CMT – Isaiah Jacobs

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

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!”

Charcot-Marie-Tooth: September is Awareness Month

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.

Charcot-Marie-Tooth: A Tornado?

“Storms” Photo by Johannes Plenio

To my surprise, my quiet Sunday ended with a tornado passing within a mile of my house without my knowledge until a few days after it was over. Unfortunately, yet fortunately, this exposed a flaw in my emergency preparedness, sparking concern for other storms.

Sundays are my favorite day of the week. I attend church in the morning, have lunch, and take my afternoon nap. That week was a little different, as my wife was out of town attending the Gaither Homecoming Friends concerts in Gatlinburg, TN, with a lady friend. I stayed home with our pets. Instead of eating out for lunch, I grilled myself a steak and shrimp dinner after my nap. Dinner was delicious. It was followed by an evening reading on the deck, one of my favorite pastimes in the warm weather season.

However, not too long into my reading, I noticed thunderstorms approaching the area. I heard them off to the west, but they didn’t seem severe, nor did they appear to be coming this way. There weren’t any weather alerts out, nor was I hearing a lot of thunder. Also, sometimes storms follow the mountains and go north, never really affecting our area. So, I continued reading and listening to my music.

However, my dog Abby was hearing or sensing something I was not. She normally isn’t concerned about thunderstorms and doesn’t want to go inside if it’s raining, especially if deer are in the field. She approached me at my chair and then went to the sliding glass door as if to say, “OK, it’s time to go inside. Let’s go!”

It was almost 9 p.m., so I decided to head to bed and read for a while. There was no sense in getting into computer stuff or turning on the TV because there would likely be a power failure as the storm went through.

As I curled in bed to read, I opened the window and turned on my music. It wasn’t long before the bedroom door started shaking. I thought the storm pushing through was causing it, so I closed the window and went back to my reading. I became concerned that maybe my cat needed something, so I went to check on him. As I did, my dog headed to the hall bathroom and hid. That was unusual.

During this, I missed any weather alerts about possible tornado activity in our area. However, my best friend in Arkansas didn’t—he immediately texted me about a tornado warning. With only a few minutes left of the warning, and I didn’t hear any unusual weather, I went to sleep.

The following morning, I learned that I had missed all of the weather alerts the National Weather Service sent out. Why? Since I have several apps on my phone, they alerted me to the incoming storms and a tornado warning. I didn’t receive the alerts because I do not sleep with my phone. Charcot-Marie-Tooth (CMT) causes sleeping issues for me, so I leave my phone charging downstairs so I’m not disturbed. The tablet that I used for reading was with me; however, it didn’t have any weather alerts.

As a CMT patient, I believe I should be extra prepared. Whatever we can do to prepare for an emergency or stressful situation is best. The next day, I took some time to look at weather alert apps and radios.

I found an app created by the American Red Cross that looked to be perfect for alerting me to bad weather. I installed and programmed it on my tablet to alert me for weather specific to my area. That evening, I learned that the app worked great as tornado watches were issued by the National Weather Service.

When the weather radio arrived, I programmed it for my area, set it up in a central location of my home, and let it go. I bought a Midland product because I’ve had good luck with them and heard good remarks about them. It was set up in the family room for about a week before I had a chance to learn if it worked and if I programmed it correctly.

If you live in an area with severe storms, such as tornados or hurricanes to name two, you should be as prepared as you can. Even though I do not live in those storm-prone areas, I do a few routine things to help me should there be an emergency. Every night, I place my shoes, braces, and extra shoes in a specific area of the house. When I use them during the day, they are returned to their spot. That way, I can grab and go. Clothing is placed in a spot where I can grab them, too. Also, my phone is always left charging in the same place. Grab and go, should I need to do so. My dog’s leashes are kept in certain locations in the house, so there is no last-second searching. These may sound a bit trivial or routine, but it would help in an emergency. For me, fewer steps to finding something is better as it means less pain in my feet and less anxiety in an emergency.

Charcot-Marie-Tooth: Happy Father’s Day

“Praise him with the sounding of the trumpet,
praise him with the harp and lyre,
praise him with timbrel and dancing,
praise him with the strings and pipe,”
– Psalm 150:3-4

This Father’s Day, my father has been on my mind quite a bit. Granted, when he was living, I celebrated the day with him and did other things, too. But this year, I miss him quite a bit.

