September among other things, is Charcot Marie Tooth Awareness month. I have two tabs on the top of this page that can explain CMT and who discovered it. For this year I want to talk about what CMT is to me.
CMT, I have had it all my life and yet it continues to present me with new challenges. I am 55 and I still try to ignore it and on a good day almost get away with it. When I over do it my joints ache and throb with pain. I have learned to adapt, evolved I suppose, in to a creature that is determined to be resilient.
My arms are very weak now. I was trying to strengthen them but it only made things worse. My feet are turning in more and at night the pain from the calf muscles makes it hard to sleep. My body wants to curl in to a ball, it's tempting but I still resist. Stretching all I can within my limitations.
My day is filled with weird zaps and zings in my arms and legs. Evidence of nerves trying to work in spite of CMT. Sometimes I have cramps in my hands so bad I can't straighten them.There is also plenty of numbness. Just yesterday I saw part of my toe nail on the floor and do not know how I hit it hard enough to break it off and never felt a thing. I jammed my toe once and the doctors had an awful time trying to fix it. I kept telling them to pull harder because it didn't hurt they were reluctant but finally listened. I have peripheral neuropathy.That sums it up, the parts of my body that are not numb, hurt.
Progressive is a doom and gloom sort of word but we are all progressing towards an older version of ourselves. I try to stay focused on today keeping tomorrow only in the back of my mind. Progressive for me means continued loss. I am realistic living on the ground floor, having a scooter etc. What can I do today to feed my soul and my mind? How do I get there? Nothing is simple. Planning is a huge part of my life. Difficult for a once spontaneous person.
Frustration is a common partner on this journey. My biggest one right now is that I can not walk on the beach. That has been my fantasy for so many years to just walk on the beach and grow old- progress. I will not let my inabilities define me though and we are working on creative ways to achieve my goal. Even if I could just stand there and get my feet wet I would be happy.
Hope. There is a tremendous amount of research going on and one drug is going to clinical trials! I have often said if I knew I would never get worse than I am, it would change my life. How about taking it a little farther and saying what if I regained muscle use! Do I dare to hope? Anything that would stop progression and possible loss of breathing would be incredible. I choose hope.
I have so many brothers and sisters with CMT. 1 in 2,500 worldwide. I am in a few online support groups and live with an incredibly supportive husband. I am blessed.
This is only one piece of my burden but since it is CMT awareness month we will stop there.
There are three different organizations you can contribute to if you would like to-Muscular Dystrophy Association -MDA, Hereditary Neuropathy Foundation - HNF or Charcot Marie Tooth Association CMTA.
More importantly tell someone about CMT. Thousands of people are not diagnosed and with treatment on the horizon it is critical.
Lord I pray for all of us in pain today. Continue to comfort and guide us. Praying for miracles and soon. I praise you and all that you are. Amen.