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.
A friend of mine shared this Scripture with me a few weeks ago. I have several favorites and may have to add this one to mine.
As a man with Charcot-Marie-Tooth which seems to almost change daily, and not for the better, trusting in God and placing ALL of my cares on Him has been the greatest part of my life.
If you would like to learn more about being a Christian, please visit “Peace With God!”
“For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.” – John 3:16
Today I celebrate the Resurrection of Jesus. He died on a cruel cross on Good Friday and rose from the dead on Easter Sunday for our sins so that we may have eternal life with Him in Heaven.
My Christian faith, the Bible, Jesus Christ, God are the foundations of my life and helps me incredibly with Charcot-Marie-Tooth. I could not handle with the pain, frustrations and aggravations without God’s help all th way.
If you would like to learn more about God’s Plan of Salvation for man, please visit Peace With God.
When I was diagnosed with Charcot-Marie-Tooth, it was in the ‘80’s and I was around 22-years-old. Did I ever have the life sucked out of me!? That moment did it!
As a young man finishing my college degree, the news wasn’t helpful because I had many plans for my life. I was going to find the perfect job in the perfect location and the perfect wife. All of a sudden, these perfect dreams seemed to disappear. The job might come together, but, would a woman want to marry a guy with the physical struggles I would have? My thoughts were not likely.
It was at this point that I began to be depressed. I remember thinking “why me?” “Why can’t I be physically fit like other guys?” “Why can’t something in my life be normal or, at least, not a problem?” I don’t think I ever wished it on someone or would I want to do that. However, I did wish it away more than a few times. I’ve lost count on the times I have done that.
Back in the day, the doctors were not very positive about my future. That was not good. I began feeling like the world was ending and this was it. As I mentioned, I was too young for that to happen. However, the world wasn’t really ending. Yes, the diagnosis was real and the medical world only knew so much about the disease and it sure seemed like it was. But, it wasn’t ending. I have wondered over the years if an emphasis on regular physical exercise, better diet, and nutritional habits would have been more beneficial than telling me what I will not be able to do.
Why? To this day, I can remember what the doctor said I would not be able to do. It was a long list of things. In my opinion, that needed to be shared with me but a long list of positive things I should be able to do should have been shared too. He mentioned that swimming would be good for me but not much else.
Nowadays, I “interview” my doctors. I discuss my overall health and Charcot-Marie-Tooth. I look for someone who is positive and will help me to see the positive in life and my abilities. Unfortunately, I didn’t know about this until I got married (yes, I got married- more in another post). Anyone who has anything to do with my health needs to have the positive attitude of “anything” and “everything” is possible.
Today, I am not able to run. I am able to walk. And, I am able to walk much further than my original doctor of some forty-years ago. I swim, I go places with my wife and dog and we adapt if need be.
Another point I will make is to learn all you can about Charcot-Marie-Tooth. Don’t just take your doctors word or what (s)he says it will do to you. Read and learn. With the internet, that’s a much easier thing to do these days. If it’s too much for you to read and learn about your disease, then have a friend who will help. I had a few girlfriends who helped me to learn more and were an excellent inspiration.
One of the more difficult and frustrating times of my life has been the winter months. It’s cold. It’s hard to get warm. It takes forever to get warm, but not much, or long, to get cold again. I have to admit, it’s annoying.
For me, Charcot-Marie-Tooth (CMT) causes my lower legs and feet and my lower arms and hands to have neuropathy. I noticed many years ago that I had to be careful handling hot cups of coffee and hot plates of food because I didn’t always know at first that they were hot. As for cold, I have noticed that my feet and hands get cold really quick but I do not always know how cold they really are. Maybe others do too. But, with the neuropathy, it causes you to get hot or cold faster.
One of my issues with the cold weather is I have tasks outside which I have to do but they can be dangerous for me. Until a few years ago, I always shoveled my driveway and sidewalks of snow and brushed off our cars. Even when we would have a huge snow of 5 inches or more. To me, it is my responsibility to take care of my property.
Unfortunately, as I grew older, these tasks and the cold weather became more of a challenge and more dangerous. When I lived in a Northern Virginia neighborhood years ago, I was blessed with a neighbor who would frequently “sneak” and shovel our front walk. She and her husband would get outside early and begin the task to my surprise. I returned the favor a few times too. This was a huge blessing for me. Every once in a great while, a neighborhood teenager would stop by and ask to shovel my walk. I paid them well so they would return if it snowed again but to no avail.
I have to admit, being a man there are traits built within me that drives me to take care of my home and family. I have a hard time allowing others to do tasks that I should do. However, when it’s a matter of “safety,” for me and/or others, involved, it becomes a matter of being safe rather than my male ego. That is easier said than done.
A few winters ago now, my wife and I had moved to the house where we will live in retirement. A huge snowstorm of around 3 feet was predicted and it happened. We would have been stuck except that I learned from neighbors about some teenagers wanting to make some extra cash. I hired them and gave them a decent tip. I wanted them to “think of me” the next time it snowed. I didn’t need to be their first stop or a top priority, I just needed the walk and driveway shoveled.
The next few snowstorms, the boys did think about me and made contact. They came by and shoveled the walk and driveway. This went on for a few more snowstorms until they had the nerve to graduate high school and go off to college. Soon after that, I was blessed with friends who came by and surprised me by shoveling me out.
These two incidents allowed me to step back from something I should not do, safe my male ego and heart without anyone else knowing. I have to admit, it felt good about giving the teenagers cash for their Saturday night dates too. I would have loved someone to have done that for me when I was their age. It’s an ego thing.
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.
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.
Hello! I have been wanting to create a website about my life with Charcot-Marie-Tooth for years. The disease is very annoying, to say the least, but, since it is what it is and I cannot change anything, I am making the best of it.
I wish I had had the vision when I was a young boy to begin writing about my experiences. I never really thought about. And, though I knew something was wrong, I wasn’t willing to admit it, have it diagnosed, or even pay attention to the fact that it was possible to have it until I was in my 20’s. Further, I needed to accomplish another goal before I began writing or talking about my health.
To be honest, regardless of what Charcot-Marie-Tooth does to my physical being, I could never have gotten through life without God and His care for me. God spoke to me while I was in college that He would be my strength which I will share about in a post. I will share more about that experience in another post.
My plan is to write about the different things I’ve done to help myself along life’s way. I hope that my tips and stories will help you fight whatever health issues you might have and be the best you possibly can be.
Please read my “About” page on this site. You’ll learn that I am a man sharing about my journey. Please always check with your doctor for their recommendations.
