Charcot-Marie-Tooth: The Blessings of 2024

Every year-end, newspapers, tabloids, and the like publish their top stories of the year. There are usually some natural disasters, politics, crime stories, and other news that are not necessarily the best or good news. Sometimes, when looking back, it seems to almost make the year look worse than it really was. This year, I thought I would do something different by looking at my top events in life and listing the blessings that happened instead of the negative.  I wish I had thought about this idea a month or so ago so it’d be published in January. I didn’t, but I don’t want to wait until next year.

The hugest blessing for me in 2024 was having God with me every second of the year. He guided my steps, took care of my needs, and blessed me in too many ways for me to list without leaving something off. He comforted me during my challenges with Charcot-Marie-Tooth (CMT), my heart challenges, and my frustrations with my health. His comfort got me through them.

A huge blessing for me was my wife with me when I was going to have surgery in late 2023, followed by cardiac tests/procedures to understand what is causing and how Atrilfibulation affects me. Having her with me was so incredible that it’s hard to put into words.

I remember waking up from a cardiac procedure and asking, “Where’s my wife? I want my wife. Where is she? I want my wife.” The comfort of her coming into the little waiting room was beyond description. According to the nurse, I wouldn’t let them do anything until they found my wife. I’m not so sure if that’s entirely true, except that I knew I wanted her faster than they were doing it. I am not referring or implying anything negative about the hospital staff, they were excellent.

Believe it or not, another huge blessing this year was recovering from my first surgical procedure. The blessing was that I recovered in my quiet country home, with the natural world near the Blue Ridge Mountains surrounding me instead of suburbia in Northern Virginia.

I could nap whenever I needed to do so or go for a short walk. Also, I got to enjoy watching the deer and foxes cross through the backyard. This was huge for me because I hadn’t had this before, and it honestly helped my recovery improve. I doubt my healing would have been as fast if I still lived in the hustle and bustle of suburbia. 

A blessing for me was my friendship with my “grandson.” First, I have no children or have been hiding a kid somewhere. However, a 22-year-old young man and I became friends after finding we had a lot in common. He nicknamed me “Grandpa” because of our age difference, and his grandfathers had passed away. As it turns out, he has some cardiac challenges of his own, so he was able to encourage me during my challenges. It was priceless because I’d never had cardiac challenges so it brought a lot of concerns. 

It has been a fun and interesting friendship as I see him growing into an extraordinary man. After not seeing him for three months, I recently got together with him and was amazed at God’s incredible work in his life.

An incredible blessing of a great boss turned great friend now. When I began working right after college, I was blessed with a part-time job in Christian radio. I was thrilled to get the job because I studied mass communications and worked part-time in radio for my college studies. Also, the station was part of the Washington D.C. radio market, so there might eventually be more opportunities.

Though my college professor had told my boss about my disability or the challenges I had, it was never held against me. She became interested in my health and expected me to do the same work as anyone else on staff. I liked that because it was how I wanted to live—and I still do.

After the radio station had changed owners and we all went our separate ways, we caught up again on social media. She is a reader of this blog and a great encourager. I have found this to be such a blessing.

I joined a CMT support group, although this introverted nerd initially didn’t see the need to do so. Since the group met via Zoom only occasionally, I figured I had nothing to lose but an hour or so of my time here and there.

As time passed, I learned that it is comforting to know you are not the oddball out; there are others with CMT. However, I would not wish the disease on anyone and am not happy that others have it. It does help my well-being to be part of this group.

My wife and I took a cruise with the Bill Gaither Homecoming Friends. I wanted to celebrate my 60th birthday and I am still walking by taking the cruise. Due to their age, it would be the last, or close to last, cruise Bill and Gloria Gaither would be hosting to Alaska. Since we had taken one several years ago and immensely enjoyed ourselves, we had to go.

Not only did we have fun together seeing Alaska, but we had nightly concerts of Southern Gospel music and some music events during the day.

When I was younger, my doctor told me I would be wheelchair-bound by age 40. I have been celebrating, since age 55, every five years that I am still walking. 

In October, I caught up with a friend I thought would never happen. But it did.  One of the hardest things about graduating from college was leaving two friends behind. Ed, Tony, and I had become best friends. It was something I would have liked to have never ended. Come to find out, it didn’t. 

I caught up with Ed a few years ago. His lovely wife, who was a great friend in college, too, had passed away. He caught up with me to share the news. My wife and I went to the Celebration of Life service to honor and remember her. After the ceremony, I told Ed that if he wanted to get away for a while to rest from all the stress, he would be welcome to visit us. We wouldn’t have to do anything or could do everything. It would be up to him. Fortunately, he took me up on my offer and came to visit within a few months. After that, we keep up by texting and visiting once a year. 

