CMT – Isaiah Jacobs

Charcot-Marie-Tooth: Same Blog, Some Changes

I am writing this post to share a few changes I am planning to make to my blog. I hope you will enjoy them and share posts with others who have Charcot-Marie-Tooth (CMT), or any other chronic illness, for that matter, as you think may benefit.

I will be sharing some tips that might be odd or off the wall for some…but that’s what makes us unique. Almost everything will be holistic and natural; however, it should be described.

I have been holding back on sharing a few tips because I was concerned about offending friends in certain circles. Yeah, a few things might be against their beliefs or standards, but they’ve helped me to relieve myself of the many discomforts of CMT. They are not crazy, wild, or inappropriate. They are ethical, helpful, and honest, but a bit different.

I am not paid by some big eastern syndicate, or a western one, either, for that matter, to write these posts. My posts are meant to help you, another person with CMT or a physical disability, have a better quality of life. I have either done them or seen someone do them, but I always think it would help us to feel better. We face many challenges, and with each of us, these can be different, even within the same family.

At almost 63, I wish I had known and done some of the things I am doing now when I was much younger. Who knows, I might have been a hunk after all.

You are welcome to send me any tips or hacks that you find helpful. Who knows, I might share it with others, giving you credit, of course. I cannot guarantee that I will write about them.

I have a sense of humor, sometimes a bit different…my sense of humor starts out as a thought, which is something I know surprises my family and friends, and goes from there. It’s not my intention ever to be mean, to hurt, humiliate, insult, or harm anyone with my humor. If I unintentionally hurt your feelings, I apologize for it upfront.

Sometimes, those of us with CMT are challenged with our everyday challenges that can be a bit more frustratingly challenging than usual and definitely more than what people without it go through. The humor is intended to put a chuckle into our lives.

Also, I don’t know if you know that nearly every single day, all 365 of them, are national something or the other days. I might write a few posts about these just for the fun of it.

Cartoons or comics? Yup, I love them. If I can find some that I think would be humorous for us, with the creator’s permission, I will share them.

Product Reviews. Once I build up enough email subscribers to share products with that I believe can be beneficial to CMT patients, and maybe others with disabilities, I will share posts about them. A few things you need to know.

First, my standard for products that I would review are pretty high. I will not be reviewing something just to review it or get a sample product. The products must be well-made, not prone to breaking on first use, and not something I would not use myself. Safety will be a top priority, too.

When I was a dog writer, I remember reviewing a dog hair net. It was a great idea. It would prevent dogs from shedding in the house. Before your fancy party, you put it on the dog so those loose hairs wouldn’t fly into someone’s food. I was set to publish when I put the item on my dog for a photo. The look my dog gave me for doing this to him was hysterical. I laughed so hard my chest hurt. The dog forgave me, I promised to use better sense in products I’d review, and I didn’t humiliate my dog in a blog post.

Now that you know hair nets are out of the question, you need to know that each reviewed product is my personal opinion of it. My opinions are not for sale, so I do not receive any payments for the review. However, I might receive a small commission if you purchase an item through specified link. This would be explained in the post. The products reviewed will be ones I received for free from a vendor or purchased myself and want to share with you.

When I am ready to begin “Product Reviews,” you will see a page on the main page where you can read about my intentions and requirements.

Never have, never will. I have never shared email addresses with anyone without the permission of the email address owner- even in my personal life. So don’t worry: when I am contacted by a vendor or anyone else, I don’t share your email address or any personal information.

Also, I have a Substack site. I recently created a Substack page to share posts from this site with others.

The URL is Isaiah Jacobs, Living with Charcot-Marie-Tooth Disease | Isaiah A. Jacobs | Substack. With this site, I want to create a family-type, possibly one-to-one atmosphere. On this website, it’s a bit hard to do. Substack offers many options that will encourage that opportunity, even for an introverted nerd like me.

At the moment, my posts are free. Of course, you can always donate and buy me a cup of tea or breakfast somewhere, instead of a cup of coffee that I do not drink these days. In the future, I might add the option to pay for a subscriber with extra benefits. We’ll see.

Social Media. At present, I am not using social media to share my blog posts. Eventually, maybe sooner than later, I will.

