September is CMT (Charcot-Marie-Tooth) Awareness Month. The annual campaign encourages those with Charcot-Marie-Tooth (CMT) to share their experiences with the disease through social media.
Besides this blog, I haven’t shared with others about CMT. This is mostly because I tend to maintain my privacy for many reasons, which I will share in a separate blog post. However, it’s probably time for me to start sharing more so it can help others.
However, I am an introverted nerd who doesn’t care to share about my CMT on social media because it’s too personal for me to do so. Typically, I share general stuff about myself. I’m not saying that sharing on social media is bad; it’s an individual choice. If you decide to share about CMT on social media, please include the hashtags #letsbeatcmt and comment below so I can enjoy your post.
I recently decided to find a primary care physician and a cardiologist near my home instead of driving a considerable distance to suburbia for appointments. Since CMT is a huge part of my health and daily life, I made sure to share my health issues with my doctors. I was pleasantly surprised to discover that my primary care physician in my small town knew more about it than my suburban doctors.
Another important time that I shared about CMT was when I decided to work with a personal trainer at a local wellness center. Since the trainer would create a workout routine to help me feel better, she needed to know everything about me. I explained CMT as best I could, including my type, what I live with, and the CMTAUSA website. This was very helpful to her as she was better equipped to create a workout for my needs.
As I have worked out in the gym over the past year, I have had many questions about my feet and walking. I took time to explain CMT and its effect on my abilities. It turned out to be some quite interesting conversations.
About a year ago, I decided to find a massage therapist near my home instead of taking that suburban drive I mentioned earlier. When I was looking for someone and when I found someone I was going to use, I informed them about CMT.
As you can, share about CMT, your experiences living with it, and any tips you think could help someone else. Please leave any comments you’d like to share in the comments section below.
Although I am an introverted nerd, I am slowly beginning to realize that sharing what I know about CMT and meeting others who have it is comforting and beneficial. I recently began attending a group meeting via Zoom.
If you are unfamiliar with it, the Charcot-Marie-Tooth Association is an excellent website for learning about Charcot-Marie-Tooth (CMT). The CMTUSA has done extensive work in research about the disease. Visit their website to learn more about it.
To my surprise, my quiet Sunday ended with a tornado passing within a mile of my house without my knowledge until a few days after it was over. Unfortunately, yet fortunately, this exposed a flaw in my emergency preparedness, sparking concern for other storms.
Sundays are my favorite day of the week. I attend church in the morning, have lunch, and take my afternoon nap. That week was a little different, as my wife was out of town attending the Gaither Homecoming Friends concerts in Gatlinburg, TN, with a lady friend. I stayed home with our pets. Instead of eating out for lunch, I grilled myself a steak and shrimp dinner after my nap. Dinner was delicious. It was followed by an evening reading on the deck, one of my favorite pastimes in the warm weather season.
However, not too long into my reading, I noticed thunderstorms approaching the area. I heard them off to the west, but they didn’t seem severe, nor did they appear to be coming this way. There weren’t any weather alerts out, nor was I hearing a lot of thunder. Also, sometimes storms follow the mountains and go north, never really affecting our area. So, I continued reading and listening to my music.
However, my dog Abby was hearing or sensing something I was not. She normally isn’t concerned about thunderstorms and doesn’t want to go inside if it’s raining, especially if deer are in the field. She approached me at my chair and then went to the sliding glass door as if to say, “OK, it’s time to go inside. Let’s go!”
It was almost 9 p.m., so I decided to head to bed and read for a while. There was no sense in getting into computer stuff or turning on the TV because there would likely be a power failure as the storm went through.
As I curled in bed to read, I opened the window and turned on my music. It wasn’t long before the bedroom door started shaking. I thought the storm pushing through was causing it, so I closed the window and went back to my reading. I became concerned that maybe my cat needed something, so I went to check on him. As I did, my dog headed to the hall bathroom and hid. That was unusual.
During this, I missed any weather alerts about possible tornado activity in our area. However, my best friend in Arkansas didn’t—he immediately texted me about a tornado warning. With only a few minutes left of the warning, and I didn’t hear any unusual weather, I went to sleep.
