Category: Sports

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.

Getting My Feelings Hurt!

“Contemplation”
Photo by Brooke Winters on Unsplash

I was never, still aren’t, one of those people who get their feelings hurt easily or as some say, “carry their feelings on their shoulders waiting for them to be knocked off!” As a child, I wasn’t quite as thick-skinned as I am now but I wasn’t one those “sensitive” kids either. However, there were, and still are, times when – I get my feelings hurt.

I remember the days of being a young child and how rude other children were. They were often cruel too. I can remember being called names, nothing profane mind you, but still. I remember being laughed at because I could not do most of the P.E. requirements. I ran funny. I walked funny. I couldn’t do pull-ups. I couldn’t do sit-ups. I was always the last one chosen to play on a team’s side. The list could go on. I knew I was different, but, at the same time, I wasn’t sure why. Looking back, I cannot tell you all the things which happened or what was said or done, but it seemed like I was always getting my feelings hurt one way or another. Most of the time, it was something that I could not prevent.

I’m not sure why kids liked to tease me. Sometimes I think it is because I was funny looking or weird but they were too. I just never pointed it out or really paid attention to it. Maybe it was my feet. When I was younger, they started turning and have been doing it ever since!

I remember hoping or thinking that one day when I was older, the teasing, rudeness, and cruelty would stop. Ha! That’s not happened yet. The teasing and annoying behaviors went through college and even my adult years. Fortunately, I learned at an early age to love myself. If I didn’t love me, then nobody else would… and frankly, I really wanted a girl to fall in love with me despite Charcot-Marie-Tooth- but that’s another story for another time. I wasn’t much on hanging out with the guys so I didn’t give that much attention.

As an adult, I find one of the more rude things people like to do is make decisions for me. For instance, they do not invite me to do something because they know I have health issues and do not think I can do it. Well, that’s not for them to decide. A friend would not allow me to mow his yard, saving him time and money, because he was afraid I would fall. I told him it isn’t his fault if I fell and the work is good for me. It helps me to keep moving. Another decided that standing to assist at a funeral was too much for me. That cut deep- really deep. Depending on who it is, I will push myself to do something with someone or for someone because I care about them. Sometimes you have to bear some pain for someone in your life.

For me, my parent’s were a great support. Since I am the oldest, I’m not sure how they knew to tell me they “loved me” often. Somehow, they did. Even on the worst days, when the world would be taunting me, the fact that they loved me often rang in the back of my mind. As an adult, it did too. This fact, I believe, helped me to rise above the others and be more successful in life than if I hadn’t heard that from my parents.

After years of not being asked to do something because someone thinks I cannot do it, rather than asking me if I can or would, being the last to be picked to play on a team, not having much interest in sports because I cannot participate, I have become pretty introverted. I have tried to ignore “being left out” or the “things people do” but it isn’t always easiest.

To me, the challenges of living with Charcot-Marie-Tooth add to the frustrations. There isn’t anything I can do about it so I’ve learned to love and accept myself for what I am. Also, I focus on what I can do instead of what I cannot do. I tend to surround myself with friends who believe in me and will not “stifle” me as so many try to do, intentionally or not. This has helped me to live a happy life.

Of course, getting my feelings hurt is just a part of life. From what I hear, everyone goes through it or has these issues. Learning to get past this obstacle is a challenge but it can be done. I have found focusing on God, the people I love and support me in my challenges and are not obstacles, and, of course, the love of my dog and cat.

Parents love your children and tell them often. Friends of someone with CMT, allow them to be themselves. Help them when they ask or just listen when they need it. Be a friend, not an obstacle!

A Visit to the Great Smoky Mountains!

The Great Smoky Mountains, Tennessee, USA
Photo by Micah Williams on Unsplash

One of my favorites escapes is to visit the Great Smoky Mountains in Tennessee and North Carolina.

I took one of my first really long hikes there and love taking a drive through the mountains looking for landscapes and wildlife, especially bears, to photograph. Of course, be very careful around bears! Know the regulations and law!

What do I like about the Great Smoky Mountains? It’s beauty. Being able to get outdoors and away from all the noise of the city.

Escaping to nature seems to help me incredibly to deal with Charcot-Marie-Tooth. Though hiking is more difficult for me than the average hiker, the trails I can hike are awesome.

There are quite a few things you can do and enjoy at the Smoky’s. To get some ideas, please visit the National Park Service – The Great Smoky Mountains. I will share more about the Smoky’s and other places to visit in upcoming posts.

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.

Early Years With Charcot-Marie-Tooth

Boy Exploring a Tree, Photo by Ksenia Makagonova on Unsplash

When I was a young boy, I did not know that I had the Charcot-Marie-Tooth disease. I was an adventurous and curious kind of kid who never really got into trouble unless you call accidents while exploring my universe trouble.

I loved exploring the dirt hills on my bike at the end of the street which wasn’t far where we lived. There were great trails which lead to these hills and you could do jumps! A few friends were better than me but it was still fun. I loved to make forts in the woods too. I remember one we made next to this huge tree. We had old carpets and blankets spread out to create a floor so it would be our place to hang out. We leaned several good size boards against the tree to create a roof. It was fun.

However, I knew something wasn’t right and, at times, I was embarrassed about it. When it came to those infamous P.E. classes, I wasn’t able to run and jump hurdles like the other kids. I wasn’t able to pull myself up to do pull-ups or even do sit-ups. But, fortunately, what the other kids said, didn’t bother me enough to “scare” me for life or make me want to seek vengeance I just went on with life.

As I grew older, I knew or wondered if something wasn’t right because I was uncoordinated and had no interest in any type of sports. While other boys my age were strong and athletic, I didn’t quite develop as they did. It wasn’t something I focused on though but there were plenty of times of embarrassment.

When I look back at those days, I do not have any horrible memories of any mean or rude things other kids did to me. I’m not sure why I don’t because there were plenty I could remember or that could have really hurt me. I think the fact that I knew my parents loved me, whether I knew it from them saying it frequently or if I thought about it subconsciously, I’d have to say it kept a good positive attitude in me knowing it.

In my humble opinion, whether your child has Charcot-Marie-Tooth or not, you should verbally tell them, “I love you!” every day.