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.
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.
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!
Are you familiar with the age-old idea of making New Year’s Resolutions, where you list ways to improve yourself and use New Year’s Day as a starting point? I’m at it again this year.
For many years in my younger days, I made New Year’s Resolutions and did my best to keep them. This usually lasted until around the 20th or so of January. Amidst all that, I was constantly restarting the New Year, meaning restarting the resolutions on the 23rd meant that it was the New Year for the resolutions. It got old along about February 3rd. I did my best to keep whatever resolutions were left to keep. Along about June – July, I would take a trip to the beach where I would walk and evaluate my progress.
New Year’s Resolutions are good as long as you don’t try to conquer too many things all at once. In other words, I always managed to fail when I tried to reinvent myself by using a starting point of January 1. Eventually, I changed the New Year’s Resolutions to New Year’s Revelations because it would be a revelation if I really managed to make the changes.
This year, though I know it is hard to improve on perfection, I have decided to make some revelations for 2025. So here we go:
First and foremost of importance, I want to read my devotions and Bible more regularly. As I have had to change my morning routines more than a few times, and have had some battles with fatigue and exhaustion this past year, I found myself not reading my devotions and Bible as often as I should. Unfortunately, the old brain is forgetful, and it happened. Recently, I reminded myself that my tablet has access to devotions and my Bible. I have it with me everywhere around the house. So, there I go.
Second, read as many books as possible in the year, aiming for at least twelve. A few years ago, my chiropractor told me that Charcot-Marie-Tooth (CMT) can affect the brain. I haven’t taken the time to read up on this yet, but it concerned me as he seems to know quite a bit about the disease. He suggested reading more often.
My goal for 2025 is to read a book a month. This year, I plan to list what I read, as it could be that I am already reading more books than I realize. I tend to finish one and go on to another.
Ideally, I would like to read through my Bible Prophecy library books by July. That, however, would be impossible for even the fastest and most intelligent readers unless they had all day and night to do nothing but read. That being said, I plan to read as many of these books as possible this year.
Third, listen to more music and watch less TV. In early 2024, I got back into my favorite classical music hobby. I had a medical procedure in late 2023 that caused me to have to rest for three weeks. When I came home from the procedure, I went to bed to rest. I had my tablet when I started thinking about what I enjoyed and could enjoy while recuperating. Though I hadn’t waited until the last minute to prepare for this, I did a web search on classical music. I had forgotten how valuable the internet could be for someone interested in music. So, the exploring began.
I discovered the wonderful world of streaming concerts from around the globe via Medici.TV, Symphony.Live, and Stage+. As a result, I found myself enjoying my CD collection and cataloging purchases as much as I did years ago.
Over the past few months, I have left the TV off and played classical CDs in the mornings while writing or doing my online church work. Unexpectedly, but not surprised, I found that my stress levels went down as I didn’t have the TV noise on as much. Also, there were plenty of moments when the music was so sublimely beautiful it was incredible. That alone was worth keeping the TV off.
I will continue my workouts in 2025, possibly adding a day and a routine. About a year ago, I started working out at a Wellness Center in my town. As a result, I have increased my strength, improved my confidence, am feeling much better, and even made a few friends along the way.
I will continue my workouts in 2025, possibly adding a day and a routine. About a year ago, I started working out at a Wellness Center in my town. As a result, I have increased my strength, improved my confidence, am feeling much better, and even made a few friends along the way.
However, I am not much on working out. I go twice a week because I know that I will feel better if I do so. If I do not work out, the pains of CMT will become annoying again, and I don’t want that. It would be good for me to workout three days a week. In these winter days, I would have time to do it. When the weather changes to spring and the outdoor chores return, it will not be possible. So, am giving thought to adding the third day.
Also, my exercise specialist gave me a list of exercises I can do at home to firm up the old man’s gut. I am going to start doing them.
And finally, there have been too many times in 2024 when I neglected to walk my dog. It is a great exercise for both of us. She and I love getting outside and exploring. My goal is to make walking her a priority.
By the end of 2025, I should be even more perfect than I already am. I think these efforts will be worth it!
