My new leg braces (AFOs) and sleeves that secure them to my legs. These help reduce fatigue.
Thanks in advance for supporting me!
I am participating in this Walk 4 CMT for two reasons. First, to bring awareness to CMT which is more common than MS multiple sclerosis and to share a little about my journey.
Second, I am participating in the Cycle 4 CMT event to raise money for the Charcot-Marie-Tooth Association (CMTA). The CMTA is a 501c3 non-profit working with world-class partners to advance treatment-oriented research through STAR (Strategy to Accelerate Research).
To people with CMT, STAR research for a cure means regaining feeling in the extremities, walking without tripping, buttoning shirts, and easily picking up change off a flat surface. STAR is synonymous with stopping the progression of CMT and living a life without limitations.
I have struggled to understand how this disease has affected my life. It progresses slowly and differently in each person. I inherited this disease from my Dad. I now understand that the deep level of fatigue that I have experienced is due to the progression in which the nerves stop communicating to the muscles and the muscles atrophy and the lower legs become weaker which require more energy to simply stand. I am no longer able to carry a box up stairs as I must hold on to the rail to prevent losing my balance and falling. There are a number of "new normals" in my life. Balancing the emotional and mental well-being with these new discoveries has been vital.
Thank you in advance for your generosity and for reading about my journey.
Stay Connected