One factor in my life that may have triggered memories is that I listen to classical music more these days than I have in recent years. While he blessed my life in so many ways, he was known for his love of music and often had it playing around the house.

In my young adult years, I began a hobby of collecting classical music on compact discs. Dad and I used to go to Tower Records together and shop for new recordings or ones we didn’t have in our collections. He always found a few, and I found more than that. Then, we talk about what we bought and, sometimes, why we did.

Little did he know, or maybe he did, that sharing his love of classical music would be of invaluable help to me in my battle of living with Charcot-Marie-Tooth (CMT). I cannot count how many times I have had classical music playing, whether on radio or compact disc, and nowadays streaming, and I have found relief. I remember a few times when the pain and stresses of the disease were considerably bothering me, and I’d hear a Mozart Piano Concerto, which seemed to melt those issues away. Or, a piece by Handel from the Baroque period would do the same.

Recently, my music system had issues playing my music. The company did a poor job updating the app used to stream or play compact discs. I wasn’t happy. I was frustrated, to say the least, because I couldn’t play music wherever I wanted. I have two portable speakers that allow me to play music outside wherever I am. This time of year, I enjoy playing music while working in my garden or reading on my deck at day’s end. The problem was corrected, but it confirmed what I knew: I love my music.

As I play music and do chores around the house, I think of my father. He would be doing the same thing- listening to music.

My father taught me the most important things in life: God, the Bible, Jesus, and the church. He took us to church every Sunday morning and night, Wednesday night, revival services and special events. Doing those things doesn’t make you a Christian, nor do they guarantee that you will go to heaven when you die. You must accept Jesus Christ as your Savior to go to heaven.

As he lived, he taught me about being a Christian by being a living example, the enjoyment of classical music, and so many other things that I cannot even begin to list. I miss him today, probably more than usual. But, that’s okay, as I wouldn’t bring him back from heaven for any reason. Occasionally, I enjoy the thought that he is finally leading the choir of his dreams- a heavenly choir where there are no parts or instruments missing. It’s all to the glory of God.

May you have a blessed Father’s Day. Hug yours. Call him.

Happy Mother’s Day!

I would like to wish the mothers and grandmothers who read my posts a very happy Mother’s Day! May you have a blessed day with your family.

Today is a holiday that is not very popular with me since my mother passed away twelve years ago. I’m not sure if it’s the holiday that causes me to miss her as it is the season.

My mother was an avid gardener. She loved planting flowers and other plants in her yard. When I was around 7 years old or so, Mom planted a vegetable garden behind the house. It was pretty tasty to eat the vegetables she had grown. While I haven’t taken on her interest in growing vegetables, I have gotten into planting flowers. I have to laugh, as there hasn’t been a season since her passing that I haven’t wanted to call her for advice.

Recently, I had an opportunity to sit in a meeting to hear a lady from Canada discuss her life with Charcot-Marie-Tooth CMT). She discussed having quite a few challenges that were quite a bit like what I have dealt with over the years. Something she said reminded me of my mother’s love for me. My mother never hesitated to let me know she loved me. As a young man, that wasn’t exactly what I wanted to hear back then. However, as I look back and think about it, her expressions of love often helped me to deal with the headaches of CMT. I will never know how much she really knew about it since at the time, there wasn’t much written and we certainly did not have access to what was.

So love your mom. Hug your mom. Enjoy your mom as much as you possibly can. Happy Mother’s Day!

Charcot-Marie-Tooth: My Journey to Using Arizona Braces: My Current Pair, Part 3

Photo by Glenn Carstens-Peters on Unsplash

Disclaimer: I have no affiliation with brands mentioned in the post. Nor, have I been paid, received compensation, or any free products. I am sharing this for educational purposes only. Nor is this an endorsement of stated products.

A few years ago, I started a series of posts to share about my experiences with braces. Here is a link to the first post, Charcot-Marie-Tooth: My Journey to Using Arizona Braces. With a busier than planned schedule, I didn’t continue the series until recently. Here is part 2 at Charcot-Marie-Tooth: My Journey to Using Arizona Braces, Part Two. You will want to read the posts in the order posted.