In December 2023, I came home from a dinner date with my lovely wife to find a Facebook notification email from Tony’s wife. At first, I thought, “Oh no, has something happened,” since I hadn’t heard from Tony in thirty-two years. He wasn’t much about keeping in touch, but I knew his wife through social media. She told me Tony was trying to catch up with me. He would be in Washington, D.C., for work and hoped to catch up with me. Needless to say, I was very surprised. We met for lunch and spent a few hours talking.

Fortunately, it didn’t end there. My wife and I were able to fly to Boise, Idaho, to visit Tony and meet his family. Ed drove up from Arkansas. It was an awesome week. We laughed, joked, played games, and put together puzzles. It was the most fun I had had with a group of people in a very long time. Memories of the trip still make me laugh with just a thought. 

Thanksgiving and Christmas were celebrated with a friend. After our families passed away, my father-in-law being the last a few years ago, my wife and I started to create our own traditions. This year, for the third time, we were joined for dinner on Thanksgiving and Christmas with a family friend who definitely made the season bright. 

Blessings are whatever you think they are, usually a positive moment or event in your life. I am not sharing these blessings to brag or make my life seem great. I learned to focus on the positive aspects of my life so that the negative aspects of CMT aren’t so concerning. After all, some of the pain of the disease and the constant new challenges can be a bit overwhelming. Focusing on and remembering life’s positive moments will make life happier.

Charcot-Marie-Tooth: Journey to New Arizona Braces, Part 4

Photo by ThisIsEngineering

Over the past few years, I have been writing about my journey to wearing braces and the transition to using the Arizona Brace design, which has improved mobility and quality of life quite a bit. You can begin reading the previous posts at Charcot-Marie-Tooth: My Journey to Using Arizona Braces. Why has this topic come up again? I need new braces again and will need them constantly for the rest of my life.

The spring season of 2024 began in all its excellent glory. All the plants were blooming; the Hummingbirds came back again, the Tree Swallows, Black-Capped Chickadees, Eastern Bluebirds, Cardinals, and Carolina Wrens were all swarming my yard with nearly crazy abandon searching and fighting for that perfect nesting spot. I was extremely happy to watch this unfold as this is what I enjoy most about the warm season, and even that of life, nature’s beauty, coming alive for another season. I watch from the sidelines far enough away so I do not disturb yet get my heart’s fill. Sometimes, I can sneak a photo or two of these beautiful birds.

The glorious return of nature meant more time enjoying walks with my half-crazy black labrador retriever. She has more spring to her step and more curiosity as she sniffs out the treks of the wildlife coming through. The funniest, or maybe cutest, part of all this is when she finds a bug or a frog that hops, she hops too.

I looked forward to purchasing annuals, perennials, and some trees before the season gets too far along and the Virginia heat settles in. However, I first needed to clean my gardens from the debris from the previous year. This chore was made easier this year with the installation of a new roof. As they laid tarps down to catch their debris, their removal helped the garden debris go quicker. 

As the season went on, I found myself nearly every waking moment, except days at the gym, planting perennials and annuals in my garden. I just could not get enough of it. Once the flowers were planted, I came to a stopping point where I would begin spreading 150 bags of mulch. It is a chore I enjoy yearly, as the end design looks excellent.

This year, as I was spreading bag no. 89, I realized some pain was starting in my left leg. At first, I don’t pay much attention to it. I am constantly having some pain somewhere in my body, so unless it is super painful or in an unusual or new spot, I don’t pay it much attention. That would be par for the course for me. It is not necessarily a good idea, so I don’t recommend Charcot-Marie-Tooth (CMT) patients doing this.

Unfortunately, this pain wasn’t giving up but increasing. When I walked my dog, I noticed it hurt more than usual. I thought that I might need a new set of Arizona braces. It seems that I need a new pair every few years. However, this time, three years have passed. Since it is summer, the warm season I dearly love, I didn’t want to take a few days to go to the doctor.

A little trick I have learned when wearing braces is to determine precisely where the pain is coming from in my feet. When I take the braces off, I immediately begin feeling my foot to determine the location of the pain. Oddly enough, sometimes, I can be in terrible pain, take the braces off, and still not find where the pain is. To my touch, it doesn’t react, nor does it react to my wife’s touch.

If I am not able to locate the spot where the pain originated, I will place a mole foam bandage in the general area where I think the pain originated. Surprisingly, this trick usually calms the pain down, and I can continue doing whatever I want to do.