You are welcome to share my posts on your social media to help others. You may not take credit for or edit any posts. Please credit me, Isaiah Jacobs, as the creator of the content. And I’d appreciate it if you could let me know when you share.

While there is no cure for CMT, there are things we can do to help us feel better, have better mobility, and enjoy our lives. I hope and pray that you enjoy this journey!

While you are here, please don’t forget to subscribe to my posts by email. It encourages me to write when I have several email subscribers.

I am always interested in learning your comments through the comment section on each post.

Charcot-Marie-Tooth: Happy 75 Years of Peanuts!

When I was young, I can remember reading the comics in the Washington Post. The newspaper had three to four pages of strips for readers to choose from. For me, I didn’t care much for most of the comics for whatever reason, but Peanuts by Charles M. Schulz always drew my attention. I can remember not understanding a comic or two, here and there. As I’ve grown older, I’ve gotten to appreciate his work even more. I think it was because the cartoon was so simply drawn and didn’t have much detail in the background, which added to the busyness of the strip. Either way, Peanuts caught my attention and kept it for nearly 60 years.

I would have liked to have met Charles M. Schulz, who was an incredible guy with a great sense of humor, and to have written the Peanuts comic strip for fifty years. Born on November 26, 1922, in Minneapolis, Minnesota, and grew up in St. Paul. From an early age, Schulz showed a strong interest in drawing, a passion he shared with his father, a barber. His first published drawing appeared in a Ripley’s Believe It or Not! Panel, when he was just 15 years old, featuring his family dog, Spike.

After serving during World War II, he returned home to Minnesota, where he began a career as a cartoonist. For a time, he worked as a teacher at Art Instruction, Inc., a correspondence school. In 1947, he began creating a weekly comic panel called Li’l Folks for the St. Paul Pioneer Press, which introduced some of the early character concepts that would later evolve into the Peanuts gang,

Peanuts made its debut on October 2, 1950, in just seven newspapers. The United Feature Syndicate chose the name against Schulz’s wishes, who preferred his original title, Li’l Folks. Schulz retained full creative control over the strip, writing and drawing every single panel himself for nearly 50 years. He was known for his minimalist style, which focused on the characters’ expressions and interactions rather than detailed backgrounds.

The strip features a cast of child characters, most notably the perpetually unlucky but good-hearted Charlie Brown, his introspective beagle, Snoopy, the bossy Lucy van Pelt, her blanket-toting brother, Linus, and many others. Through their daily struggles and philosophical conversations, Schulz tackled universal themes of hope, despair, anxiety, and friendship, resonating with a global audience.

At its peak, Peanuts was syndicated in over 2,600 newspapers in 75 countries and 21 languages, reaching a readership of more than 355 million people. Schulz’s work expanded into a massive cultural phenomenon, including Emmy Award-winning television specials like “A Charlie Brown Christmas” and “It’s the Great Pumpkin, Charlie Brown,” as well as books, films, and merchandise.

Throughout his career, Schulz received numerous accolades, including the National Cartoonists Society’s Reuben Award twice and a star on the Hollywood Walk of Fame. In 2000, he was posthumously awarded the Congressional Gold Medal.

Charles M. Schulz drew his final Peanuts strip on January 3, 2000, announcing his retirement due to his declining health. He passed away from colon cancer on February 12, 2000, just hours before his final original Sunday comic strip was published. His legacy continues to be celebrated, with the Charles M. Schulz Museum and Research Center in Santa Rosa, California, dedicated to his life and work.

When I was younger, like 10 years old or so, I can remember my parents, my brother, and I had a family tradition of watching the Peanuts shows on TV. We would make a bathroom stop, gather our snacks and drinks, and huddle around the TV together to watch “It’s the Great Pumpkin, Charlie Brown,” “A Charlie Brown Thanksgiving,” and “A Charlie Brown Christmas.” Once the show started, we weren’t moving from our seats unless we absolutely had to do so. Back then, the commercial breaks were only about a minute or two, giving the show’s sponsors their moment, unlike today, where you can almost bake a batch of cookies during the commercial break.

