I have to admit, once the doctor “officially” diagnosed me with Charcot-Marie-Tooth (CMT), I remember being very discouraged and unhappy with the news but I do not remember being depressed. However, it is possible that I became depressed and did not realize it at the time.
I know one of the things that saved me from depression was my relationship with God. He had other plans for me and I would learn those later. However, this doesn’t mean that Christians do not get depressed, because we do. We are humans too. As time goes on, I notice that God had His Hand over me and was directing my paths toward His Plans for me.
As the days went on, some thirty-plus years ago, I remember that I did not focus on what was wrong with me. Yes, there ARE issues with having CMT and many problems which will need to be addressed over the years. However, the focus wasn’t a “Woe is ME!” attitude. I knew what the doctors had said but I decided to continue ignoring the disease since there was no cure.
With this, my relationship with God was directing my paths. At this point, I had a bit of a bad attitude and some negative thinking. As I will share in future posts, there are ways to get away from that mindset.
If you are battling depression caused by CMT or anything else for that matter, I recommend talking to God about it. Also, there is nothing wrong with seeking the help of mental health professionals. I would look for one who professes to be a Christian as they will tend to guide you along with the Christian values or virtues. Or, you can say a more traditional family counseling. Many churches offer counseling services. To me, the only thing wrong with not seeking mental health assistance is not seeking it at all.
I had put off being diagnosed with Charcot-Marie-Tooth (CMT) as long as I could. However, the pain in my feet and lower legs had gotten so bad by age 22, that I needed to find out if it was CMT, or something else.
The doctor gave his diagnosis and I was right as expected. It’s CMT. He gave a prognosis of not being able to walk after age 40, would be using a wheelchair, that I should never run, should not do this, should not do that, and the list went on and on. Of course, being a young man and in college, sex was always on my mind but the doctor didn’t say much about the subject.
I left the doctor’s office pretty upset and disappointed. It seemed that my life was crushed or over. Everything was falling apart. I wanted to finish college, find a good job, find a wonderful woman to marry, and live happily ever after in our 4-bedroom home with 2.5 children and a dog. That seemed to be disappearing.
Most of the guys I knew or had seen in classes at college were in great physical shape. They were athletic, happy, and able to do just about what they wanted to do. I wanted that. However, it wasn’t going to happen.
When I look back, I believe that God had heard my silent cries of disappointment, and, hey, maybe even angry tears. I didn’t blame Him as it just never really occurred to me to do so and probably because to me, that was disrespectful. I don’t remember praying about it either. I wouldn’t see the extent of what God heard, saw, or felt until I went back to college in the fall.
After the diagnosis, I went back to what I was doing in life. Playing, working, running, and doing whatever. I went back to college in the fall as I wasn’t going to give in to this disease!
This post is intended to be the first of many about my use of braces and hiking boots to enable me to continue walking. It’s been a great journey, but, with some challenges. I hope that you will learn something helpful by my sharing these experiences. As always, speak with your doctor for specific medical advice.
The year was late 1999. The pain and issues with Charcot-Marie-Tooth (CMT) were really starting to be, well, very painful and challenging. Thankfully, I have a fairly positive attitude which was really helping me at this point. However, with the new challenges to walking, I needed some kind of assistance.
My wife and I had decided on a family doctor which I later learned was good about thinking “outside the box” for my care. She knew a doctor who made braces for people in many situations so I was referred to see her.
My appointment went well. It was the usual battery of tests to see how I walk, what seems to be wrong with my feet, and how she can help. Obviously, it’s CMT. However, as you may know, it affects everyone differently, even within the same family. For me, I had the blessing of having the most severe case. So, I didn’t have any family members to ask questions and went on my own way to learn how to help myself.
The Orthopedic doctor took a cast of my feet and calves from just below the knees down. I sat a few minutes, or less, while the casting material set. Once dry, she marked out the pressure points of my feet onto the cast. WOW! Well, with deformed feet, there are plenty of places to mark. Once she finished, a small saw machine was used to cut the mold. That was a weird experience as it grabbed more than a few leg hairs, that I have just spent all of my life growing, as it went up and down my leg. It wasn’t painful, just tingly weird. It did set my nerves off because of the constant vibration but once it settled, I was good.
I waited about two weeks for the braces to arrive and they finally did. I went to the orthopedics office to get them and I’ll admit that I was a bit discouraged about having to get these braces. Yes, I knew they would help me to walk and hopefully reduce the energy it takes for me to do it. However, it’s not how anyone would want to spend life.
