as I normally do. But I am back now to update my progress! Everything has been going great! Since I have accomplished my goal on the stander, I have progressed to standing while holding on to someone! Its a very big accomplishment and it makes me feel so good inside to stand next to my husband, family and friends even if it is just for a moment!

Saturday, November 15, 2014


Today I accomplished an amazing goal! I was finally able to stand in the stander with my afo (Ankle Foot Orthosis) leg braces on. I can not even begin to express what this felt like, what this meant to me! I have worked so hard and there were many times where I felt like I would never get to this point and today I did it! I stood in the stander, with no straps on, for 15 minutes! There are truly no words that I can say/type right now that can express this moment, so I will let the picture/act speak for itself!!!!!

Friday, November 7, 2014

Hot Tub Physical Therapy

After physical therapy I usually have to go into the hot tub to deal with the pain that physical therapy caused and relax my muscles. But there a many times that I go in the hot tub especially for physical therapy! I do a stretch routine and also in the hot tub I have the ability to move my legs freely! About 2 years ago I was given this hot tubby my a dear friend, she hoped it would help me with my CMT. Well know one could have known that, that amazing gesture would change everything for me! After a year of being able to go in the hot tub and move my legs freely whenever I want, that is when we started seeing a difference, I could crawl around and had more control over my upper legs and that is really what made my now current journey and goal even possible! So thanks to the amazing physical therapy and time I spend in the hot tub now I am able to do so much more! Last night when I was in the hot tub, after Brandon helped me doing my normal stretch routine, I wanted to try something. I sat in the hot tub and one leg at a time, I raised my knee up so the rest of my lower leg would follow. As I was doing this, my husband tried doing it with his leg, it was nothing to him, but he could see how much I was struggling with just this basic movement that people take for granted. I was able to lift my knee 10 times on each leg. It was exhausting and caused me a lot of pain but I was very proud of myself! This is a really big part of achieving my goal! The work of lifting the rest of my lower leg, knee and under, having some control over that so one day I could lift them to walk.

Sunday, October 26, 2014

Still working on the last angle!

This will be a very short post since I am still working on the final angle. You can read my last post to find out more about the final angle! I am up to 10 minutes at this angle! My goal for every angle is 20 minutes with manageable pain. Right now I am at 10 minutes with, on a pain scale from 1-10, a 7. I want to say a big Thank You to my best friend Misty who has been coming over a few times a week to do physical therapy with me, like she did on this day!