Sometimes I feel like I am Charlie Brown, where it seems like everything goes wrong whenever it can go wrong. Heaven forbid, something would go right when you want it to go right. But that’s, of course, not entirely accurate for me. If you know me, I’m pretty positive about life, but I have my Charlie Brown moments. Maybe I’m more like Snoopy—care-free, with a wild imagination, and adventurous. I have two close best friends, though they are a bit bigger than Woodstock, they are just as fun. And, there is definitely a lot of Schoeder in me. Though I have more than Beethoven in my classical music listening interests, going well before him in the Baroque Period and continuing for a few years after his life in the Romantic Period. Sometimes I think I have a bit of Lucy in me when I share thoughts about life with a young friend —except I don’t charge a nickel. Linus’s constant toting of a blanket for security is an example of how I use my service dog to help me through the difficult times with Charcot-Marie-Tooth and mobility issues. I don’t suck my thumb though. Maybe this is why I have loved Peanuts all these years: I can relate to the characters; they hit home and always seem to be looking for happiness.

I think one of the reasons I have loved Peanuts over the years so much is that it’s a clean cartoon. There isn’t any filthy talk, inappropriate innuendos, or adult drama prevalent in quite a bit of media. It focuses on the plights of the anxieties and observations of childhood with wit and poignancy, of which most of us relate. At times, like in “A Charlie Brown Christmas,” Schulz included the Bible Story of Christ’s Birth, which made me wonder whether he was a Christian. The thought was encouraging, as he always kept his cartoons in a family, maybe Christian, tone, so just about anyone who can read can.

Happy 75th Anniversary, Charlie Brown, Snoopy, Woodstock, Lucy, Linus, Schroeder, Sally, Peppermint Patty, Marcie, Pig Pen, Rerun, Franklin, and the rest of the gang! Thank you for being the bright, happy spot in my life!

Charcot-Marie-Tooth: The Journey to Wearing Arizona Braces, Part 5, “The Advantages”

A friend of mine suggested that I write a post specifically focusing on the advantages of wearing the Arizona Braces. Thankfully, she thought of this idea as it’s a good one. Before I share them, you can read the other parts of this series by following this link to the first post, Charcot-Marie-Tooth: My Journey to Using Arizona Braces.

After wearing the Arizona Braces for a few weeks to break them in, I discovered several advantages to this product. By advantages, I mean instead of going without braces, which is something I could do, but have learned not to do very often, for long distances, or most yard chores.

The braces support my ankles. My ankles turn out and twist when I walk, which puts me at a higher risk of spraining or breaking them. That is a trait of most Charcot-Marie-Tooth (CMT) patients. I guess that if I broke my ankle, it would be harder for a doctor to repair due to the deformity in my feet. Since braces provide support for my ankles, the concern that I will turn my ankle on every step is gone.

This definitely reduces the stress of constantly watching where I walk.

I tend to lose my balance. I can be walking or standing still, and all of a sudden, I lose my balance. It’s as if the legs lose their strength, especially when I am standing. However, the braces prevent that from becoming a nasty fall.

I can go the distance. In the early days of my life, I could walk for a considerable distance without any challenges. As time went on and CMT progressed, the distance began to shorten. While I can still walk almost a half-mile without braces, wearing good supporting walking shoes, I cannot go much further.

With my Arizona Braces, over time, not immediately, I have been able to walk nearly four miles with my dog! By not immediately, I mean that my dog and I worked up to it over time.

Considerably less pain and cramps in my legs and feet. Although there is pain during the break-in period of using Arizona Braces, eventually it goes away. Additionally, the severe pain in my feet, especially at the end of the day, which I had before getting them, is gone. I wish that the pain were permanently gone, but when I am on my feet for a very long day, I have pain, like most people do.

The great point to this is that I can be on my feet for an eight-hour day doing yard work and experience significantly less pain than I would without braces.

The Arizona Braces give me the strength to start my John Deere X590 and mow my yard. I have tried to start it without them, and it’s challenging to do so. Additionally, I can drive the mower more efficiently with more strength while wearing them.