The braces fit great. All I had to do was put them on and put the leather straps across my leg through a metal loop on the other side and tighten. Easy enough, yes. But, hardly the last step in this journey. Learning to walk again. Learning to drive again. Learning to just plain ol’ live again would be the new life for me… after I bought more than a few walking shoes a size larger than I normally would wear.
These days, there are a bazillion ways to get help with what ails you! From medications to meditations, exercises to yoga, man-made devices to holistic therapies to psychological. The list could go on and on and on but I think you get my point. These days, Charcot-Marie-Tooth (CMT) patients have plenty of choices.
While I have had to use some medications over the years to keep me from having too much pain, needle-nerve pain is the worst, it is not usually my first choice. Needle-nerve pain feels like a thousand needles prickling me. However, I have not had to take any medication for muscle pain which thrills me to no end.
My first resource when dealing with the pain, new or old, is to call on the name of “Jesus!” Yes, “Jesus!” Sometimes I repeat “Jesus” several times. And, not at all in a profane way, as some might do. I pray that He helps me to get through the challenges of the pain. He does but in many different ways -that’s for another post. Sometimes the pain returns but He is there with me to help me with it too.
Many people will ask, “well, if Jesus can help with the pain, why doesn’t He stop it?” I have to say, “I do not know the answer to that question. When I ask Him He doesn’t always answer that question. One time, I learned it was because a friend needed to see His Power. However, I trust Him and have seen His Mighty Power help me so many times it’s an incredibly awesome experience. Also, many years ago, the serious pain I was suffering led a girlfriend to become a Christian. To me, that is worth it all. While I cannot explain everything in the Bible or how God works, I would say to be careful around someone who tells you they have all the answers to your questions. If someone claims to have all the answers, RUN!
I have a simple strong faith. My faith isn’t ground in having all the answers. It is ground in the Promise that Jesus says He will never leave or forsake me. I trusted Him with my life many years ago and He has NEVER EVER let me down. And, He never will!
If you would like to learn more about the Christian Faith, Jesus, God, and the Bible, please visit Peace With God.
Well, if I were a betting man, I would be richer today than I was a year ago. Why do I say all that? Somehow, I knew COVID-19 was going to be an issue with its lockdown nonsense at least into the election season. Most people seriously doubted me. As more stringent lockdowns began in some parts of the country, my frustrations continue as the “lockdowns” have harmed more people than we really know.
While I understand the need to be careful because of a virus. I’m not seeing where any pre-cautions are any different than those I was taught as a very young boy probably soon after birth! My mother taught me not to put my hands in or on my mouth, do not pick my nose but use a tissue, do not cough into my right hand since you might shake someone’s hand, wash your hands frequently and often (I know, right?!), stay away from people who are coughing or have a cold. Common sense health care, right? Right.
My first and foremost frustration is how diligently I worked for many years, probably close to twenty, to help me feel better and stay ahead of Charcot-Marie-Tooth (CMT). It’s been proven that if you stay active, you can slow the effects of CMT, though not truly stop it or cure you. I have been careful not to be lazy or take the easy way out with many aspects of life so I would stay active. When the governor of Virginia closed everything in the wake of COVID-19, it really upset me because he was messing with my health- along with many others.
Back in 2006, while in physical therapy sessions I learned quite a few exercises to help me with some pain. At the same time, I had started taking Deep Water Aerobics (DWA) classes. It wasn’t long before I connected the exercises in the physical therapy to the exercises in DWA and realized it could be very beneficial to continue taking the DWA classes. After that, I made sure not to miss any classes as it was more fun than going to physical therapy. In the time prior to the COVID shutdowns of March 2020, I never missed more than a few classes at a time. Now, it’s been about a year.
Thankfully, during the summer of 2020, I was able to use a friend’s pool to workout. Thanks to my brilliant Deep Water Aerobics Instructors who provided excellent instruction prior to COVID and provided me an instruction list to a workout routine. Also, I took up riding my bicycle every day along with walking my dog. This routine helped me through to the fall season when it finally got to cold to swim or ride my bike.
Since it doesn’t seem like my DWA classes at the local fitness center will ever start up again, I inquired about personal training sessions. However, the classes would be very expensive, possibly unreliable with the whims of the politicians these days, and there would be no use of the locker room to change. Not good. I could change in the hallway bathroom but I am not too interested in sharing my naked self with the world as I just knew the door would open at an inopportune time. The other choice was to go home in a wet bathing suit. For me, CMT affects my nerves which happens to NOT mix well with cold water and winter weather. A recipe for nerve issues and becoming ill. So it didn’t work out.
