Sept 25 My CMT Journey continues....

During one of my exercises, in walking with a cane, my right knee buckled and I crashed hard on the floor. I now fractured my lower back. More rest followed by more in home therapy. My sister Patty is more functional but was having difficulties with walking and back pain. We both researched and visited many orthotic specialists in finding a different leg brace to help us. I wanted to try a new type of leg brace called Phat Brace. They are the Cadillac version of what I wear now. However, it is very expensive, after insurance it was $900.00 out of pocket. So my niece, Christine, surprised my sister and I with a fundraiser garage sale. She raised enough money to cover our expenses. Unfortunately for me the new braces didn't help at all. My legs were getting weaker and nothing was going to give it support. My niece did find an electric mobility scooter at a garage sale and so the money that was for braces went towards the new scooter, repair and a new battery. “If knees get too weak the person no longer can stand reliably and falls become so severe that a cane, canes, a walker or an electric wheelchair or scooter is used for safety and mobility. A person can get to the point where they'd rather use a mobility aid than risk more pain and damage from falling. It is then that mobility aids are accepted and used willingly” (CMT News). I came to the realization that in the last three years of falls, fractures, surgery and physical therapy I am as strong as I'm going to get. MDA doctor confirmed what I thought. He told me to stop all therapy, stay as active as I can, but don't over do it. I already spent three years home bound. I had my praying friends come by and we had “Ellen's church”. We sang, prayed, had communion and a message of hope. What is God's purpose for me? I didn't understand all that was happening and why I couldn't get my strength back. I told my husband one day at dinner, “I don't think I'm going to get better. I think this is it”. My husband responded, “Don't say that I don't know how much more I can do”. He was already doing all the food shopping and cooking. That night I cried myself to sleep. I felt so useless and a burden. It was then that I started the grieving process of loosing my independence and use of my legs in being able to walk functionally. I needed to use the walker from now on. I'm just at a high risk for falls. Patty, walks without the use of any aids like a walker or cane. She shops, cooks, cleans, socializes and helps her husband with work related issues. I know some see Patty and how active she is and compare me to her. I am left at times feeling like a failure in that others think I don't push myself enough and I'm being lazy, or making excuses. If you ask my husband, Doug, how hard I work just to maintain what little muscle I have, he will tell you I  work at it daily. I understand as my loved ones watch me struggle they want me better so it's their way of support.“The severity of symptoms varies greatly among individuals and even among family members with the disease. Progression of symptoms is gradual. Pain can range from mild to severe.” (Charcot-Marie-Tooth Disease Fact Sheet, National Institute of Neourological Dosorders and Stroke) Research has come far over the last 20 years. They are working on eradicating CMT like they did polio. Below is a model of a new drug they are developing and having some success with rats given the cmt gene. But research costs money. Every dollar given helps people like my son and future generations. If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge Pictured below model of research, Chris at garage sale, Paty, Chris and me. Me with my walker