The following morning, I learned that I had missed all of the weather alerts the National Weather Service sent out. Why? Since I have several apps on my phone, they alerted me to the incoming storms and a tornado warning. I didn’t receive the alerts because I do not sleep with my phone. Charcot-Marie-Tooth (CMT) causes sleeping issues for me, so I leave my phone charging downstairs so I’m not disturbed. The tablet that I used for reading was with me; however, it didn’t have any weather alerts.
As a CMT patient, I believe I should be extra prepared. Whatever we can do to prepare for an emergency or stressful situation is best. The next day, I took some time to look at weather alert apps and radios.
I found an app created by the American Red Cross that looked to be perfect for alerting me to bad weather. I installed and programmed it on my tablet to alert me for weather specific to my area. That evening, I learned that the app worked great as tornado watches were issued by the National Weather Service.
When the weather radio arrived, I programmed it for my area, set it up in a central location of my home, and let it go. I bought a Midland product because I’ve had good luck with them and heard good remarks about them. It was set up in the family room for about a week before I had a chance to learn if it worked and if I programmed it correctly.
If you live in an area with severe storms, such as tornados or hurricanes to name two, you should be as prepared as you can. Even though I do not live in those storm-prone areas, I do a few routine things to help me should there be an emergency. Every night, I place my shoes, braces, and extra shoes in a specific area of the house. When I use them during the day, they are returned to their spot. That way, I can grab and go. Clothing is placed in a spot where I can grab them, too. Also, my phone is always left charging in the same place. Grab and go, should I need to do so. My dog’s leashes are kept in certain locations in the house, so there is no last-second searching. These may sound a bit trivial or routine, but it would help in an emergency. For me, fewer steps to finding something is better as it means less pain in my feet and less anxiety in an emergency.
The Fourth of July, Independence Day, brings back some great memories from my childhood and young adult years. They are a reminder to love family and friends, making time to enjoy their company.
When I was a young boy, as young as I can remember, my parents would take my brother and me to the hills of West Virginia to visit my grandparents. We would arrive a few days before the Fourth of July and stay a few days after. I like that because it gave me time to watch the trains rolling through my grandmother’s hometown. That was the highlight of the trip for me.
However, on the Fourth of July, the family on my mother’s side would gather at my Aunt Mary’s house on the side of a mountain. Everything is on the side of the mountain in West Virginia. There were quite a few cousins, uncles, aunts, grandparents, and great-grandparents, and the list could go on and on, gathering together for a day of fun.
There was always plenty of food, drinks, and desserts to last the day and a few afterward. And, there were games and hiking too. A few years, we went to the local city for the evening fireworks.
Aunt Mary and Uncle John were my mother’s favorite aunt and uncle. She always enjoyed the time she had with them. She spoke of them quite often during the year before our annual gathering.
Then, there’s my mother’s sister Connie. They loved each other dearly. They would chat about everything in the entire universe as if they hadn’t spoken with each other for years when, in actuality, they had spoken by phone possibly as much as once a month. They were the type that would giggle and laugh about everything leaving my Dad and I to wonder what was so funny. Usually, there wasn’t anything funny to the rest of us.
As a young kid, I didn’t quite enjoy these reunions as much as my family did. I always wondered what trains I missed watching rolling through town. However, I remember how much the family enjoyed the time together.
In my older adult years, I have come to miss these reunions. The family has either passed away or gone their separate ways. It seems it was the older generation that kept the reunions going, and as they went on to heaven, the gatherings ended. I have a few relatives which I am still in contact with which I have the pleasure of connecting up with once in a while.
However you celebrate today, may it be a blessed one full of fun and fellowship. Remember the reason we celebrate the day too. For if it weren’t for the many people before us going ahead with their dreams of a new country, we wouldn’t have the freedoms we have.