I wore the Asolo hiking boots for quite a while. When a pair wore out, they were immediately replaced. However, the product’s sturdiness, despite the deformities in my feet, lasted longer than other products. These boots supported my ankles and feet as they were designed for the rough hiking terrains. As I retired, I no longer needed to worry about keeping them perfectly spiffy for the office. Also, I wore Crocs to church on Sunday mornings since I would not be walking very much. It gave the feet and legs a break.

However, after a while, the pain in my legs and feet after spending nearly the entire day working in my garden, doing other chores around the house, and walking my dog between two-three ½ miles became quite unbearable. I tried to get myself to relax by taking off my shoes and socks, letting them rest, and staying off of them. Eventually, the pain would settle down. However, going to bed was a different story entirely. Since I sleep on my back, the calves of my legs would scream in aching, painful discomfort. I had to get comfortable, so I would roll to one side or the other, trying to do so. However, sleeping on my side isn’t a favorite for me. Once the discomfort settled, I could lay on my back again.

As the challenges grew more painful, I decided that I had to do something. Since it had been years since I had braces and worked with a brace doctor, I did an internet search to find someone to help. Also, I absolutely did not want the plastic braces that uncomfortably gripped my legs. It was an easy search to find an Orthopedic Center near me. I discussed visiting their office with my primary care doctor, who gave them the highest praise. That gave me the confidence I needed to check them at least out.

Before the appointment, I gave considerable thought to having surgery to straighten my feet. I prayed about it, as this was a serious move for me. I read articles about the procedures, which indicated that they had been improved with patients having better outcomes. So, I made an appointment with the doctor.

Upon arriving at my appointment, I was surprised by the doctor’s calm, gentle, and humorous demeanor. This made me relax quite a bit. I felt like he was genuinely interested in me and my health. As we discussed the surgery, after a few tests about ability and x-rays, he shared with me that after surgery, I would need to have six months of physical therapy to get the foot stronger. Also, getting used to walking with a somewhat normal foot would be a challenge since I cannot remember ever having one to start with. It would be time to do the same procedure on the other foot when it was strong enough. However, since I am still walking, I decided that I would wait on the surgery until I am unable to walk if that happens. Also, I had not gotten a clear answer to my prayers to go forward with it.

After some discussion about the uncomfortableness of the plastic braces and my interest in something to support my ankles but not too far up the legs, the specialist decided an Arizona Brace would be my best solution. Why? I didn’t want anything like the plastic ones I had before. They were too uncomfortable and clunky. Also, these looked to give me the support and comfort I needed.

After I finished with the doctor, I met with a Physical Therapist who discussed the concept of the Arizona Brace. One issue for me was that there would be no hinge at the ankle, which I thought would make mobility more challenging. My mother had braces with no hinge, which made walking more challenging. Since I am determined to keep going, I discussed this issue with her. She answered all my questions, confirming my doubts would be worked out.

At this point, the physical therapist took me to a laboratory in the office. She molded my legs from just above the ankles to the feet, much like a cast. Also, I got to pick the color I wanted on the outside of the brace. Since I like a colorful life, I chose blue, not skin color. I would pick them up within a few weeks.

The weeks passed by quickly, and I was at the doctor’s office picking up my new Arizona Braces! I was happy as I saw them as opening the door to remain as active as I wanted to be and possibly even more so. When I arrived, I was taken to the Physical Therapist’s office and shown how to put them on, lace them up, and tie them. She clearly told me, “Be careful when you stand up. Once you get used to standing, you can try walking down the hallway. However, BE CAREFUL! Go slow. This is not a race!” Of course, I, unintentionally got up to walk and went quickly down the hall like it was a race. The Physical Therapist had a hard time keeping up with me. She said, “SLOW DOWN! BE CAREFUL! SLOW DOWN!” So, I was off and running, so to speak.

I have to admit, I was surprised at how comfortable the new braces felt against my legs and feet. Of course, there was some time to get used to wearing them, much like when you buy a new pair of shoes. These braces required that I wear them for a few hours a day gradually building up to a full day. I learned to walk again. I learned how to walk my dog again. The list could go on and on.