The braces allow me to do yard work more easily. I have noticed this year, in particular, that the braces enable me to lift large bags of mulch to spread throughout my gardens much more easily than I can without them. Actually, I probably could not move or carry the bags without them.

I am more excited to do an activity. I am more likely to go and do whatever comes up with my braces than I would without them.

Twists, turns, and moving fast are now easy. While I don’t typically make fast turns or twists or move quickly on my feet, as I still pay attention to how I walk, I find these maneuvers to be easy to do. After I found myself doing a quick “about-face” maneuver, I realized I had done it successfully.

There are multiple options for braces. I recommend meeting with an Orthopaedic Surgeon and/or a Director of Orthotics and Bracing to help you choose the best option.

Charcot-Marie-Tooth: Happy Independence Day!

I almost let Independence Day pass without writing, as my schedule has been crazy busy this season. Between nearly 23″ of rain that has caused delays in finishing up my yard work, as I usually have everything planted and mulched by June 20, a new workout routine at the gym that’s requiring a bit more time, and a few other essential events in life, I have been overwhelmed. However, today has a history of good memories that I like to reflect on.

When I was a young boy, my parents would take us to my mother’s Aunt Mary’s house for a huge July 4th family reunion picnic. I had already been visiting with my grandmother before my parents came to visit. When we would head out to the celebration, I always wondered how many trains I would miss, as she lived near the busy Chesapeake and Ohio Railway tracks. How many? I will never know.

As we headed to the party, we always had a bit of a tradition of our own. Especially when we got to Pinch Ridge, WV. My father always felt the need to pinch my mother at that location. Later in life, I would do the same to my wife when we visited. I would get into the same trouble with my wife as my father had all those years.

When I was young, I didn’t appreciate the beauty of family reunions as much as my mother did. For her, it was a time to catch up with her parents, sister, brother, a few aunts, uncles, and cousins. She looked forward to it from the moment we got home from one to the time we attended the following year.

When I look back on those events, I realize that I was more introverted then than I am now. Don’t get me wrong, I’m still an introverted nerd and proud of it. I didn’t enjoy the reunions because there wasn’t anyone my age with whom I could play. I would enjoy a few hikes in the woods, watching for snakes at every single step, or a hike up to the top of the knob. My mother’s aunt lived on the side of a mountain. You could hike to the top of it by walking up the side. It was called a knob because their driveway circled it. When we got back to grandmother’s house, I would look up and down the railroad tracks, hoping to see a train or two to make up for missing the whole day. What I didn’t know at the time was that most, if not all, trains weren’t running due to the holiday.

As I’ve grown older, I’ve realized the importance of family, even when you’re an introverted nerd and want to sit by the railroad tracks all day, waiting for the trains to roll by. Family is more important than that. I realized that fact many years ago and have enjoyed visiting those relatives still living. Thankfully, I spent time with family closest to me before they passed away, and I couldn’t get together with them.

My mother’s side of the family is where I inherited Charcot-Marie-Tooth (CMT). Though I didn’t understand, or care about all that, as life was an adventure of exploring, as it should be for a young boy. I remember the family sharing their aches and pains, dealing with the disease. At the time, it wasn’t comforting to know that I could have to deal with that. However, that’s not necessarily true. CMT has various strains that affect people in different ways. Even if my brother and I had CMT Type 2, our symptoms weren’t necessarily the same. In the back of my mind, I think hearing what others had to say about the disease was an encouragement to fight against it.

Today is the 249th birthday, Independence Day, of our country. Remember to be thankful for the country and freedoms we have. Have a blessed fourth!

Charcot-Marie-Tooth: A Support Group Picnic

I spent a recent Sunday afternoon at the Central Virginia Charcot-Marie-Tooth (CMT) Support Group picnic. That isn’t something I would normally do, much less want to do. However, I joined the online Zoom meetings about a year or so ago. I was thrilled to find a group that meets online, with any in-person meetings held in the central Virginia area. I had wanted to participate in the Northern Virginia, but driving to the meetings was too much for me.

However, for me, attending an event online is far easier than attending one in person. Mostly because I am an introverted nerd. I attempted to attend last year’s picnic event, but the weather was too hot for my wife and service dog. If one of them can’t go, I won’t. So, I was looking forward to the picnic.

