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.
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.
Thanksgiving is a great day to reflect on why we are thankful. Actually, we should be thankful every day for all the blessings we have been given.
As a man with Charcot-Marie-Tooth (CMT), I have found myself paying more attention to the disease I fight daily than being thankful for what I have been blessed with. Which isn’t good for me to do. There is more to me and in my life than the constant battle with CMT.
With that in mind, I started many years ago trying to focus on what I have to be thankful for and concentrating on that. Before I was married, God blessed me with a few great friends, a girlfriend who genuinely cared about me, a church family, a condominium to live in, a career, and a safe car to get me to and from work and wherever else I needed to go.
I met a beautiful lady who loved me and I loved her so we made it official by getting married. God has blessed us throughout the years recently celebrating twenty-five years of marriage. She has been a tremendous help to me as I go through the “fun” of CMT. God has shown me the blessing of enjoying His Creation through hikes on nature trails, seeing the beauty of sunrises and sunsets, and working in my wildlife garden. I have been blessed to see the unconditional love of my dogs and cats throughout the years too.
Blessings and reasons to be thankful aren’t always “things.” Though there isn’t anything wrong with being thankful for those, it can be something as simple as seeing a beautiful bird or flower or hearing your favorite song on the radio.
Developing a “thankful” mindset helps me as I go through the many challenges of CMT. This post points out a few ways I practice thankfulness throughout my life.
I have to admit, once the doctor “officially” diagnosed me with Charcot-Marie-Tooth (CMT), I remember being very discouraged and unhappy with the news but I do not remember being depressed. However, it is possible that I became depressed and did not realize it at the time.
I know one of the things that saved me from depression was my relationship with God. He had other plans for me and I would learn those later. However, this doesn’t mean that Christians do not get depressed, because we do. We are humans too. As time goes on, I notice that God had His Hand over me and was directing my paths toward His Plans for me.
As the days went on, some thirty-plus years ago, I remember that I did not focus on what was wrong with me. Yes, there ARE issues with having CMT and many problems which will need to be addressed over the years. However, the focus wasn’t a “Woe is ME!” attitude. I knew what the doctors had said but I decided to continue ignoring the disease since there was no cure.
With this, my relationship with God was directing my paths. At this point, I had a bit of a bad attitude and some negative thinking. As I will share in future posts, there are ways to get away from that mindset.
If you are battling depression caused by CMT or anything else for that matter, I recommend talking to God about it. Also, there is nothing wrong with seeking the help of mental health professionals. I would look for one who professes to be a Christian as they will tend to guide you along with the Christian values or virtues. Or, you can say a more traditional family counseling. Many churches offer counseling services. To me, the only thing wrong with not seeking mental health assistance is not seeking it at all.
Thank you to all of the men and women who have served in the US Armed Forces!
Since I have Charcot-Marie-Tooth, I wasn’t able to serve. I can remember feeling left out somewhat as many friends did and neighbors did.
I wish I could shake the hand of every Veteran in this country to show how grateful I am for everything you have done to protect our freedoms and the country. However, that’s not possible, so I say a hearty “THANK YOU!”
If you would have told me thirty or so years ago that I would be celebrating my wedding anniversary, much less my 25th, I would have laughed in your face! Why? As a young man with Charcot-Marie-Tooth (CMT), it was challenging enough to find a girlfriend much less one who would love me for me and looks past the deformed feet, lack of strength and ability, to love the real me.
As a young man, there were only two things on my mind. Women and sex. What else was there? Okay, so three. I wanted an education that would further me along in life. At this point in my life, I was a Christian and held to the virtues of being a Christian man, especially when dating. Why especially when dating? I was taught to respect the women I date, always treat the lady with my best manners, and have no sex before marriage. When I learned the value and responsibilities in all of that, I held onto them as I didn’t want to be disrespectful of women, nor did I want to be a very young father.
If you have Charcot-Marie-Tooth, you know your physical body is not like others. You know your physical challenges most likely will progressively worsen. And, I knew it. My feet had high arches and my muscular system doesn’t develop like other guys. I was scrawny and weighed around ninety-eight pounds. I was definitely not the hunk of athletes or even close. However, it wasn’t as important as I thought at the time.
The important thing I had to learn before I would find a wife and get married is to love myself. High arches and scrawny physical-self all of it. Also, I had to learn to be myself. I have a funny personality but if I am always thinking about CMT and its ramifications, it won’t shine through. It took more time to do all this than I had hoped but it worked.
