Charcot-Marie-Tooth, COVID-19, and Frustrations

“Coronavirus!”
Photo by Glen Carrie on Unsplash

Well, if I were a betting man, I would be richer today than I was a year ago. Why do I say all that? Somehow, I knew COVID-19 was going to be an issue with its lockdown nonsense at least into the election season. Most people seriously doubted me. As more stringent lockdowns began in some parts of the country, my frustrations continue as the “lockdowns” have harmed more people than we really know.

While I understand the need to be careful because of a virus. I’m not seeing where any pre-cautions are any different than those I was taught as a very young boy probably soon after birth! My mother taught me not to put my hands in or on my mouth, do not pick my nose but use a tissue, do not cough into my right hand since you might shake someone’s hand, wash your hands frequently and often (I know, right?!), stay away from people who are coughing or have a cold. Common sense health care, right? Right.

My first and foremost frustration is how diligently I worked for many years, probably close to twenty, to help me feel better and stay ahead of Charcot-Marie-Tooth (CMT). It’s been proven that if you stay active, you can slow the effects of CMT, though not truly stop it or cure you. I have been careful not to be lazy or take the easy way out with many aspects of life so I would stay active. When the governor of Virginia closed everything in the wake of COVID-19, it really upset me because he was messing with my health- along with many others.

Back in 2006, while in physical therapy sessions I learned quite a few exercises to help me with some pain. At the same time, I had started taking Deep Water Aerobics (DWA) classes. It wasn’t long before I connected the exercises in the physical therapy to the exercises in DWA and realized it could be very beneficial to continue taking the DWA classes. After that, I made sure not to miss any classes as it was more fun than going to physical therapy. In the time prior to the COVID shutdowns of March 2020, I never missed more than a few classes at a time. Now, it’s been about a year.

Thankfully, during the summer of 2020, I was able to use a friend’s pool to workout. Thanks to my brilliant Deep Water Aerobics Instructors who provided excellent instruction prior to COVID and provided me an instruction list to a workout routine. Also, I took up riding my bicycle every day along with walking my dog. This routine helped me through to the fall season when it finally got to cold to swim or ride my bike.

Since it doesn’t seem like my DWA classes at the local fitness center will ever start up again, I inquired about personal training sessions. However, the classes would be very expensive, possibly unreliable with the whims of the politicians these days, and there would be no use of the locker room to change. Not good. I could change in the hallway bathroom but I am not too interested in sharing my naked self with the world as I just knew the door would open at an inopportune time. The other choice was to go home in a wet bathing suit. For me, CMT affects my nerves which happens to NOT mix well with cold water and winter weather. A recipe for nerve issues and becoming ill. So it didn’t work out.

Fortunately for me, I have learned to pay quite a bit of attention to my body and what I do to make it feel better or worse. I learned that continuing to have my massage therapy and chiropractor sessions, but spaced at least a week apart, and scheduling every three weeks would mean minimal discomfort.

The blessing in all of this frustration is coming, I believe. My massage therapist is always on the lookout or learning new ways to help people feel better. Not too long after my frustrations of no Deep Water Workouts began, she introduced me to a new type of therapy called “Bemer.” Since it is what I call holistic, meaning no medications involved, I was willing to try it.

My journey into using the Bemer product to help me feel better with guidance from my massage therapist has begun. I will share updates as I can.

Please remember, my experiences are my own and cannot be guaranteed to provide you with the same results. CMT affects each person differently. Discuss any exercise routines or products with your doctor.

Happy New Year!

(C) www.storyblocks.com, Used by Permission

I love the new year. To me, it gives a chance to evaluate what went right and what went wrong in the last year health-wise, that is. When I do this, it gives me the opportunity to realize where I can improve myself this next year.

For someone with Charcot-Marie-Tooth, setting health goals might seem a little silly or maybe even stupid. No, not at all. I can have goals to try to reach, but, I need to be wise with what goals I set. For example, in 2017, I walked 312 miles. Of course, this was with the encouragement of my dog! I set a goal to walk further than that. I think I set it to be around 350 miles. Surprisingly, I made it!

The setting of a health goal, made me get off my behind and go for a walk! Instead of being totally lazy, I walked. As I mentioned, it helped quite a bit that my dog wanted to go out for a walk too. He always reminded me to go for a walk and not to forget!

Another goal I realized in 2018 was to take advantage of the Deep Water Aerobics classes on a regular basis. The classes are offered 5-days a week. Since I tend to “burn out” on repetitive activities like taking the class every single day but Sunday, I planned to take the class every Tuesday and Thursday when I am in town. Maybe on Mondays when I might miss one of those days. I succeeded in attending my classes and will plan it again in 2019.

Health goals, as I call them, for someone having Charcot-Marie-Tooth needs to be reasonable. For me to decide in 2019 to walk 500 miles is unreasonable. It is 150 miles over what I did in 2018. I might aim for 375. An easy way for me to think about it is a mile day and a little more here and there. However, if I aim too high and get too ambitious, I could hurt myself and get discouraged with not making my goal. Too low and I might feel like I didn’t accomplish anything.

An important aspect to keep in mind, is if you miss a day or two, don’t stress about it, just pick right up and get going again. For me, it took many years to reach the about to walk very far- it did not happen overnight.

Using an app on your Smartphone to track miles walked and any other exercise is really a great way to track your success.

As always, talk to your doctor about health goals and any, and all, exercise routines. Each Charcot-Marie-Tooth patient can have different symptom and situations. Your doctor will know what’s best for you.