Charcot-Marie-Tooth: Baseball Caps

“Man Wearing a Baseball Cap”
Photo by Alano Oliveira on Unsplash

I think baseball caps are one of the greatest inventions! If you have trouble getting comfortable from irritating nerves and keeping warm during cooler or cold weather, you might learn to love baseball caps too.

As you may know, Charcot-Marie-Tooth (CMT), as well as neuropathy and other diseases can make colder weather almost impossible to be comfortable. For me, when I get cold, my nerves begin to go, what I like to call, haywire. It often feels like I am starting to get cold. However, it is a nerve cold feeling rather than actually cold. The problem happens in warm weather too when I have been in air conditioning too long. Or, when I walk down the grocery refrigeration aisle. I have to completely stay away from those huge refrigeration units such as those at Costco. Sitting in front of an air-conditioning vent or wall unit will cause problems too.

Years ago now, I was dealing with my body feeling very uncomfortable all the time in the winter months. From a physical standpoint, there wasn’t much I could do about it as it’s a symptom of CMT. I found that I could wear a lightweight T-shirt and shorts around the house to ease the clothing discomfort but definitely not outside in winter. When I went out, I wore the typical shirt and khakis, but I needed something else.

At first, I tried wearing a knit hat but it turned to be itchy and hot. Too much for my comfort. Also, it felt odd wearing a knit hat indoors. And, hat head was horrible, especially since I tend to allow my hair to grow long in the colder months. It would stick straight up, which was embarrassing in those moments when I would want to take it off inside a building.

Not long after, I began wearing baseball caps. I quickly learned that the baseball cap kept my head warm, kept cool breezes off my head, and settled my nerves down too. I began a journey of being comfortable when going outside in the cold weather. It helped with the indoor chills too.

However, a few problems arise from wearing baseball hats especially indoors. I hadn’t given much thought to the fact that wearing baseball caps indoors is against proper manners. A few elderly people let me know that it was rude. Since I am not one to be rude, nor to insult others, this bothered me. However, there became a choice I had to make, either I wore the hats when I went out, inside and outside as needed, or I quit socializing and going out to places where it could be a problem. I determined that it was best for me to explain to those elderly people close to me why I have the need to wear the baseball caps. That never really settled the problem for some of them but I wanted to do it to be polite.

Another annoyance with baseball caps is they smush my hair! There are times when I can take off the hat and be comfortable. However, the most annoying problem with them is “hat-head!” So, I don’t look like someone who just crawled out of hibernation, I try to fluff my hair, get my wife to look at it, making myself somewhat presentable.

Today, I wear baseball hats, inside and outside, from the first beginning of cooler weather until it gets too hot and uncomfortable. I have noticed when I am at home, I can be more comfortable wearing a baseball hat.

Buy baseball caps which represent YOU. For me, when I wear something, it needs to represent me. So, baseball caps that have stupid or rude quotes or sayings on them, do not work for me. I won’t wear something that says “I’m with Stupid!” or “Stupid is with me” or anything profane or vulgar. Not only is that not my style, what if I happen to be out, need a cap and the only one handy has the quote, “I’m with Stupid” and I’m with my wife. Never would I say that nor imply it so why own it. Also, I’m not a walking billboard for some company so I steer clear of those unless its a hobby or a clothing label I like to wear that has a clean-styled baseball hat.

A collection of baseball caps. Over the years, I have managed to collect hundreds of baseball caps. Some of them are plain which I keep handy for those days when I am walking my dog or doing some household chore which could get the hat messed up. Those hats are ones that have been given to me at some event or something. A buddy got a free cap at some computer event he attended.

Most of my baseball hat collection consists of hats from places I have been, the Great Smoky Mountains, Shenandoah National Park, Iceland, Alaska, Africa, and the list goes on. I have an interest in railroading and its history, so I have a few hats with railroading logos.

I am passionate about God, dogs, and cats. My hat collection representing my faith in God is a bit limited right now. This is mostly because I am very picky about design and quotes of the Christian faith. I look for something very creative which has a quote I can support or believe without question. When I was younger, some men wore Christian hats which were the nerdiest geeky designs with awful quotes. To me, there were an awful representation of a awesome God. I look for something powerful.

If you know me or were to meet me, it would become quite evident that I have a strong passion for dogs and cats. I had a dog for nearly twelve years that helped me more than I can explain in this post with my health problems. He became a best friend. I have learned to love cats too, and to let them love me when they feel like it. I have a few hats with the quotes, “Woof” and “Meow” which I proudly wear.

I stay away from hats with quotes for causes or politics. I typically don’t wear hats with quotes or logos or designs on them which represent a cause or anything political. I am not interested in chatting with someone I don’t know about my views and thoughts on a particular cause or issue. Nor do I care to bring attention to myself. Why? I am doing my best to walk to wherever I am going and get done whatever I’ve set out to do. I cannot stand in one place for very long without some pain or discomfort. I don’t care to do that and bring it on myself. If I want to express my thoughts on a cause or issue, there are other places to do it which may reach a wider audience.