Have you ever noticed how quiet it gets around 8:00 p.m. or later on Christmas Eve 2024? It’s an eerie quiet that overcomes the area, wherever I happen to be. I like to go outside on Christmas Eve and listen. It seems to be saying that the Christ Child is coming.
It’s Christmas Eve morning, and I’ve got the day off. Retired and have a day off? Yes, it happens. I wouldn’t enjoy retirement if I sat around all day doing nothing. I sometimes wonder how I got anything done when I was working. Anyway, most days, I have chores, appointments, the gym, my dog, and the list seems endless. However, today, the gym was open for only four hours. I knew by the time I got up, had breakfast, and cared for the dog, I’d only have a few hours to work out. Since it’s Tuesday, I don’t usually plan a lot of chores for after the gym since it usually wipes me. So it’s a day off for me.
Thankfully, I saw this day of “doing nothing” coming and did a bit of planning. I was thinking about taking my dog to the Shenandoah National Park and surrounding area for a day of exploring. However, the weather forecast of freezing rain and ice helped me decide to stay home. The mountains usually get snow and ice more often than what we do.
I wasn’t too sure about the trip to the mountains to start with because it’s actually refreshing not to have to be motivated, as Tuesday mornings are usually my busiest mornings. I decided I would enjoy a day of walking my dog; gravel roads and trails are easy to navigate in the icy weather, listening to my classical music collection, mainly the Christmas CDs, writing, and maybe reflecting on Christmas’s past.
The morning is quiet, and music from the Baroque era is playing on my stereo system. Something about the tranquil music is creating a calming space in my studio. I find myself thinking a bit about Christmas’s past. A good part of me misses my parents. It’d be nice to have them around to enjoy. It’s funny; some of our family celebrations in my married life seemed so annoying. Everyone had their quirks. One family member thought the entire world revolved around him, another always wanted their traditions and wasn’t willing to budge, another would say they’d be there but never did show up but sent lovely expensive gifts that meant little since he wasn’t there, and then there was my dad. He was the quiet one in the corner, enjoying the festivities with little to say. I think, “That’s where I got it from.” Yeah, all the quirkiness was often a pain as we tried to work with them all so they’d be happy. However, looking back, it was what made each of them unique and created the traits within my wife and me to be the people we are. And, yeah, as crazy as my parents might have driven me over the years, I would love to have them back to enjoy Christmas. However, they have gone on to heaven, and I’m sure they are celebrating the day. Death in this life is inevitable, and we don’t know when. Get together with those you love as often as you can. Even if they’re a pain. It’s only for the moment.
A favorite memory of my in-laws was their insistence not to shop for Christmas or any other special day. If my mother-in-law were out somewhere and saw something she thought I would like, she would buy it. Most of the time, the gifts were in the form of a check. A sizeable amount, too. I loved it. Some would say, that’s tacky or not very thoughtful, but I loved every one of those checks and my especially in-laws for doing it. Why? It said they cared enough to let me get something I know I would like. Though I made a good salary, it was for our family expenses, mortgage, car loan, and necessities of life. I budgeted a small monthly amount that I could spend frivolously, there were things I would like to have that wasn’t in the budget. I would save the checks they gave me to purchase that. Frankly, you’d have to know me well to know what to buy me for a gift. Very few people could do that. Anyway, when I purchased something with their gift money, I shared it with them so they would know what was bought.
I have plenty of Christmas memories of my parents. Among many, my favorite is the year that I got a bike. Getting the bike wasn’t so much the memory as the events leading up to it. My brother and I had a habit of getting up on Christmas morning the second our eyes opened. Sometimes, that was very early. Earlier than o’dark hundred! This particular year, my father stayed up most of the night helping Santa Claus assemble two bicycles. Of course, the instructions were so clear that his adventure became more challenging than a father should have on Christmas morning. At precisely o’dark hundred, my brother and I ran to my parent’s room to wake them up. Even though Dad had just gotten into bed, probably not a few minutes earlier, he went along with the early morning festivities. I didn’t know this story until later in life when my parents shared their funny Christmas stories. Dad never complained about the lack of sleep or anything like that. He was happy to see his boys get the bike from Santa Claus.