I was asked to speak to the group about the benefits of a Service Dog. Since I have had one for many years now, I felt qualified to discuss my benefits. I’ll share these in another post.

My wife, Abby, my service dog, and I gathered a few things and piled into our car to head to the picnic. We stopped at the local Popeyes for chicken and some sides to share with others. The smell of fried chicken filled the car as we headed to the event. I was tempted several times to pull the vehicle over and pig out on the chicken, but I didn’t. I kept going.

We arrived at the picnic, had lunch, and I discussed the benefits of having a service dog. The food was delicious, the company was awesome, and my talk went well. A few others with CMT are considering service dogs. As I age, I have found having a service dog priceless.

What I didn’t expect was the good time we all had discussing our challenges with CMT. It wasn’t a negative time, as facts are facts. We shared what’s wrong, what works, and what doesn’t. Several methods of treatment work quite well to help with mobility and overall feeling good, which can help with a better quality of life.

While I do not like to see other people suffer, the time spent helped make dealing with my physical challenges a bit easier. I guess it’s because I know I am not the only one.

To learn about support groups or other events for CMT patients, you can visit the Charcot-Marie-Tooth Association.

Charcot-Marie-Tooth: Happy Mother’s Day

It seems the holiday snuck up on me this year. Easter was later than usual, and I’ve been busy doing other things that have kept me busier than normal. It seems like the days and weeks are going faster than ever.

Either way, I didn’t want to miss the opportunity to wish all the mothers on my email list a happy Mother’s Day! May your day be filled with many blessings.

My mother went on to heaven in early 2011. Though it’s been fourteen years since she passed, I still miss her especially around Mother’s Day and her birthday. Of course, there are other occasions, but those are the biggest reminders.

My mother had Charcot-Marie-Tooth (CMT). She was a huge encourager for me to keep going and never give up. I don’t remember her ever being negative about it, so maybe that’s part of where I get my attitude.

My mom was a stay-at-home mom. At the time, I didn’t think much about it, as almost every mom seemed at home. She enjoyed raising her boys and was there when I needed her. I remember her doing that during my college and career years. She had a knack for letting go of some of the “mom” things that I wouldn’t appreciate after I became an adult, and she became a friend. She never let go of sharing what she thought was “best” or “good” for me.

My mom instilled in me a creative side and a love for gardening and being outdoors. She loved photographing, painting, planting flowers, and caring for them.

Mom was a devout Christian, too. She never wavered in her beliefs about God, Jesus, and the Bible. She volunteered in many areas of the church, including leading the youth, which I did not like at the time. Her Christian faith was a strong part of her and how she was. She wasn’t one to go to church on Sunday morning, then be something else the rest of the week.

I could write pages about my mom, I’m sure you could too. I hope you have a blessed day with your mom. If not by being with her, by a phone call.

Charcot-Marie-Tooth: May You Have a Blessed Easter!

“He is not here, for he has risen, as he said. Come, see the place where he lay.”
– Matthew 28:6
May you have a Blessed Easter!

Holy Week, Good Friday and Easter is always a humbling time for me. Think about it.

As I have lived my life, I have accomplished the stuff that most men do. I married a beautiful woman, raised a few furry children, worked a career, and retired to travel and gardening. I am an average guy going through life.

What humbles me is that I cannot fathom why someone would give their life for me so that I could spend eternity in heaven should I choose to believe in Jesus and follow Him. But Jesus did exactly that. He was crucified on a cruel cross and rose on Easter Sunday to conquer death for our sins.

If you want to learn more about what Jesus did for us, please visit To Know God.

Charcot-Marie-Tooth: Hearing God’s Whispers by Mabel Matthews

Disclaimer: Though I mention a product in this post and share a link for you to purchase, I do not receive any compensation. Also, I did not receive any free product as compensation.

About a year or so ago, my sister told me about an opportunity to write my testimony for a book that was soon to be published. I read the requirements for sharing my story to find it a good fit.

My journey fighting Charcot-Marie-Tooth (CMT) has been an ongoing battle for sixty-two years. I give myself a bit of a break because I didn’t know in my childhood nor pay attention to it in my youth, so I have been actively fighting it since my early-twenties. It still feels like quite a long battle.

