Fighting Against CMT (Charcot–Marie–Tooth disease) AKA:Hereditary Motor and Sensory Neuropathy: November 2014

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, November 15, 2014

FINALLY STANDING IN STANDER!

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.