“Praise him with the sounding of the trumpet, praise him with the harp and lyre, praise him with timbrel and dancing, praise him with the strings and pipe,”
– Psalm 150:3-4
This Father’s Day, my father has been on my mind quite a bit. Granted, when he was living, I celebrated the day with him and did other things, too. But this year, I miss him quite a bit.
One factor in my life that may have triggered memories is that I listen to classical music more these days than I have in recent years. While he blessed my life in so many ways, he was known for his love of music and often had it playing around the house.
In my young adult years, I began a hobby of collecting classical music on compact discs. Dad and I used to go to Tower Records together and shop for new recordings or ones we didn’t have in our collections. He always found a few, and I found more than that. Then, we talk about what we bought and, sometimes, why we did.
Little did he know, or maybe he did, that sharing his love of classical music would be of invaluable help to me in my battle of living with Charcot-Marie-Tooth (CMT). I cannot count how many times I have had classical music playing, whether on radio or compact disc, and nowadays streaming, and I have found relief. I remember a few times when the pain and stresses of the disease were considerably bothering me, and I’d hear a Mozart Piano Concerto, which seemed to melt those issues away. Or, a piece by Handel from the Baroque period would do the same.
Recently, my music system had issues playing my music. The company did a poor job updating the app used to stream or play compact discs. I wasn’t happy. I was frustrated, to say the least, because I couldn’t play music wherever I wanted. I have two portable speakers that allow me to play music outside wherever I am. This time of year, I enjoy playing music while working in my garden or reading on my deck at day’s end. The problem was corrected, but it confirmed what I knew: I love my music.
As I play music and do chores around the house, I think of my father. He would be doing the same thing- listening to music.
My father taught me the most important things in life: God, the Bible, Jesus, and the church. He took us to church every Sunday morning and night, Wednesday night, revival services and special events. Doing those things doesn’t make you a Christian, nor do they guarantee that you will go to heaven when you die. You must accept Jesus Christ as your Savior to go to heaven.
As he lived, he taught me about being a Christian by being a living example, the enjoyment of classical music, and so many other things that I cannot even begin to list. I miss him today, probably more than usual. But, that’s okay, as I wouldn’t bring him back from heaven for any reason. Occasionally, I enjoy the thought that he is finally leading the choir of his dreams- a heavenly choir where there are no parts or instruments missing. It’s all to the glory of God.
May you have a blessed Father’s Day. Hug yours. Call him.
I would like to wish the mothers and grandmothers who read my posts a very happy Mother’s Day! May you have a blessed day with your family.
Today is a holiday that is not very popular with me since my mother passed away twelve years ago. I’m not sure if it’s the holiday that causes me to miss her as it is the season.
My mother was an avid gardener. She loved planting flowers and other plants in her yard. When I was around 7 years old or so, Mom planted a vegetable garden behind the house. It was pretty tasty to eat the vegetables she had grown. While I haven’t taken on her interest in growing vegetables, I have gotten into planting flowers. I have to laugh, as there hasn’t been a season since her passing that I haven’t wanted to call her for advice.
Recently, I had an opportunity to sit in a meeting to hear a lady from Canada discuss her life with Charcot-Marie-Tooth CMT). She discussed having quite a few challenges that were quite a bit like what I have dealt with over the years. Something she said reminded me of my mother’s love for me. My mother never hesitated to let me know she loved me. As a young man, that wasn’t exactly what I wanted to hear back then. However, as I look back and think about it, her expressions of love often helped me to deal with the headaches of CMT. I will never know how much she really knew about it since at the time, there wasn’t much written and we certainly did not have access to what was.
So love your mom. Hug your mom. Enjoy your mom as much as you possibly can. Happy Mother’s Day!
Disclaimer: I have no affiliation with brands mentioned in the post. Nor, have I been paid, received compensation, or any free products. I am sharing this for educational purposes only. Nor is this an endorsement of stated products.
I wore the Asolo hiking boots for quite a while. When a pair wore out, they were immediately replaced. However, the product’s sturdiness, despite the deformities in my feet, lasted longer than other products. These boots supported my ankles and feet as they were designed for the rough hiking terrains. As I retired, I no longer needed to worry about keeping them perfectly spiffy for the office. Also, I wore Crocs to church on Sunday mornings since I would not be walking very much. It gave the feet and legs a break.
