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.
“A Christmas Tree Lights the Night” (C) Photo by Tim Mossholder
As it seems to be the usual routine for me when the year is coming to an end, the last three months of 2023 were unbelievably busy. I don’t know how I ever worked in an office and got anything done, as I wouldn’t have had time these last few months.
I hope you had a very Merry Christmas and a very Happy New Year. Mine were nice and quiet- my favorite way to spend a day. The holiday season started with a Thanksgiving dinner at the Skyland Restaurant in the Shenandoah National Park. We were joined by my best friend Ed, whom I met in my college years. My wife, a family friend who didn’t make it this year, and I will probably make this our traditional Thanksgiving dinner. It would be awesome if Ed got to join us, too. After we ate, we drove the Skyline Drive from the restaurant to the Harrisonburg area and returned home. The solace of nature is a blessing even in the winter months.
Ed came to visit the week before Thanksgiving. We spent the week roaming Skyline Drive and a bit of the Blue Ridge Parkway. We’d pull off at various overlooks to enjoy the view. While driving, we chatted about our college days and wondered about whatever happened to this or that person. Ed is the type of friend everyone with Charcot-Marie-Tooth (CMT), or any other disability for that matter, wants. He doesn’t let my disability prevent us from doing stuff and having fun. On numerous occasions, he would give me a helping hand as he knew the terrain coming up was a bit challenging. Also, when CMT frustrates me with its new antics, I can chat with him as much as I need. He’s a very good listener and has often provided God’s Words of Wisdom just as I needed it without being preachy.
Christmas was a little different this year. My wife and I bought a new Christmas tree and ornaments. The one we have is buried somewhere in the garage, along with ornaments and decorations that are older than civilization itself. I enjoy decorating for the season, however, I do not relish the idea of putting an artificial tree together followed by stringing lights around making it look balanced and nice. Oh, and beautiful, too. I will never be like a buddy of mine who has an enormous tree and thousands of decorations. Though it looks great, it’s too much. My wife and I exchanged gifts the old-fashioned way this year. They were wrapped, placed under the tree, and opened in a celebratory fashion on Christmas. It was a nice way to celebrate the Birth of Jesus.
We are still working on the new tradition as our last living family member went on to heaven, so it’s now the two of us. We invited a friend to join us and went to Founding Farmer’s restaurant in Northern Virginia for our Christmas dinner. Our friend was great company and helped make the celebration more fun. I got to sit in the backseat of our car while my wife drove and our friend rode shotgun. Worked great for me as I enjoyed looking out the window and thanking God when we left suburbia and returned to the country!
A few days after New Year’s, I got to spend a few hours with a young man I call my grandson; more about that in a later post. We had breakfast at a local Chick-fil-A and talked for a few hours. He is one of those guys who is very popular, has a large family, and always has something to do somewhere with someone at any given time of any day of the entire calendar year. So, I cherish the few hours he can squeeze in to spend with me. It’s been an amazing journey to watch what started out as a “joke” or having fun with the age difference between us to become great friends, something God has definitely been in the middle of pulling together.
Every year, I think that I will spend the holiday season differently by celebrating the birth of Jesus by attending various church events, going for a drive to enjoy Christmas lights, or doing something special that makes the season fun. No sooner have I thought it and the season is gone… again.
I have been thinking about what tip I have learned over the years living with Charcot-Marie-Tooth (CMT) would be my “best tip” or “No. 1.” Or, which one would be most beneficial? I can share many tips, tricks, and hacks, but only one stands at the forefront of anything I have ever done that I would never want to be without.
What is it? Follow Jesus. I gave my life to Jesus Christ, allowing Him to take over becoming a Christian. I recommend reading the Bible, a daily devotional, attending a local Bible-believing and teaching church, and getting involved in it. Yes, simple as that. I will admit, I would absolutely NOT EVER want to fight any of the battles against Charcot-Marie-Tooth (CMT) as I have over the past forty years without Jesus. He has been a strong comfort and encouragement beyond what I could ever explain in writing.
I had the blessing of being born into a Christian family, which doesn’t automatically make me a Christian, but it provided exposure to serving God from the day I was born. At age 6, I remember thinking I wanted to be saved from my sins like the preacher talked about. I believe I became a Christian that day, though I do not remember the date or time. In my early college years, I became concerned by something a professor said about whether I was truly a Christian. I invited Jesus into my heart again- just to be certain.