Fortunately for me, I have learned to pay quite a bit of attention to my body and what I do to make it feel better or worse. I learned that continuing to have my massage therapy and chiropractor sessions, but spaced at least a week apart, and scheduling every three weeks would mean minimal discomfort.
The blessing in all of this frustration is coming, I believe. My massage therapist is always on the lookout or learning new ways to help people feel better. Not too long after my frustrations of no Deep Water Workouts began, she introduced me to a new type of therapy called “Bemer.” Since it is what I call holistic, meaning no medications involved, I was willing to try it.
My journey into using the Bemer product to help me feel better with guidance from my massage therapist has begun. I will share updates as I can.
Please remember, my experiences are my own and cannot be guaranteed to provide you with the same results. CMT affects each person differently. Discuss any exercise routines or products with your doctor.
I hope and pray that you have a blessed New Year! Remember, often, life is what you make it. If you focus on the negative, that’s the way it will be! If you focus on the positive, that’s what you’ll see and remember. Sounds crazy? Try in 2021 and see how the year goes.
As I mentioned in my previous post, Finding a Hobby, Part 1, I think people who have a disability, especially Charcot-Marie-Tooth (CMT), should find a hobby to occupy their time helping to keep their minds from focusing on their health problems. Hobbies distract from thinking about the aches, pains, and what you cannot do. I started using hobbies to deter my attention several years ago and will probably continue forever. It has allowed me to explore the world!
When I retired, I moved to an area near where I grew up. On moving day, I was pleasantly surprised to hear train horns in the distance. I had forgotten about the trains. How could I? There weren’t trains near my previous home, I was busy with life including my marriage, a career, and trying to stay ahead of CMT.
After settling into my home, and hearing more train horns, I became interested in seeing trains roar by so I started exploring the area. I quickly found places where I could safely, and legally, watch trains go by and photograph too.
I became interested in trains as a young boy by spending time every summer at my grandmother’s house in West Virginia and living near the Southern Railway. She lived across the street from the mainline of the Chesapeake and Ohio Railway. To me, besides hanging out with my grandmother, the trains were the greatest highlight of my summer. It didn’t hurt that I lived not far from the railroad tracks of the Southern Railway where I often heard train horns, including whistles from steam engines.
So I dove deep into the Railfanning hobby doing as much as I could possibly do. I met some great people who enjoyed the hobby immensely. I learned how to chase trains, where great train watching locations are throughout Virginia, West Virginia, Maryland, and Pennsylvania. I found some great websites, a few historical societies, and several magazines which provided me with a wealth of railfanning information about trains and railroads. I was hooked. I learned how to use technology to determine when a train could be coming by and how to get to the tracks in time to see it.
Since I cannot always drop what I am doing to go watch trains, I found two great streaming websites where I can watch trains from around the country. One offers streaming from other countries. I subscribed to Railstream and began streaming trains on my devices any time I want. The other site, which I haven’t subscribed to yet is Virtual Railfan. Virtual Railfan offers free views of some cameras on their YouTube channel too.
I enjoy this hobby immensely. However, it wasn’t too long before I was overwhelmed. This happens with CMT people. A hobby shouldn’t overwhelm. So much to learn, so much information coming at me, and so much stuff fellow railfanning guys said that I had to know, it took the fun out of the hobby. So I took a step back. I don’t want to be “overwhelmed” with a hobby as it’s supposed to prevent me from being “overwhelmed” with my disability.
After much thought about how I can enjoy the hobby without it being overwhelming, I took a step back and tried to determine what I like best about railfanning and trains. For me, I don’t think I need to know every single detail in the entire universe of every single train which goes through every single community and train-watching location that I could watch throughout the entire universe. Nope. I just want to enjoy watching the trains go by, creating videos, and photographing. I have found Classic Trains and Trains Magazine to be my favorite publications. These magazines have websites where subscribers can learn more about trains. Also, the publications of the Chesapeake and Ohio Historical Society and the Railway and Locomotive Historical Society are my favorite as they are well-written publications aiding the person new to the hobby to understand much more.
My point is to find a hobby that you enjoy. Decide what you enjoy about it and get into it. If you should get discouraged about your symptoms of CMT, get into your hobby to make time to relax. However, do not use it as an escape to a point of neglecting your health and not seeing your doctor or following their advice.
When I was younger, many decades ago now, I enjoyed going shopping to find the perfect Christmas presents for friends and family. In later years, especially for my wife. However, each year it became more challenging for me to go to the malls and shop. As most people with Charcot-Marie-Tooth (CMT) know, the disease is progressive and always changing adding a new challenge.
