Tell us about yourself and your CMT journey?
My name is Cathy Power and I have CMT2A2. For me, this means that my disease is slowly progressing, but things are definitely getting more challenging. I have hand tremors and very weak legs. I began wearing leg braces last December. It’s tough, but, I am a musician and CMT will not stop me from performing. Sometimes pushing myself so hard means that I have had to get injections in my hip, take prescription pain meds, or lay in bed for a day or two to recover. But I pace myself. I have learned to ask for help. I have made adjustments like buying equipment that helps me sit and play. And wearing braces for my weakness (I don’t have a typical foot drop presentation) has made all of this easier. I like showing off my braces and dress in a way that features rather than hides them. Honestly, It makes things better for me and helps others see that I might need a little extra help. I struggle less and don’t feel as shy to say, “Hey, can you help me with this?” Or “I can’t stand for long, is there a seat somewhere for me?” I’m a rock star with rock star parking. You can check out my work at https://cathypowermusic.wordpress.com.
What interests you about attending this year’s HNF Movement is Medicine Summit™ ?
I have a lot of pain. Some of that pain is in my feet and that means I have trouble walking for long periods of time. I really don’t think that much can be done about that and sometimes I find myself needing a wheelchair. Also, my legs hurt. The cramping and pain is something I think most CMT patients experience. However, some of my pain is in my lower back and hip. And while that pain may never be gone, exercise does seem to help a little.
Why did you sign-up for this Movement is Medicine Summit™ ?
The idea of Movement as Medicine really appeals to me. Attending this summit is a self-care treat for myself. In fact, it is what I am getting myself for my birthday. I am currently working on getting stronger. I just started a program that provides personal training to people who have conditions that cause muscle wasting, so I am very eager to learn more about what all I can do to feel better.
What are you hoping to take away from the Movement is Medicine Summit™ ?
I hope I learn something new, get extra motivated, and make some new friends.
great!