Sept 23 My CMT Journey continues.....

Walking has always been challenging but it wasn't until the last 15 years that I use a handicap sticker on my car. Even then I tried only using it when it was raining. My family loves it when I drive during Christmas season. Makes parking up close a pleasure. When pulling into the handicap spot, I have had many state that I don't look handicap. I then tell them that I'm blind. They don't say anything just shake their head and walk away. I guess it's OK to drive when your blind but it's not OK to park in a handicap parking place. Joel blessed our family with his future bride, Sara. She has brought along our little princess Zaniya. Both have brought much joy to Joel and to myself. I have a grand daughter who I love so much. When Zaniya and my niece Christine's children asked me about my leg braces, I would tell them they were my “Wonder Woman” shoes and I'm really a super hero. Children are curious and want to know why my hands are bent and how come I can't straighten them. I tell them, “An angel came down from heaven while I was sleeping one night and kissed my hands. It was so powerful that my fingers immediately curled up. Don't worry though as that doesn't happen to every one. Usually when an angel kisses you it just puts a smile on your face. I think this angel was plugged in to long and had to much electricity. I hope he didn't get in trouble.” I try to use my disability as an asset and and make it more humorous and interesting. As long as I'm not in pain or trying to stand on shaky legs I can be creative in sharing whats wrong with me. Instead of saying when I was nine years old I was diagnosed with a rare neuro muscular disease I come up with other stories. One day at a local Veterans Museum, a friend of my sisters saw me walking in with my struggles and wanted to know what happened to me. I told him I got wounded in the war. Than though,t “Oh better not say that here it could sound disrespectful”. Good thing he was hard of hearing because he said, “What?” I replied, “I got hurt jumping out of an airplane”.

A few years back while volunteering at my church I noticed I was having a difficult time walking and standing. My back was always hurting and I found my balance was just non existence. It felt like my legs were going to give out. I volunteered at a church function one weekend and pushed myself physically. By the end of the weekend my body just collapsed and I fell on the floor. A gal behind me picked me up and after resting for awhile I was fine. My sister Patty was and still continues to suffer with severe back pain. I used to be able to walk around the park without any problems but a few years back I found myself having to stop several times and sit. I just couldn't understand what was going on. I went to a neurologist who ran some tests on my back. Did a bone scan which showed I was where I should be at my age. Nothing came back as problematic so he suggested physical therapy. I was showing some weakness on my right hip but the neurologist felt physical therapy would help strengthen it. I did research and tried doing exercises on my own at home. It didn't seem to help so I attended physical therapy for 8 weeks. I wasn't getting my strength back. What is going on? I just didn't understand how my CMT was progressing. 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