However, after a while, the pain in my legs and feet after spending nearly the entire day working in my garden, doing other chores around the house, and walking my dog between two-three ½ miles became quite unbearable. I tried to get myself to relax by taking off my shoes and socks, letting them rest, and staying off of them. Eventually, the pain would settle down. However, going to bed was a different story entirely. Since I sleep on my back, the calves of my legs would scream in aching, painful discomfort. I had to get comfortable, so I would roll to one side or the other, trying to do so. However, sleeping on my side isn’t a favorite for me. Once the discomfort settled, I could lay on my back again.
As the challenges grew more painful, I decided that I had to do something. Since it had been years since I had braces and worked with a brace doctor, I did an internet search to find someone to help. Also, I absolutely did not want the plastic braces that uncomfortably gripped my legs. It was an easy search to find an Orthopedic Center near me. I discussed visiting their office with my primary care doctor, who gave them the highest praise. That gave me the confidence I needed to check them at least out.
Before the appointment, I gave considerable thought to having surgery to straighten my feet. I prayed about it, as this was a serious move for me. I read articles about the procedures, which indicated that they had been improved with patients having better outcomes. So, I made an appointment with the doctor.
Upon arriving at my appointment, I was surprised by the doctor’s calm, gentle, and humorous demeanor. This made me relax quite a bit. I felt like he was genuinely interested in me and my health. As we discussed the surgery, after a few tests about ability and x-rays, he shared with me that after surgery, I would need to have six months of physical therapy to get the foot stronger. Also, getting used to walking with a somewhat normal foot would be a challenge since I cannot remember ever having one to start with. It would be time to do the same procedure on the other foot when it was strong enough. However, since I am still walking, I decided that I would wait on the surgery until I am unable to walk if that happens. Also, I had not gotten a clear answer to my prayers to go forward with it.
After some discussion about the uncomfortableness of the plastic braces and my interest in something to support my ankles but not too far up the legs, the specialist decided an Arizona Brace would be my best solution. Why? I didn’t want anything like the plastic ones I had before. They were too uncomfortable and clunky. Also, these looked to give me the support and comfort I needed.
After I finished with the doctor, I met with a Physical Therapist who discussed the concept of the Arizona Brace. One issue for me was that there would be no hinge at the ankle, which I thought would make mobility more challenging. My mother had braces with no hinge, which made walking more challenging. Since I am determined to keep going, I discussed this issue with her. She answered all my questions, confirming my doubts would be worked out.
At this point, the physical therapist took me to a laboratory in the office. She molded my legs from just above the ankles to the feet, much like a cast. Also, I got to pick the color I wanted on the outside of the brace. Since I like a colorful life, I chose blue, not skin color. I would pick them up within a few weeks.
The weeks passed by quickly, and I was at the doctor’s office picking up my new Arizona Braces! I was happy as I saw them as opening the door to remain as active as I wanted to be and possibly even more so. When I arrived, I was taken to the Physical Therapist’s office and shown how to put them on, lace them up, and tie them. She clearly told me, “Be careful when you stand up. Once you get used to standing, you can try walking down the hallway. However, BE CAREFUL! Go slow. This is not a race!” Of course, I, unintentionally got up to walk and went quickly down the hall like it was a race. The Physical Therapist had a hard time keeping up with me. She said, “SLOW DOWN! BE CAREFUL! SLOW DOWN!” So, I was off and running, so to speak.
I have to admit, I was surprised at how comfortable the new braces felt against my legs and feet. Of course, there was some time to get used to wearing them, much like when you buy a new pair of shoes. These braces required that I wear them for a few hours a day gradually building up to a full day. I learned to walk again. I learned how to walk my dog again. The list could go on and on.
I think the most challenging part of all of this was not to get discouraged or frustrated. After all, most guys put on a pair of socks and their shoes, then go about their day. I put socks on, put the braces on, and tie the braces tight, followed by my shoes. The shoes were a new brand to me, Hoka One Ones. They were, and still are, the most comfortable shoes I have ever worn. Also, I think God gave me a gift that day as the shoes were very colorfully designed, which cheered me up.
