Tag: Muscular Dystrophy

Charcot-Marie-Tooth and Christmas

“Merry Christmas!”
Photo by Brett Sayles from Pexels

What do Christmas and Charcot-Marie-Tooth (CMT) have in common? Not much actually. However, the stress of the holidays, and the days leading up to it, can make you so tired you’ll want to sleep through it.

My brother used to work some long hours during the Christmas Season to make sure his customers had everything they wanted and more. It was commendable of him and his customers loved him. However, what was not known or seen was how much it all worn him out.

Unfortunately, for me and the rest of the family, he would be too tired to celebrate Christmas with us. He would, invariably every Thanksgiving and Christmas, sleep through the day. He had CMT too. I believe that it caused him to be very tired so he needed a lot of rest when he could get it.

Christmas comes but once a year. We never know what the future will hold. Family and friends will not always be around. If you have elderly parents, they may not be around next Christmas. Not to be gloom and doom, but something to think about. We should spend the time with those we love now, not put it off.

Why not get some extra rest before Christmas Day? Maybe go to bed early? Have a friend help you with the last-minute details for Christmas? Would family and friends be willing to celebrate Christmas later in the day so you can join them? Those are a few ideas to help you enjoy the day and your friends and family to enjoy YOU.

Charcot-Marie-Tooth: Why I Don’t Like Office Christmas Parties… and Most Others

“An Office Christmas Party!”
Photo by Eugene Zhyvchik on Unsplash

It’s not that I am a Scrooge or an antisocial curmudgeon that wants everybody never to party again. Or that there should never be office parties. Well, maybe as an introvert, I am a bit anti-social but I think that comes along with my personality.

When I was working in an office setting, I kept my health issues to myself. The reasons for that will be shared in another post. However, doing so caused me to be wary about many known factors I have with Charcot-Marie-Tooth (CMT) which can be so embarrassing that I prefer to avoid any situations or events which could cause them to be displayed.

What factors? These:

The first one is my inability to ALWAYS control what my feet will do. As you might know too, I can be walking when all of a sudden I trip over nothing. Yes, nothing. There is nothing on the ground. As far as I can tell the ground is level. However, I have tripped on nothing repeatedly. It’s usually pretty funny to the observer when I am doing my best effort to recover without falling down on the ground. I can just see myself with a full plate of food, or two, finding a place without looking for it to trip and throw my food across the room. It would only be funny if the food fell on my least favorite co-worker or maybe the annoying boss, but I didn’t say that.

The second one is my inability to ALWAYS control my hands. While most of the time, I don’t have much trouble with them, there are moments when I drop things. These moments seem to be increasing as time goes forward. I don’t like being embarrassed by doing some perceived as stupid, no one does. So trying to balance a plate of food while selecting what I want to eat, trying not to drop the utensil used to get the food to my plate, and walking forward without stumbling is not on my list for a fun activity.

The third one is the inability to balance my plate of food, put food on it, and talk to someone else while doing it all. Crazy sounding isn’t it? I have never understood those people at potluck luncheons or social events who can talk to everyone about everything while simultaneously placing food on a plate without dropping one little bit. I would have food everywhere with maybe a little on my plate.

My guess is the deterioration of the nervous system from CMT is the culprit behind my dislike of these social events. It is something I can’t help nor is there much I can do about it. At work, I would do whatever I could to avoid the event including taking the day off or offering to run the office while the rest enjoyed their time. That was always my favorite thing to do. However, I have yet to find a “fix” to this problem. Avoiding them isn’t always the best answer because I think it offends people but that’s really the best I can do.

I will consider attending a social event with pot luck luncheon, or whatever they are called these days, with my wife. She is good about helping me with carrying my plate and drink. She seems to have learned to manage the fine line of helping but not embarrassing me. Though, to be honest, I’m grateful for her help. She isn’t doing anything as embarrassing as I would be by tripping and throwing food all over the place. My luck, it’d be on someone I didn’t like to start with.

Charcot-Marie-Tooth: My Journey to using Arizona Braces

“Working With the Doctor”
Photo by Ryan Snaadt on Unsplash

This post is intended to be the first of many about my use of braces and hiking boots to enable me to continue walking. It’s been a great journey, but, with some challenges. I hope that you will learn something helpful by my sharing these experiences. As always, speak with your doctor for specific medical advice.