Several years later, I met the most wonderful woman. She fell in love with me, what’s not to love, and I fell in love with her, what’s not to love? We recently celebrated our 25th Wedding Anniversary. We have been through life’s ups and downs together. She has been an awesome encourager when it comes to CMT and my challenges.
It seems like I am always saying this these days, WOW! time really flies by! They say, as you get older time flies faster. I’m inclined to believe it. Only yesterday, I was changing the clocks for Daylight Saving Time and now, I’m turning them back.
Having moved to the country earlier this year, quite a bit has changed. I’m hoping I remember to turn my clocks back tomorrow before I go to bed. Usually, I get up and start resetting the clocks back which are least used during the day. That way, if I forget, at least I will not miss church on Sunday.
I had put off being diagnosed with Charcot-Marie-Tooth (CMT) as long as I could. However, the pain in my feet and lower legs had gotten so bad by age 22, that I needed to find out if it was CMT, or something else.
The doctor gave his diagnosis and I was right as expected. It’s CMT. He gave a prognosis of not being able to walk after age 40, would be using a wheelchair, that I should never run, should not do this, should not do that, and the list went on and on. Of course, being a young man and in college, sex was always on my mind but the doctor didn’t say much about the subject.
I left the doctor’s office pretty upset and disappointed. It seemed that my life was crushed or over. Everything was falling apart. I wanted to finish college, find a good job, find a wonderful woman to marry, and live happily ever after in our 4-bedroom home with 2.5 children and a dog. That seemed to be disappearing.
Most of the guys I knew or had seen in classes at college were in great physical shape. They were athletic, happy, and able to do just about what they wanted to do. I wanted that. However, it wasn’t going to happen.
When I look back, I believe that God had heard my silent cries of disappointment, and, hey, maybe even angry tears. I didn’t blame Him as it just never really occurred to me to do so and probably because to me, that was disrespectful. I don’t remember praying about it either. I wouldn’t see the extent of what God heard, saw, or felt until I went back to college in the fall.
After the diagnosis, I went back to what I was doing in life. Playing, working, running, and doing whatever. I went back to college in the fall as I wasn’t going to give in to this disease!
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.
Disclaimer: I am NOT affiliated with Bemergroup. I receive no payment should you purchase their product. I purchased a product for personal use so I am sharing my experiences as a Charcot-Marie-Tooth (CMT) patient. My experiences are not guaranteed to be yours.
A few months a month ago, I wrote a post about my frustrations with Charcot-Marie-Tooth (CMT) and COVID-19. You read can the post here. I want to share with you an update.
The effects of CMT began showing their ugly annoyances during late October 2020 as I had no Deep Water Aerobics classes, my Service Dog had passed away, and I had no other exercises. Bicycling had to end when the weather got cold. It seemed I was losing more ground on feeling good. However, my faith in God reminded me there is always hope.
After my Service Dog passed away, I began to realize that he had been doing quite a few things to help me. Something about dogs! Not only did he keep me moving, but, he managed to stave off many of the neurological issues associated with my type of CMT. Also, he helped my introverted-nerd personality become a little more extroverted. Fortunately, I was able to adopt another dog who is learning to be a companion. I am looking forward to seeing what she does to help me with CMT.
Since my last post about being introduced to the Bemer Group products, I bought the product and have been strictly following a daily routine as instructed by my Massage Therapist. Before I did this, I went through a few months of testing the product and learning the results, and going over them with her. Successful results led to having the therapy daily.
As you probably know already, CMT causes quite a bit of discomfort in many ways. I lived in shorts and T-shirts most of the fall-winter season as I could not be comfortable in other clothing. For me, that’s unusual because of the cold. Thankfully, the treatment with Bemer Group has helped me with relief from the discomfort.
The best part of the Bemer daily routine is I can do it at home from the comforts of my own bed. It’s the first thing I do every morning and at the end of the day. My routine takes 16 minutes with both sessions. The short bit of time has given me quite a bit of energy as I have never had before.
For me, I have noticed that the arthritic pain in my hands has gone away. The winter of 2020-2021 was the first one in which I did not have to take pain medications to ease the arthritis pain. Also, I have noticed an awesome increase in energy level which has caused renewed interest in many aspects of my life.
Now, I just need to find an exercise routine to make up for not taking the Deep Water Aerobics classes.
Talk with your doctor and neurologist about Bemer Group products.
Please note: Bemer Group products are not intended to diagnose, treat, cure or prevent any disease. I am writing about my experience. Please consult your own physician or healthcare provider if you have any medical concerns.