I think the most challenging part of all of this was not to get discouraged or frustrated. After all, most guys put on a pair of socks and their shoes, then go about their day. I put socks on, put the braces on, and tie the braces tight, followed by my shoes. The shoes were a new brand to me, Hoka One Ones. They were, and still are, the most comfortable shoes I have ever worn. Also, I think God gave me a gift that day as the shoes were very colorfully designed, which cheered me up.

To this day, I wear my Arizona Braces every time I walk more than a half-mile. I wear a pair of Hokas when I am not walking a long distance, such as from the house to the car, from the car to the church, or to the restaurant. The braces have given me more strength and ability as they support the weakness in my ankles and feet. Much like God promised me years ago, He would be my strength and ability.

Charcot-Marie-Tooth: Easter Blessings

Today, Easter Sunday usually brings me much contemplation as I think about what Jesus did for me on Good Friday and Easter.

Having grown up in a Christian family, around Christian friends, and known more than a few pastors and those desiring to be pastors, I’ve learned quite a bit about what Jesus has done for all of us. Learning about it is one thing, but accepting it and becoming a Christian is another. Also, I’ve learned that I’m not a very preachy kinda guy either, however, I want to share God’s Love with as many people as I can.

Jesus came to earth to minister and teach about God’s Love for everyone. However, on Good Friday, He was crucified. He arose from the dead on Easter Sunday so that we may have eternal life in heaven with Him, IF we accept Him.

If we accept Him? To understand that, please visit To Know God.

I hope and pray that you have an Easter full of God’s blessings. If you don’t know Jesus, I pray you will find Him today and truly celebrate the reasons for this day.

Happy Spring!

You might be thinking that I am a day behind since the first day of Spring, the Vernal Equinox was yesterday, not today. I have been traveling and am a bit behind. Also, I was thinking spring started today but everything is a bit earlier this year and I didn’t catch it.

Since this is probably my favorite season with summer following a very close second, I couldn’t pass up celebrating the day. Spring is my favorite season because it means the harsh winter storms are over, what little we had. If we get a winter storm, it will melt off fast and not be problematic to get around. This year, we had a few storms but they were mostly rain except maybe one snow but it wasn’t enough to keep me home for a day.

As the past fall and winter season came upon me, I decided that I would bide the time by taking classes. The first I took was “The Theology of Eschatology,” from September to December. My interest in Biblical End Times has been a fascination for many years. I had a few others planned, however, a few health challenges arose that kept me busily distracted for about four months. Things are great now, just in time to enjoy my favorite season.

I learned a lot during the health challenges that I plan to write about. However, coming into Spring with all it’s outdoor chores and opportunities, it might be a bit before I sit down and write. Hopefully not as I think those with the challenges of Charcot-Marie-Tooth might benefit from what I learned.

Happy Spring! Get outside this season and enjoy the beauty of God’s Creation!

Charcot-Marie-Tooth: Happy 268th Birthday Wolfgang!

What does Charcot-Marie-Tooth (CMT) and Wolfgang Amadeus Mozart have in common? From a view of music theory or classical music interests, probably nothing. Classical music and CMT is a different story. As far as I know, Mozart did not have CMT disease.

When I attended college, I didn’t anticipate having to take a class in music and arts. The class was called “Aesthetic Experience.” Most of the students on campus called it “Anesthesia Experience.” I wasn’t one of them because I’d already been exposed to the value of the arts. Further, my father played classical music around the house, introducing me to it at a young age. I grew up in the Washington D.C. metro area where we had a 24/7/365 classical music station that was incredibly awesome, WGMS 103.5 FM. The announcers had an awesome sense of humor coupled with making the music more entertaining and interesting than their Public Radio counterparts.

The college course educated me about music and art history. Part of the course requirements was to attend classical music concerts and visit art galleries. I enjoyed that because it got me off campus for a bit and helped to discover that Nashville had more than just country music performances! After attending an event, we had to write about it using some of the theories or techniques and terminologies we were taught in class, much like writing a review. Fortunately for me, I learned quite a bit in the class that I had not known before.

After I graduated from college, it wasn’t long before I discovered how the beauty of classical music can help relieve stress for the CMT patient. I learned that if I play classical music while doing things around my apartment or even while reading, I could feel the stress immediately melt away- especially works by Wolfgang Amadeus Mozart.