The Christmas season has changed quite a bit as I’ve gotten older. My parents, brother, and in-laws have gone on to heaven with my father-in-law being the last, a few years ago. My wife and I will exchange gifts along with our furry children. Later, a friend will join us as we go to a restaurant in Northern Virginia to celebrate the day. It’s a nice escape from the house, so we aren’t always looking for family members to show up. Next year, we may try a traveling adventure.
For me, Christmas is about celebrating the Birth of Jesus. God gave us the Greatest Gift ever of His Son Jesus. He came so we may have eternal life with Him in heaven if we believe. To learn more, please visit To Know God.
I will head outside tonight to listen for the quiet I mentioned earlier. It seems a bit different since we moved to the country where quiet is a part of my daily life. However, you can see the stars in the vast sky, and that seems to add to the beauty of Christmas.
A part of my life, especially since I was diagnosed with Charcot-Marie-Tooth (CMT) has been to be thankful. It’s been a deliberate focus that makes me think about the aspects of my life for which I am grateful. In the early days of the diagnosis, I had a hard time being thankful, especially in light of being diagnosed with a rare, non-curable disease.
I am thankful for God and His Love for me. It is a great comfort to me to know God loves me and is in control of my life. God has forgiven me of my sins and wrongs, giving me eternal life with Him. I am extremely thankful. If you would like to learn more, please visit To Know God.
God guided my steps in life to various medical and holistic professionals who have helped me feel better and have a better quality of life. I would probably feel more of the effects of the disease, if not all of it, head-on if it weren’t for these groups of people.
There are more than a bazillion times that I have been thankful for God’s Love for me and helping me in my lifetime battle with CMT. I would not have been able to make it this far without His Help.
Life is a gift; be thankful. Every morning, I am grateful to see my beautiful wife, cat, dog, and the sun shining. I am grateful to be alive and to go about my day doing what I love.
I might not be able to enjoy every single activity that my heart desires because of CMT, however, I can enjoy many of them, such as traveling, so I get out there and do it. And, sometimes I live vicariously through other’s experiences.
I am very thankful for my wife. My life would probably be considerably more boring if I hadn’t married her. We recently celebrated twenty-eight years of marriage. In that time, we’ve had life’s challenges, traveled the world, worked through our health challenges, and our parents’ illnesses and passings.
I dare say that if it wasn’t for my wife, I may not be as healthy as I am. She has encouraged me when I was discouraged. She’s made suggestions for doctors or treatments or to try something another way that might work better.
I am thankful for my “grandson.” A few years ago, a young man cared for my animals while I traveled. When he came by to be paid, we spent nearly four hours talking. We found we have quite a bit in common. He nicknamed me “Grandpa” because of our age difference. We get together once a month or so to catch up on everything! Usually, we get together and can’t stop talking, so we’ll be there for three or four hours that will easily seem like only thirty minutes.
I look forward to our time as I usually learn about God’s blessings to him.
I am thankful for my two best friends. In college, I made friends with two guys I will never forget- try as I might. They became my best friends and helped me considerably with the diagnosis of CMT. God put them into my life for that reason.
A few years ago, I caught up with Ed after his wife had passed away. I attended the celebration of life. Afterwards, I told him he was welcome to come visit and get some rest after losing his best friend/wife. He took me up on it, and I am thankful he did. We reconnected like we just saw each other last year.
Last December, I was surprised by Tony who was coming to Washington D.C. on a work project. After thirty-two years, we spent three hours chatting at a Cracker Barrel. It was priceless.
In October of this year, the three of us got together for a week at Tony’s house, where he lives with his wife and children. The week was priceless. We laughed, assembled puzzles, and saw parts of Boise, Idaho, and Oregon. The Idaho Reptile Zoo and the World Center for Birds of Prey were favorites that I plan to visit again.
I am thankful for my sister. It’s nice to be able to pick your family. I have a friend who has been awesome over the years. We share stories about how God has been caring for us or how we see His work in our lives. She gets together with my wife and me occasionally, and it’s always a lot of fun. Often, her comments about God in her life help me to keep focused on Him too.
I am thankful for family and friends. I have a few family members and friends that I am very thankful to have them in my life. They have been loving and taught me many things to shape me into the man that I am today.