To this day, I wear my Arizona Braces every time I walk more than a half-mile. I wear a pair of Hokas when I am not walking a long distance, such as from the house to the car, from the car to the church, or to the restaurant. The braces have given me more strength and ability as they support the weakness in my ankles and feet. Much like God promised me years ago, He would be my strength and ability.
Today, Easter Sunday usually brings me much contemplation as I think about what Jesus did for me on Good Friday and Easter.
Having grown up in a Christian family, around Christian friends, and known more than a few pastors and those desiring to be pastors, I’ve learned quite a bit about what Jesus has done for all of us. Learning about it is one thing, but accepting it and becoming a Christian is another. Also, I’ve learned that I’m not a very preachy kinda guy either, however, I want to share God’s Love with as many people as I can.
Jesus came to earth to minister and teach about God’s Love for everyone. However, on Good Friday, He was crucified. He arose from the dead on Easter Sunday so that we may have eternal life in heaven with Him, IF we accept Him.
If we accept Him? To understand that, please visit To Know God.
I hope and pray that you have an Easter full of God’s blessings. If you don’t know Jesus, I pray you will find Him today and truly celebrate the reasons for this day.
You might be thinking that I am a day behind since the first day of Spring, the Vernal Equinox was yesterday, not today. I have been traveling and am a bit behind. Also, I was thinking spring started today but everything is a bit earlier this year and I didn’t catch it.
Since this is probably my favorite season with summer following a very close second, I couldn’t pass up celebrating the day. Spring is my favorite season because it means the harsh winter storms are over, what little we had. If we get a winter storm, it will melt off fast and not be problematic to get around. This year, we had a few storms but they were mostly rain except maybe one snow but it wasn’t enough to keep me home for a day.
As the past fall and winter season came upon me, I decided that I would bide the time by taking classes. The first I took was “The Theology of Eschatology,” from September to December. My interest in Biblical End Times has been a fascination for many years. I had a few others planned, however, a few health challenges arose that kept me busily distracted for about four months. Things are great now, just in time to enjoy my favorite season.
I learned a lot during the health challenges that I plan to write about. However, coming into Spring with all it’s outdoor chores and opportunities, it might be a bit before I sit down and write. Hopefully not as I think those with the challenges of Charcot-Marie-Tooth might benefit from what I learned.
Happy Spring! Get outside this season and enjoy the beauty of God’s Creation!
What does Charcot-Marie-Tooth (CMT) and Wolfgang Amadeus Mozart have in common? From a view of music theory or classical music interests, probably nothing. Classical music and CMT is a different story. As far as I know, Mozart did not have CMT disease.
When I attended college, I didn’t anticipate having to take a class in music and arts. The class was called “Aesthetic Experience.” Most of the students on campus called it “Anesthesia Experience.” I wasn’t one of them because I’d already been exposed to the value of the arts. Further, my father played classical music around the house, introducing me to it at a young age. I grew up in the Washington D.C. metro area where we had a 24/7/365 classical music station that was incredibly awesome, WGMS 103.5 FM. The announcers had an awesome sense of humor coupled with making the music more entertaining and interesting than their Public Radio counterparts.
The college course educated me about music and art history. Part of the course requirements was to attend classical music concerts and visit art galleries. I enjoyed that because it got me off campus for a bit and helped to discover that Nashville had more than just country music performances! After attending an event, we had to write about it using some of the theories or techniques and terminologies we were taught in class, much like writing a review. Fortunately for me, I learned quite a bit in the class that I had not known before.
After I graduated from college, it wasn’t long before I discovered how the beauty of classical music can help relieve stress for the CMT patient. I learned that if I play classical music while doing things around my apartment or even while reading, I could feel the stress immediately melt away- especially works by Wolfgang Amadeus Mozart.