It wasn’t until my college years that I learned how much Charcot-Marie-Tooth would affect me. The pain I had in those early years was beyond description, meaning I can tell you, or write about it, all I want, but unless you go through it, you don’t understand. I’m sure those with CMT will agree, or you will eventually.
The salvation from my sins so that I will go to heaven when I die wasn’t the only part of God’s Love that has helped me get through life. It’s His Compassion, Companionship, Love, and Desire for wanting me to be the best I can be.
I cannot remember how many times I have had pain in my feet, legs, hands, and arms and reached out to Jesus asking for His Help. Sometimes, I would just talk to Him because I knew I could trust Him to keep my secrets. Sometimes, when CMT was bothering me, I didn’t want to burden someone with my struggles, so I talked to God about them. Other times, I would get discouraged or in a funky mood about life with CMT, so I talked to God about it. It has been truly amazing at how He reached down to provide me comfort in many ways.
In the early years of college, God told me that He would be my strength and ability if I would just trust Him. That I have. I wish I could say that I have been perfect along the way, but whenever I strayed, God always did something to remind me He was there for me.
While in college, I was teased quite a bit by the other guys. I was surprised how much this bothered me because I had already gone through it in high school and the real world as a working adult. Their goal seemed to remind me that I wasn’t physically fit like them or was only half a man because of my lack of muscle and probably how my interesting-looking feet looked. Eventually, I learned to tune most of them out. After all, I was there to get an education so I could get a better job.
In God’s Plans of doing things, He brought a Christian man into my life to be my college roommate for the last few years of school. This guy was kinda nerdy and very smart, had polite manners, and was fun to hang out with. He was one of the first few college-age guys who treated me with respect and not some kind of problem because of my recent diagnosis with CMT. We would go on to be lifelong friends, catching up with each other in our later years, which seemed to be picking up where we left off. Ed has always been a source of encouragement and has done his best to help me see the positive in everything. In these later years, when CMT seemed to be making strides faster than I could keep up with, it’s been an awesome help to have him around to text my frustrations. This friendship may not have come together if I didn’t believe in God and become a Christian many years ago.
When I look back over the last thirty or so years, I can see where God directed my path to the right doctors, specialists, physical therapists, chiropractors, massage therapists, a personal trainer, and a service dog. All of these came together to help me have a healthier and happier life. I know it was all God’s doing, as I couldn’t pull together such perfect medical care no matter how hard I tried. At age 60, I am using much less medication than I originally thought I would, which gives me a much more quality of life.
So, yes, becoming a Christian and following Jesus is my best tip!
Every November, I seem to subconsciously begin thinking about what I am thankful for and why. I guess the leaves falling and the colors changing with the cooler weather spur my thoughts toward being thankful. This year is no exception, especially since 2023 has been a bit of a rough and challenging year.
The year has been a bit rough, with some physical challenges along the way. I am planning to write separate posts about this, so I won’t go into too much detail now. However, I will say that it seems to me that I needed to go through those rough challenges to get to the point where I am now, which is feeling better than I ever have. For that, I am very thankful.
At the beginning of November, an announcer on the local Christian radio station, WPER 89.9 FM suggested writing down one thing you are thankful for every day in November. It doesn’t have to be detailed or something big, just write something down. Though I didn’t make a list on paper, it reminded me to think about it every day. And, why not continue writing down what you are thankful for every day whether it’s November or Thanksgiving or not?
This year, my Thanksgiving celebration will be our 2nd Annual in a new tradition that started last year after our last family member passed away. We’ll head to the Shenandoah National Park’s Skyland Restaurant for our meal. This year, we will be blessed to have two friends join us. One of them came with us last year and we hope to make this a “family” tradition for the three of us. The other friend, who I hope will join us again, is my best friend who was my roommate during college. We’ve had a great week together exploring the area and will celebrate Thanksgiving too.
However you celebrate the day, I pray you have a blessed one.
I think the hardest posts for me to write every year are the ones that are intended to honor our veterans (Veterans Day) or to remember them (Memorial Day). Why? The words, “Thank you!” “Honor!” “Remember!” and the like. are all great words but they seem to not completely express the gratitude I have for the many men, women, and even, dogs, who have put their lives into protecting our freedoms in more ways than I know.
Since I have Charcot-Marie-Tooth (CMT), even before it was officially diagnosed, my physical body would never met the requirements of the military for enlisted men.