At the beginning of my fight, around age 22, the Lord God spoke to me in a way I would never forget. The few minutes in my college day would shape my life forever.

In her new book, Hearing God’s Whispers by Mabel Matthews, I have been blessed to share the story about God speaking to my heart about CMT and “He will be my strength and ability.”

The book is a collection of testimonies and stories about how God has spoken to people of various backgrounds, providing insight into His Workings through many people.

The book is divided into four chapters: Hope, Healing, Obedience, and Spiritual Clarity. Each chapter addresses a specific topic that the reader may be going through or seeking God’s Guidance or Encouragement. Reading “Hearing God’s Whispers” might open your eyes to when God has spoken to you, whether you were aware of it or ignored it.

I shared my testimony of God’s Love for me as I live with Charcot-Marie-Tooth not to say, “Look at me!” but to say “See what God can do!” May this book, my testimony, or someone else’s be the words you are looking for from God.

If you would like to obtain a copy, please visit Amazon. Available in hardback or Kindle.

If you are looking to know God, or curious about the Christian Faith and becoming a Christian, please visit To Know God.

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: Happy Birthday, Wolfgang Amadeus Mozart

If you have been following my blog, you’ll know that classical music one is my favorite forms of music. If not, you know now. I acquired a taste for it in my younger years since my father played it around the house, and I liked the humorous announcers on the local classical station. It was a gem of a station that made classical music humorous and fit into everyday life. Some of that, I learned after I returned home from college where I had taken a course in music history.

What I find interesting about the classical music world is its celebration of the birthdays and deceased days of composers who are basically, well, dead. The greater the composer was, the more of a celebration! Such is the case with Wolfgang Amadeus Mozart, who was born in 1756. I wasn’t there for the occasion, but I have read about it in reliable sources. One of the celebrations I attended was in 1991, when the classical world memorialized the 200th anniversary of his death.

Today, Mozart was born in Salzburg, Austria, and would have been 269 years old. He died in Vienna, Austria, after living a short 36 years—an Austrian composer who became known as one of the greatest composers in Western music. Almost everyone, if not everyone, is familiar with at least one or two of his works through concerts, films, and even television commercials. He was born a genius who started writing and performing music at an early age. Unlike other composers, he composed in all the music genres of his day, excelling in them all. His work made him seem the most universal composer.

In 1990, I had the opportunity to travel to Europe with a buddy. I wasn’t as much of a classical music lover back then, so I didn’t plan my trip with a music focus to it. However, I managed to visit the birthplace of Beethoven in Bonn, Germany, and Mozart in Salzburg, Austria. As I toured each place, several street musicians played classical music, bringing the town to life. His birthplace and his home were very humble. It was one of those trips that I have been thankful that I took at a young age when I had fewer challenges with Charcot-Marie-Tooth. I could do it now, however, there would have to be much more planning, including learning what type of surfaces I would be walking on. Today, I would need my braces to enjoy it; even then, it would be painful. I remember touring the Fortress Hohensalzburg (the castle in the photo above), which sits on a high hill overlooking the city, where walking was a challenge. My buddy and I enjoyed Mozart’s music throughout, and we enjoyed the view while eating a snack at a little cafe. Obviously, most tourists came to the town to listen to his music and learn about the greatness of Mozart.

How do you celebrate the birthday of a deceased composer? You could have a birthday cake, crumpets, tea, and coffee. Gifts aren’t required. Cakes or cookies aren’t either. In my case, I won’t do anything like that as I do not need the sweets and I wouldn’t know what to buy a dead person. However, I will listen to hours of Mozart’s music on compact discs and streaming services.

Saturday, I began my celebration of Mozart’s birth by listening to his symphonies and concertos, which are popular these days. Yesterday, I listened to organ music and a few masses. After all, Mozart wrote 600 works of music, including symphonies, concertos, operas, chamber music, choral music, masses, and a requiem.

I will toast, with a huge glass of milk, to a remarkable composer who helped me find the beauty in classical music. Cheers! Happy Mozart’s Birthday!

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Category: CMT