About mid-summer, I decided to meet with my Orthopedic Surgeon and Brace Doctor to get a new pair of Arizona Braces. Over the years, I’ve developed a great relationship with them, so my stress levels and concerns about the appointment were less than usual. However, I have to admit that I had a few concerns about being able to make my feet and legs relax so I could get a better fit with the new braces.

When we arrived at the doctor’s office, I was treated like an old friend getting my yearly check-up. The doctor has a great sense of humor that makes the appointments fun and less stressful. He put me through the usual examination of looking at my feet, followed by a series of X-rays.

As the doctor examined me, we talked about the foot and toe surgery that could be done to straighten the arches and my hammer toes. The surgery is done on one foot, followed by 6-months of therapy. I’m unsure if the toes are done simultaneously with the foot. Once you are able, the surgery is done on the other foot and again, followed by 6 -months of therapy. The doctor indicated that with my positive attitude, he doubts I would need 6 months for either foot. I still do not opt for the surgery because I am walking and not interested until I am not.

The x-rays were a bit challenging because they wouldn’t allow my wife to take me in and bring me back. That made me a bit concerned or uncomfortable, as she tends to help me relax just by being there. However, the man assisting me did a great job, and the X-rays were done. Once the X-ray technician completed the tasks, they were uploaded so my doctor could examine them to make recommendations for me. As he read the x-rays and compared them to the 2021 exams, I heard him say, “Minimal progression in the feet.” My wife heard it, too. I was elated and nearly jumped up and down, hollering “yahoo,” but that could have damaged my ankles or feet. Either way, I was so happy to hear the news.

I was a bit surprised because it seems that CMT has progressed quite a bit this year. I’ve had more challenges walking, being tired, and so on. However, maybe it was something else. Also, I may have been able to slow the disease by diligently working out at the Wellness Center. After all, most of my exercises have focused on keeping my feet straight and firmly on the ground. Anything is possible.

And it could be God saying, “See, I’m still here!”

My brace specialist did her usual routine of wrapping my feet up and using plaster to form a cast on my lower legs, ankles, and feet. This time, she moved my feet in an attempt to straighten them, which should provide better balance for me. Knowing this was done, I was a bit concerned about the pain I would probably endure when breaking in the new braces.

The braces were ready for me to pick up a few weeks later. Concern and excitement were the emotions of the day. I was excited because the new braces could improve my quality of life and make walking more comfortable and easier.

As the doctor put my new braces on, she shared with me how to wear them—gradually breaking them in by wearing them only a few hours a day for the first week. My wife takes note of the instructions as she knows my concern about pain. When the specialist finishes lacing them up, she gives me the usual instructions of being careful and not running down the hall. I pay attention to her and take it easy as I’m unsure how much the adjustment this time will affect me.

At first, there was the severest pain in my left foot. We readjusted my foot in the brace as it wasn’t situated correctly. I walked down the hall again, feeling good. Surprisingly, it was the “straightest” walking I’ve done in my life. In many ways, I was very excited about wearing them as it meant I was beating CMT. On the other hand, the last time an adjustment was made for new braces, it was a painful experience. That, I am not looking forward to going through.

It is now three months later, I have had some pain during the break-in period. However, no where near what I was expecting. This time, the pain was in the leg muscles that seemed to be working harder than before. Also, a few challenges in my feet made life a bit uncomfortable for awhile. However, it was a reminder of God saying to me, “I am still here!”

To read the next post in this series, please visit, Charcot-Marie-Tooth: The Journey to Wearing Arizona Braces, Part 5, The Advantages

Charcot-Marie-Tooth: My BEST Tip!

“Great Smoky Mountains National Park, Tennessee”

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!

Charcot-Marie-Tooth? A Diagnosis Leads to Unhappiness and Discouragement

“Sad Man Thinking”
Photo by Ben White on Unsplash

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.

Happy Valentine’s Day!

When I was younger, Valentine’s Day sometimes was a lonely day. Sometimes, I would be dating a girl and we’d go out or do something. But, many times not.

I wish that I had realized back then what I know now or learned along the way. Valentine’s Day isn’t just about being loved or loving your girl or boyfriend. It’s a day to celebrate love.

The greatest truth I learned along the way is that God loves me no matter what. He is always there for me and will ALWAYS love me… even when I mess up really bad.

Thankfully, I will spend today with my wife and two boys. We believe in saying “I love you!” quite often and doing special things for each other all the time. Today will be pretty much a normal day but we will stress our love with a nice dinner somewhere.

I will thank God for the love of my family and friends today too.

I hope and pray that you have an awesomely blessed day!

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.