To everyone who has served in our Armed Forces, thank you for everything you have done.
I don’t know about you, but I have no interest in getting up at 2 a.m. to do anything, much less, change my clocks back by an hour. I will start changing the clocks that I don’t use on a regular basis throughout the day today. I started this morning after I got up by changing the bedroom alarm clock. By day’s end, all the clocks are changed.
In some ways, I am anxious for the fall weather to finally set in. I began working out at a Wellness Center this year, more on that in another post, and I’ve noticed that I am feeling much better than I was. I’m interested in finding out how much the workouts have helped the neurological aspects of Charcot-Marie-Tooth (CMT) that cause me not to enjoy the cold weather. Of course, there are other things that may lead to a lack of enjoyment. I’ll figure it out.
If you have read a few of my posts, you know I enjoy parking my car trackside to watch trains go by. I will take my tablet with railroad magazines and several books on it, my camera and video camera, and, most importantly, my dog, park my car safely by railroad tracks, and wait for the train to come. This hobby is pretty popular and is called railfanning. Someone who participates in it is referred to as a railfan.
Occasionally, I see other guys doing the same thing, especially on weekends, but without a dog. Mine goes with me for many reasons that will be shared later in another post. For general information, I wouldn’t enjoy my outings as much without her. And, trust me, she is securely harnessed in the backseat with windows rolled up enough to prevent her from getting out but still has fresh air.
As with many things in the life of a Charcot-Marie-Tooth (CMT) patient, railfanning is not something we can do without planning. It is a fun and fascinating hobby, but it can turn dangerous faster than you would think. Did you know that a train in the United States hits a person or a vehicle every three hours? That it takes a train approximately one mile to stop?
First and foremost, all railroad tracks, including approximately thirty feet on each side, railyards, bridges, and tunnels are railroad property. Therefore, they are no-trespassing areas to avoid. The railroad companies employ their own police and other security measures to help maintain safety on their property. Whenever someone cannot obey the no trespassing guidelines, it can lead to stricter measures, which may cause others not to be permitted to railfan.
I always park my car at least 30 feet from the railroad tracks and ballast. I am uncomfortable parking as close to the tracks as possible. I do this to keep myself and my dog safe. I saw a YouTube video recently where a train was traveling at a good speed with a piece of metal hanging off the side of a freight car. Apparently, the engineer nor the conductor knew it was happening. If someone were parked or standing close to the tracks, they would have been hit. Also, as CMT patients our mobility is somewhat challenged. For me, I can’t always turn and run. Obviously, I would just risk turning my ankle in a situation like this. However, staying away from the tracks, to begin with, is best.
Regarding mobility, it takes me a few seconds more than the average Joe to move my legs and get out of the way, as I stated earlier. Trains move faster than they appear. They can come upon you before you know it. Also, the locomotives are much quieter than they used to be. I was watching trains in my usual spot when a train snuck up from behind. I was surprised but was safe as I was sitting in my car. As a kid, I remember the locomotives being so loud you knew when one was coming from a distance away. Nowadays, nope, you’re not likely to hear it until it’s upon you.
Another concern with mobility is the ballast used around railroad tracks. Ballast are large rock. These are very challenging to walk on. I’m guessing they are a bit challenging for those who do not have deformities in their feet, too. I stay away from ballast because it can cause me to fall. If I fell on ballast, it could mean I’d seriously or severely hurt my knees.
Crossing the railroad tracks has always been a challenge for me as far back as I can remember. Before I cross, I look both ways to ensure no trains are coming. I never ever cross the tracks when a train is coming. Since my feet will stumble, or even drop, and catch on anything and everything, I could easily trip on plenty of things such as the rails, spikes, ballast, and the list could go on. Heaven forbid I fall when a train is coming. I might not be able to get up fast enough. If I need to cross the tracks, the safest place is at a crossing.
If there are two railroad lines, I never ever go to the middle area and wait. Why not? My type of CMT has a severe nerve component. I would not want to be in the middle of two passing trains because it could set off my nerves, causing me to feel really bad. Or even fall down. Not to mention, any debris from either train could be a problem.
Also, never try to beat a train. Or play “chicken” on the tracks. You won’t win. One morning, I was watching my Railstream camera, focusing on a busy line in Indiana. As the train came rolling up the tracks towards a crossing, a man decided to run across. The phrase “missed it by that much” comes to mind as the man nearly made it. Instead of waiting a few minutes for the train to pass, he had to be taken to the local hospital. Don’t try to beat a train. It isn’t worth it. Wait for it to go through, and then head wherever.