Mozart composed 600 works over his short thirty-five years of life (1756-1791). He was a musical genius at a very young age. Many scholars and music lovers will say that he never wrote a wrong note. All I know is that I enjoy every piece of music he wrote, whether I hear it at a concert, on the radio, or on a CD recording. He is one of my favorite composers.
In the early days of life, when I was trying to learn about CMT and taking care of myself, the discovery of Mozart’s music was often a way for me to relax, escaping the health challenges- at least for a while. The gentleness, as I call it, is an amazing experience that I highly recommend to anyone struggling with the neurological side of CMT.
I recently found a classical music streaming service that provides many hours of concerts. Between that, satellite radio, and my compact disc library, I plan to spend my day listening and watching, as it may be, much of Mozart’s music today.
Another year has passed faster than I anticipated. And it didn’t seem to be that fast when I was going through the year, but here we seventeen days into the beginning of another new year. Every once in a while, a buddy will text me, “Wow! The week has gone by so fast!” More recently, “A few more days of 2023 to go.” I know how he feels, though I think time goes faster for him since he’s older than me.
2023 was my most challenging year yet, though it had some great aspects or parts along the way. At this time of year, I like to reflect on what I accomplished or didn’t accomplish over the past year. Also, what was fun and challenging, and where was I successful? To be honest, I can be pretty hard on myself. Not because I have low self-esteem or anything like that, but because I want to always be my best. Also, there isn’t much point in reflection if you aren’t truthful with yourself.
The year started out with problems relating to my medications. In 2022, I asked my Nurse Practitioner if she knew why I was taking certain medications. She didn’t, so I discussed stepping down from one medication. She was fine with that so I followed the recommended routine to do it. While stepping down, I didn’t notice any difference with me so I continued planning to quit taking it.
The new year 2023, brought a prescriptions refill faux pas between the doctor’s office and my prescription company. One said the other had requested a refill when in actuality, neither knew what the other did. I ended up unintentionally stepping down from these medications too.
About this time, I discovered a holistic product that could help me with pain and the neurological issues associated with Charcot-Marie-Tooth (CMT). I was excited about it because I prefer taking holistic products over medications and want to try that before taking a new prescription.
Since I had stepped down from another medication years ago, I was hoping that stepping down from these three prescriptions would be as successful. However, that wasn’t the case. In March 2023, everything came crashing down on me. I was having breakfast at a local restaurant with a buddy when I started feeling the worst I had ever felt. I wasn’t in danger of anything except that I felt horrible with my neurological system acting crazy. Long story short, I returned to the three medications, which were doing a great job with my neurological system. Now, I know what the medications do!
A highlight of 2023 was in February when I began working out at a local wellness center. I met a personal trainer who is a Christian. She quickly agreed with my belief to “believe the impossible.” My belief is if God wants me stronger and healthier, He will help me accomplish it. Yes, I have to do all the work but He will help me reach goals that otherwise I could miss. I spent the year working on an exercise routine with weights, a few other exercises, and a deep water aerobics routine. By year’s end, I had raised the weights on the machines by ten pounds!
I ended 2023 with an interesting journey. I learned that I had injured myself somewhere along life’s way when I was having fun. I have no idea what I did to cause it. This was proof that is often difficult for someone with CMT to know they hurt themselves. I sought medical help with it, which led to discovering another health problem existed. While a bit challenging, God brought all of this together in a way that blessed me, as it didn’t require a hospital visit.
My goals for 2024? Exercise a bit more. I plan to increase my weight-lifting by at least 10 more pounds or more, while the deep water aerobics will probably stay about the same. Last year, I took a class on the “Theology of Escathology” through a local college and enjoyed every minute of it. I am looking to take more classes like that this year. No, I am not looking to be a theologian but to learn more about God and my faith.
I heard on the radio recently about a lady who doesn’t believe in making New Year’s Resolutions. The word “resolutions” was too harsh and she often wasn’t successful. Instead, she “amends” whatever she thinks needs to be improved. I like that idea. I am going to “amend” certain things in my life in 2024 hoping to be successful.
Do you have any goals for 2024? Please share them in the comments below.