I am very picky on who I call friend. The friends in my life are few but they are because we have managed to develop a Godly relationship that has been encouraging to both of us. There is no pretense. No gossip. No fluff-fluff.
Last but not least, I am thankful for my readers. It is for you that I write stories with tips about living with Charcot-Marie-Tooth. I am grateful that you took the time to read my posts and comments.
My list of thankfulness could go on forever. However, I will stop here and wish you a blessed Thanksgiving.
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!”
The weather has been quite warm this fall, making it feel like late summer rather than November. As I started wearing my sweatpants shorts, which I aptly named my winter shorts, the weather got warmer. Maybe I should keep them out all winter to keep the severe weather away?
Once again, it is time to turn our clocks back one hour. Daylight Saving Time officially ends tomorrow morning, Sunday, November 3, at 2 a.m. Don’t forget to set your clocks back one hour before bedtime tonight.
My friends, and probably especially my wife, aren’t going to believe this. Before I say it, I’ll let you know I am well. Here it is, I think for the first time in my life I am ready for the time change and the cooler and colder weather. I’ve never liked the fall time change because it always brought the cold weather with it. Though it’s warm this year, the cold won’t be far behind. Plus, there isn’t much I can do outside this time of year.
Why am I ready? No, I haven’t hit my head or anything. It’s been a very busy, warm weather season. For some reason, it seems to have been busier than previous years. Mowing, planting, mulching, deadheading, and every other task in the garden has been a blessing from God. I love every second I get outside enjoying His Handiwork in creation. Traditionally, this is the slow-down time of year for me. This year, I am ready.
I look forward to reading books, taking online courses, and organizing my classical music compact disc library. Oh, I am even looking forward to going through stuff in the garage and basement storage… and maybe a few naps along the way, too.
Do you look forward to the time change? Are there tasks or chores you have planned for the colder weather? If so, share in the comments below.
Don’t forget to change those clocks! Sunday’s coming!
September is CMT (Charcot-Marie-Tooth) Awareness Month. The annual campaign encourages those with Charcot-Marie-Tooth (CMT) to share their experiences with the disease through social media.
Besides this blog, I haven’t shared with others about CMT. This is mostly because I tend to maintain my privacy for many reasons, which I will share in a separate blog post. However, it’s probably time for me to start sharing more so it can help others.
However, I am an introverted nerd who doesn’t care to share about my CMT on social media because it’s too personal for me to do so. Typically, I share general stuff about myself. I’m not saying that sharing on social media is bad; it’s an individual choice. If you decide to share about CMT on social media, please include the hashtags #letsbeatcmt and comment below so I can enjoy your post.
I recently decided to find a primary care physician and a cardiologist near my home instead of driving a considerable distance to suburbia for appointments. Since CMT is a huge part of my health and daily life, I made sure to share my health issues with my doctors. I was pleasantly surprised to discover that my primary care physician in my small town knew more about it than my suburban doctors.
Another important time that I shared about CMT was when I decided to work with a personal trainer at a local wellness center. Since the trainer would create a workout routine to help me feel better, she needed to know everything about me. I explained CMT as best I could, including my type, what I live with, and the CMTAUSA website. This was very helpful to her as she was better equipped to create a workout for my needs.
As I have worked out in the gym over the past year, I have had many questions about my feet and walking. I took time to explain CMT and its effect on my abilities. It turned out to be some quite interesting conversations.
About a year ago, I decided to find a massage therapist near my home instead of taking that suburban drive I mentioned earlier. When I was looking for someone and when I found someone I was going to use, I informed them about CMT.
As you can, share about CMT, your experiences living with it, and any tips you think could help someone else. Please leave any comments you’d like to share in the comments section below.
Although I am an introverted nerd, I am slowly beginning to realize that sharing what I know about CMT and meeting others who have it is comforting and beneficial. I recently began attending a group meeting via Zoom.
If you are unfamiliar with it, the Charcot-Marie-Tooth Association is an excellent website for learning about Charcot-Marie-Tooth (CMT). The CMTUSA has done extensive work in research about the disease. Visit their website to learn more about it.
