Editor’s note: The following is adapted from a letter Stephanie Hoover wrote to family and friends to ask them to support her in the Louisville Muscle Walk. We thought her characterization of the impact of her disease and her eloquent description of the community she has found within MDA were worth sharing. We hope you agree.
Marley, my 7-year-old daughter, and I both have Charcot Marie Tooth, a neuromuscular disease that causes us muscle spasms, cramps, tremors and more. But a list of symptoms does little to indicate how CMT truly makes an impact on our everyday lives.
After a busy day for me, every muscle in my arms and legs are twitching. There are even times when I don’t do anything and my muscles still spasm or twitch. It can be scary, especially when it happens while I am driving. How are you supposed to safely drive your children home when your calf is cramped up and your lower leg is twitching at the speed of light? Thankfully we’ve never been in an accident.
Did you know your cell phone insurance can drop you? I’ve learned that the hard way. My hands will either cramp in odd, painful positions or spasm randomly causing me to drop my phone and break it. I’ve been through so many phones that I am no longer insurable.
Everything that “normal” people do is so much harder for me to do. I never have any energy. I feel random sensations: hot, cold, wet, burning, numbness and painful tingling that doesn’t end for hours. That’s the one that makes me cry. I’ve been prescribed a muscle relaxer, but it doesn’t really even touch my pain. If they took me off of it I would be much worse off but if my dosage is increased I’d be a zombie, and as a mom I don’t get that option. I have to show Marley how to be strong and not be defeated by her diagnosis.
As for Marley, right now she goes to physical therapy once a week and must sleep in leg splints. She can’t run as fast as other kids because she can’t lift her feet normally, but she doesn’t realize it yet. She’s also so clumsy. We both have bad balance and have a hard time understanding where are bodies are in space and in relation to other people or things. Marley also has trouble jumping, skipping and doing other normal physical stuff kids her age are doing. She already has the twitches and a few nerve issues, but thankfully we do not think she is progressing. She has also been prescribed a muscle relaxer to sleep, but luckily when she wears her night splints she doesn’t take it.
Even through all of this we consider ourselves lucky because we have the support of the MDA. MDA has given Marley and me a tribe. Because of MDA, Marley gets the opportunity to go to summer camp each year. She loves camp and can’t wait to go. I hear about it all year long — more than any other activity she does. At camp she has friends, children who are like her, who understand some of her struggles and who welcome her. And I know with MDA I have a support system. I have other families and parents who understand what we go through and who I can lean on. And it isn’t just the support. MDA is doing so much to work on finding treatments and cures for all types of neuromuscular diseases. The research grants they are funding could be what one day ends the challenges and pains people like Marley and I go through.
MDA can’t do it alone, though. They need the support generous donors to help those of us with muscle disease live longer and grow stronger. One way to get involved is through MDA’s Muscle Walk. You can either donate to a team or form your own. You generosity helps me get through each day, and your support for Muscle Walk means so much.
Learn more about MDA Muscle Walk and register to participate today!