Colors… I used to be very interested in wearing what was in style and making all the colors match or at least not be too awful to look at. For those occasions when I want to be sure I look presentable, I have a few hats in colors that will match something I’d wear to a social event or church. Today, I’m colorful, love everything as colorful as possible, so I’m not quite as picky about which I wear.

To mesh or not has become the first question when purchasing a hat. Mesh? It’s the plastic backing used to make the back of a baseball cap. Many hats are made this way, but, there are some with a cloth backing. I tend to like the cloth ones better because they don’t make me look like Elmer Fudd or someone with a huge forehead that I am trying to cover up with a hat.

Cold? Trying to just be comfortable from all the nerve issues, try baseball caps.

Charcot-Marie-Tooth: ‘Tis the Season to Slip and Fall…

“Icy Sidewalk”
Photo by Jackie at Flickr Creative Commons

Oh, ice. It is a horrible substance which can cause serious injury to our bodies without our even trying. The first “Winter Weather Advisory” of the season appeared in the forecast a few weeks ago. This alerted me to cancel my evening plans and anything the next day – unless it’s something I can wait and see what the weather really does.

Having Charcot-Marie-Tooth (CMT) allows me to have adventures beyond my wildest imagination or dreams. Walking in snow, or attempting to do so on icy surfaces, creates quite a bit of challenges for me. Also, it is a season in which I practice patience hoping to grow in that trait more by spring.

If you find yourself in an icy situation, there is a trick that learned which I hope will help you too. Also, there are a few important considerations to remember.

Your feet are cold whether you know it or not. This is a thought which I drudge up every season when the cold weather settles in. It’s not intended to be negative but to remind myself to pay attention. Neuropathy can be tricky. Often, I find myself busying about my life without regard to how cold my feet might be. When, in reality and some circumstances, my feet are cold. Now, this is a different type of cold. It’s called nerve cold. Be sure to bundle up for the weather. By that, I mean you should determine what you should wear to stay warm paying attention to the weather.

Walking on ice isn’t something that can easily be done. For me, my feet move in a manner that makes slippery surfaces much more dangerous than for others. When approaching an area which is icy or could be slippery, I stop walking. Keep in mind, I tend to look ahead when walking to keep from ending up in these situations. Sometimes, it doesn’t work. If there’s no easy way to get around it, I focus on myself trying to make sure I’m not feeling rushed, stressed or anxious which could cause me to do something stupid or to fall.

Once I have assessed myself and I am ready to move, I began counting. Yes, counting. 1, 2, 3, 4… When I feel like I am ready to move, I take a step restarting my count at one. As I step, each step with a different foot is counted. I continue counting until I have gotten past the icy or difficult spot. Also, I focus on the counting. Do not allow your mind to wander or be distracted. If you focus on counting each step, it should allow you to safely get across the ice. This trick works with walking on water too.

Remember to breathe as you take your steps and walk through the icy area. It doesn’t do any good to hold your breath while attempting to walk over the ice. I found myself more than a few times holding my breathe while doing this- that’s typical for someone exercising or trying something new like this.

If you make it across the ice without falling, be sure to congratulate yourself! Sound silly? No, it really isn’t. I have learned that when I congratulate myself for even the smallest accomplishment, it is encouraging in the long run of life.

Patience? When I mention about how difficult it is for me to walk on ice and snow, it is usually because I am embarrassed about my lack of ability to do so. It often feels like a circus show that I didn’t intend to do. Invariably, someone will say that it is a challenge for EVERYONE to walk in it. I laugh to myself and think, should I share about my feet being crippled and how they move funny? Or, should I let it go and work on my patience in dealing with others? I usually let it go since there usually isn’t any advantage to sharing. And, they wouldn’t understand. By spring you’d think I’d be the most patient man on the planet. Don’t count on it.

Charcot-Marie-Tooth: Happy Autumn

(C) 2022, Isaiah Jacobs

The first day of Autumn used to be one of my least favorite days of the year. It signals the coming of cooler weather followed by the really cold weather of winter. I dislike the cooler weather as it irritates Charcot-Marie-Tooth (CMT) which can cause me to be very uncomfortable. Also, it is often the time of year when I learn how much CMT has progressed over the past several months.

However, some of that seems to have changed. I noticed several years ago when I started participating in regular exercising, i.e., walking my dog, and deep water aerobics, some of my seasonal discomforts disappeared. Or, they aren’t so bad. Unfortunately, I still get cold legs and feet due to neuropathy. Even that isn’t as bad as it was.

Another factor is that I have moved to the countryside where nature is incredibly beautiful throughout the year. I don’t have to go very far to see its beauty and splendor. I think that has become a distraction for me so I don’t notice the discomfort and painful issues as much as I did before.

Also, the power of positive thinking is an amazing tool. Since there really isn’t much I can do, besides medications, to relieve myself from CMT’s discomfort, I focus on what I can enjoy in my life.

The Autumn season begins at 9:03 p.m. I pray you will have a blessed season. Get out as much as you can and enjoy natures changing beauty.