Railroad tracks are meant for trains and track maintenance equipment. Do not jog, walk, or run on them or beside them. Keep yourself safe by doing those activities in areas designed for it.
One of the most insane actions I’ve seen near railroad tracks is those who stop their car on the tracks, thinking the traffic light will turn before the train comes. Actually, you don’t know that. In many areas, trains move quite fast, and they cannot stop for you while you wait for the light to turn. Also, these people who do this don’t allow a plan of escape should a train come. They can’t go forward or backward, and traffic is coming in the lane headed in the other direction. What I like to do when approaching a railroad crossing is to slow down, being alert as to whether a train is coming so I can stop at the last minute. Also, I notice whether I can get safely across if I have to stop for traffic or a traffic light on the other side. My wife says, “You’re hoping to see a train, aren’t you?” The answer is always “YES!”
If you are into photographing trains, always photograph safely away from the rails. Never pose people or animals on or close to the tracks. This is a very dangerous thing to do because, as I mentioned, the locomotives are quieter these days. As a photographer, I know I adjust my camera settings to create the perfect exposure, which can be a distraction, causing me not to notice a train coming. Also, if someone gets hurt, you can be held liable for any damages that happen.
Railroads, watching trains, photographing, or creating videos of trains is a fun and interesting hobby. I’ve enjoyed sharing my photography and videos on social media for those who cannot get out themselves. Help keep this hobby safe for everyone by learning the laws regarding watching trains and following them at all times.
Do your part, and encourage your friends to do the same, to be safe around railroad tracks. This way, you can be around for a long time to enjoy them.
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 for educational purposes only.Nor is this an endorsement of stated products.
About two years ago now, I started to write a series of blog posts about my journey to wearing Arizona Braces, my current pair. My apologies, however, life circumstances got in the way of continuing the posts, causing me to forget to continue the series. The circumstances were all good, just was busier than I’d planned. In case you missed it, here is a link to the previous post, My Journey to Using Arizona Braces.
My first pair of braces, made back in 2000, were made of heavy plastic with a hinge at the ankles to allow some movement and velcro straps to keep them tight on my legs. The braces fit into a good brand of walking shoes, such as Rockport, but a size to size and a half larger than I would normally wear. I wore the typical tube or athletic socks that went to my knees. Yup, oh my word, I looked like a geek… more than I ever wanted!
I wore these style braces for several years. I learned that pulling leg warmers over them in the winter helped warm my feet and legs. Yes, my word, another period of geekiness that I’d never share unless it was to benefit someone. Also, I had to have them rebuilt more than a few times because my Deep Water Aerobic classes caused the leg muscles to get bigger. The doctor who created my braces didn’t seem to be on board with the fact that my legs were getting stronger with muscles growing, too. Though the concept and purpose of these braces work for a time.
However, I got to a point when I was tired of the plastic braces bracing my legs so annoyingly every day. To remedy or relieve this, I wouldn’t wear them in the evenings, some Saturdays- depending on activity level, and all day on Sundays. This provided relief from the discomfort of the braces. The discomfort is something that some might call a “necessary evil.” I needed the braces to walk throughout my day, but the evil is when the discomfort sets in. If you think about it, you can work around the discomfort.
To my surprise, the muscles in my legs continued to get bigger as I continued to do my Deep Water Aerobics. Eventually, this led to a third new pair of braces. However, this would be the last, as the doctor wasn’t on board with the replacement of the braces.
After a while, the braces weren’t fitting again, but I had become unhappy with wearing them. After all, they were a pain to put on and, after several hours, a discomfort to wear. It was time for a break. So I did.
What can help a Charcot-Marie-Tooth guy who doesn’t want to stop enjoying life, but definitely needs some assistance? A good, but a bit expensive, pair of sturdy hiking boots. After doing some research and chatting with a few people, like my chiropractor, I found hiking boots offer quite a bit of stability. This became a dream come true! No braces!
My first pair of hiking boots were made by Asolo. Since they did not have the men’s size I needed, I bought the equivalent size of a woman’s. Since you couldn’t really tell the difference in styles between a man’s pair and a woman’s pair, it made no difference. The stability of this brand kept me going for several years, replacing them as they wore out.