The year was late 1999. The pain and issues with Charcot-Marie-Tooth (CMT) were really starting to be, well, very painful and challenging. Thankfully, I have a fairly positive attitude which was really helping me at this point. However, with the new challenges to walking, I needed some kind of assistance.

My wife and I had decided on a family doctor which I later learned was good about thinking “outside the box” for my care. She knew a doctor who made braces for people in many situations so I was referred to see her.

My appointment went well. It was the usual battery of tests to see how I walk, what seems to be wrong with my feet, and how she can help. Obviously, it’s CMT. However, as you may know, it affects everyone differently, even within the same family. For me, I had the blessing of having the most severe case. So, I didn’t have any family members to ask questions and went on my own way to learn how to help myself.

The Orthopedic doctor took a cast of my feet and calves from just below the knees down. I sat a few minutes, or less, while the casting material set. Once dry, she marked out the pressure points of my feet onto the cast. WOW! Well, with deformed feet, there are plenty of places to mark. Once she finished, a small saw machine was used to cut the mold. That was a weird experience as it grabbed more than a few leg hairs, that I have just spent all of my life growing, as it went up and down my leg. It wasn’t painful, just tingly weird. It did set my nerves off because of the constant vibration but once it settled, I was good.

I waited about two weeks for the braces to arrive and they finally did. I went to the orthopedics office to get them and I’ll admit that I was a bit discouraged about having to get these braces. Yes, I knew they would help me to walk and hopefully reduce the energy it takes for me to do it. However, it’s not how anyone would want to spend life.

The braces fit great. All I had to do was put them on and put the leather straps across my leg through a metal loop on the other side and tighten. Easy enough, yes. But, hardly the last step in this journey. Learning to walk again. Learning to drive again. Learning to just plain ol’ live again would be the new life for me… after I bought more than a few walking shoes a size larger than I normally would wear.

This post continues at: Charcot-Marie-Tooth: My Journey to using Arizona Braces.

Happy Easter!

(C) Isaiah Jacobs

While we may be social distancing, it doesn’t mean we can’t call those we love and celebrate Easter by phone. Or, maybe send an email to share your love with your friends and family. If you are tech-savvy, you can “Zoom” together for a family gathering.

Today, Christians celebrate Easter as the day Jesus rose from the grave. Those who accept Him and Believe in Him will spend eternity with Him. An incredibly awesome promise.

A great website to learn more about become a Christian is Peace With God!

It’s MY Decision… Ask Me First!

“Ask Me First!”
Photo by Brooke Cagle on Unsplash

I think this might be an issue which most people with a disability, mental, or physical disability might go through. Frankly, I find it insulting and annoying! It seems to hurt me more than the pain I go through with Charcot-Marie-Tooth (CMT). And, when I find a friend who does this to me more than a few times, I have to quit hanging out with them because they are not a friend… in my book that is! The friend becomes an obstacle to what I am trying to accomplish!

What am I talking about? While I know CMT prevents me from participating in some of life’s events and adventures, a major pet peeve of mine is when someone decides for me, without asking me, that I cannot do something! So they don’t invite me. Or, they don’t ask me. Before I forget, my wife is excluded from these comments. She knows and can or has made decisions and I’m fine with that. She tends to tell people to ask me!

Several years ago, maybe even a few decades ago, after working through the diagnosis of CMT, I decided to keep a positive outlook in life, find the “good in life” every day, always finding the positive in new pain or health issues, and to do my absolute best in things so maybe I could prolong the onset of more problems. I have to admit, sometimes because of the person’s relationship to me, I will push myself to do or participate in something which can, and often does cause me quite a bit of pain. It’s because I want to do it with them or hang out with them or it means more to me to do this than to avoid suffering the pain. I remember one time I did something for someone and suffered pain and exhaustion the next day. However, I was very happy and pleased to have participated in the event.

Several months ago, a man had to orchestrate the funeral for another man. Out of respect, and in my heart, I wanted to participate in it because I thought so highly of the man. Well, I wasn’t asked. Later, I found out that it was because he knew it would be too much for me- you know, the pain. That hurt. And, that’s the pet peeve that I despise the most. I think it took me several months to get over it.

Ask me. Do not assume. Do not make decisions for disabled people unless you truly absolutely know the answer and know you will not offend them by making the decision. Or, they have given you permission to do that.

Happy Easter!

“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.

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.

Hello!

Boy Writing Notes

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.