Tag: COVID-19

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.

COVID-19, CMT, and Me!

“COVID-19”
Photo by Brian McGowan on Unsplash

I hope you are doing well with all the craziness of COVID-19. Before I forget, the Charcot-Marie-Tooth Association (CMTAUSA) has shared this post for us, COVID-19 and CMT. Another post which is from the Hereditary Neuropathy Foundation has created a page with resources and a webinar. Check it out by visiting CMT & COVID-19. There are probably other resources but these two are ones I have found most helpful.

I am not expecting too many issues directly from COVID-19. I have practiced, for various and sundry reasons, social distancing for many years. When I retired, I really relished the thought of sitting in my sunroom or photography studio writing or working on a creative project. Of course, this included walking my dog quite often. More recently, I added cuddling my cat! All of that while my wife works part-time at a local church. Also, I have practiced the basic hygiene stuff everyone is repeating repeatedly and more often than not for all of my life. Nothing new there! And it should be nothing new to anyone except maybe really young children who are still being taught by their parents.

Unfortunately, however, I have started to have some CMT problems which have been prevented until now. I have used a regular Deep Water Aerobics routine for nearly fourteen years to combat nerve pain, stiffness, soreness, and to attempt to slow the progression. During this time of not being permitted to attend my Deep Water Aerobics classes, I am learning how beneficial the classes are and cannot wait until they return.

Water therapy is one of the best exercises you can do. Since I can only walk so far in one day, usually a max of 2.5 miles sometimes more, a water therapy such as Deep Water Aerobics adds the extra benefit of moving my feet, legs, arms, and hands in an exercising way which does not hurt me. Of course, you have to be comfortable in the deep water. However, you are not participating in the class without a life jacket around your waist. I happen to use ankle and wrist devices to help exercise and cause more resistance in the water. One class I took, we had to be able to do the class without equipment but no one ever tested us. However, we had a few sessions which required us to workout without them. Talk about a challenge!

I praise the effects of Deep Water Aerobics because that’s where I started and prefer to do my exercises. There are other classes in Water Therapy which might be better for you. I highly recommend a discussion with your doctor and with someone who instructs water therapy or water aerobics classes before you begin any regiment.

Keep smiling through this and we will get through it.