Mozart composed 600 works over his short thirty-five years of life (1756-1791). He was a musical genius at a very young age. Many scholars and music lovers will say that he never wrote a wrong note. All I know is that I enjoy every piece of music he wrote, whether I hear it at a concert, on the radio, or on a CD recording. He is one of my favorite composers.

In the early days of life, when I was trying to learn about CMT and taking care of myself, the discovery of Mozart’s music was often a way for me to relax, escaping the health challenges- at least for a while. The gentleness, as I call it, is an amazing experience that I highly recommend to anyone struggling with the neurological side of CMT.

I recently found a classical music streaming service that provides many hours of concerts. Between that, satellite radio, and my compact disc library, I plan to spend my day listening and watching, as it may be, much of Mozart’s music today.

Happy 268th Birthday, Mozart.

Charcot-Marie-Tooth: New Year’s Resolutions?

“Beloved,

I pray that all may go well with you

and that you may be in good health,

as it goes well with your soul.”
– 3 John 1:2

Another year has passed faster than I anticipated. And it didn’t seem to be that fast when I was going through the year, but here we seventeen days into the beginning of another new year. Every once in a while, a buddy will text me, “Wow! The week has gone by so fast!” More recently, “A few more days of 2023 to go.” I know how he feels, though I think time goes faster for him since he’s older than me.

2023 was my most challenging year yet, though it had some great aspects or parts along the way. At this time of year, I like to reflect on what I accomplished or didn’t accomplish over the past year. Also, what was fun and challenging, and where was I successful? To be honest, I can be pretty hard on myself. Not because I have low self-esteem or anything like that, but because I want to always be my best. Also, there isn’t much point in reflection if you aren’t truthful with yourself.

The year started out with problems relating to my medications. In 2022, I asked my Nurse Practitioner if she knew why I was taking certain medications. She didn’t, so I discussed stepping down from one medication. She was fine with that so I followed the recommended routine to do it. While stepping down, I didn’t notice any difference with me so I continued planning to quit taking it.

The new year 2023, brought a prescriptions refill faux pas between the doctor’s office and my prescription company. One said the other had requested a refill when in actuality, neither knew what the other did. I ended up unintentionally stepping down from these medications too.

About this time, I discovered a holistic product that could help me with pain and the neurological issues associated with Charcot-Marie-Tooth (CMT). I was excited about it because I prefer taking holistic products over medications and want to try that before taking a new prescription.

Since I had stepped down from another medication years ago, I was hoping that stepping down from these three prescriptions would be as successful. However, that wasn’t the case. In March 2023, everything came crashing down on me. I was having breakfast at a local restaurant with a buddy when I started feeling the worst I had ever felt. I wasn’t in danger of anything except that I felt horrible with my neurological system acting crazy. Long story short, I returned to the three medications, which were doing a great job with my neurological system. Now, I know what the medications do!

A highlight of 2023 was in February when I began working out at a local wellness center. I met a personal trainer who is a Christian. She quickly agreed with my belief to “believe the impossible.” My belief is if God wants me stronger and healthier, He will help me accomplish it. Yes, I have to do all the work but He will help me reach goals that otherwise I could miss. I spent the year working on an exercise routine with weights, a few other exercises, and a deep water aerobics routine. By year’s end, I had raised the weights on the machines by ten pounds!

I ended 2023 with an interesting journey. I learned that I had injured myself somewhere along life’s way when I was having fun. I have no idea what I did to cause it. This was proof that is often difficult for someone with CMT to know they hurt themselves. I sought medical help with it, which led to discovering another health problem existed. While a bit challenging, God brought all of this together in a way that blessed me, as it didn’t require a hospital visit.

My goals for 2024? Exercise a bit more. I plan to increase my weight-lifting by at least 10 more pounds or more, while the deep water aerobics will probably stay about the same. Last year, I took a class on the “Theology of Escathology” through a local college and enjoyed every minute of it. I am looking to take more classes like that this year. No, I am not looking to be a theologian but to learn more about God and my faith.

I heard on the radio recently about a lady who doesn’t believe in making New Year’s Resolutions. The word “resolutions” was too harsh and she often wasn’t successful. Instead, she “amends” whatever she thinks needs to be improved. I like that idea. I am going to “amend” certain things in my life in 2024 hoping to be successful.

Do you have any goals for 2024? Please share them in the comments below.

May you have a blessed 2024!