In the early years of life, I didn’t understand that these changes were happening nor did I realize that they would cause everyday tasks or stuff like Christmas shopping to become so challenging. Of course, this was back in the day when there wasn’t as much information about CMT as we only had what the doctors knew. I remember looking it up in the encyclopedia to find a short paragraph.
My type of CMT causes issues with the nerves. Yes, most of CMT does that, but some types have more nerve-based problems. Now that I understand that, I am understanding why finding a parking place and going shopping at the malls or stores have become so challenging. It literally is an exhaustingly tiring task which is a chore to do. Make sense? At first, I thought it was that I was getting lazy or even apathetic.
So what to do? Back decades ago, I would plan to get my Christmas shopping done early with the goal of having it all done by December 1 at the latest. This worked great! I didn’t have the crowds to maneuver nor was finding a parking place a challenge. I could easily go to the stores or mall and shop and leave.
However, over the years my health progressively got worse and it became more of a challenge to go to the malls or other stores too. Of course, I was hugely blessed by being able to go with someone else. I needed to begin finding a much easier way to purchase gifts.
For a few years, as physical challenges became a problem, I bought many friends gift cards to their favorite stores. That worked for most people, but there were always a few who were insulted because they didn’t understand my issues about shopping. And, I have always kept my health issues personal. Cash can work too.
A few years ago, I began to realize that shopping online was a great resource for people like me who find going to the stores very challenging. I can usually pick out what I want without too much hassle. I like that I can view the product, read the descriptions, and in some cases read reviews from others who purchased. Of course, you have to be careful with that because some people complain about everything and give bad reviews or comments just to do so. I use the comments when I am not sure if a product is what I want. Sometimes it helps. For a few people, I will ask them if they show me what they would like online. I like that I can order it and have it delivered to my home. These days, in most cases, you can save the shipping and handling charges and pick it up in the parking lot of the store. Picking up at the store keeps you from having to walk through the store and there are usually plenty of parking spaces reserved for online orders.
This year, 2020, has been a very rough year for many people. However, despite some of its challenges, there can be some positive things if you look for them. I have had a rough year too, but I focused on the positive. Here are a few thoughts.
While my Service Dog passed away this past summer season. He was my bestest friend going everywhere with me. He helped me tremendously with the many challenges of Charcot-Marie-Tooth (CMT). After quite a bit of researching, searching, looking, meeting and greeting, applying to adopt, I have been able to find another dog who will keep me company, take me for long walks, and be the “dog happiness” in my life that only a dog can provide. Eventually, she will be able to help me with my health struggles. I will share more about that later. It is an example though of something positive this year.
Another positive to be thankful for this year is for my wife and her health. She has had some serious health problems in 2020. I am thankful for her positive attitude during the doctor’s visits and subsequent treatments. She has a faith in God which truly was shown throughout her struggles. Also, I am extremely thankful that her treatments were done close to home without any trips to a major city. My concern is my challenges with driving and having to take her to the city. Though I would have done it, I am thankful I only had to do it once.
During the medical treatments for my wife. our church family and a few friends helped make the situation so much easier by being there for her and one family took to us to dinner just before each treatment. It’s one of those PRICELESS things for which I am thankful. Each time, they brought a smile to my wife’s face. For that, I am thankful.
Yes, 2020 has been very challenging. It seems that every day brought new frustrations. BUT, as I said, look for the positive! It might take a few minutes to find it but you will.
I believe hobbies are a really great idea! They can help to keep you busy and not focusing on what Charcot-Marie-Tooth (CMT) is doing to your health. In some cases, they can help you feel better physically and mentally. The fun part is the discovery of what you enjoy!
For me, this was a challenge as I found I have many interests that make great hobbies. Over the years, I dabbled in many hobbies but really didn’t specialize or become really good at any particular one. Mostly, I was limited in free time as I worked a career with a commute of an hour each way, spend time with my wife, dog, and volunteering at church. However, what free time I had, I needed something to enjoy. Before you go all out to pick a hobby, a few things must be considered first.
What do you enjoy the most in life? What keeps your interest and you want to learn more? For me, I love being outside in nature. Pretty much whatever hobby I choose, it’d be great it is was always outside. Unfortunately, CMT does limit some outdoor ability. For example, being outside in cold weather for long periods of time isn’t something that I can do because of the neuropathy in my legs, feet, arms, and hands. BUT, that doesn’t mean I cannot enjoy the outside. Snow skiing, long winter hikes, snowboarding, and the like are not a choice- at least for long periods of time. For me, that doesn’t mean that I cannot take full advantage of the warmer weather and sneak in some activities in the colder.
Having a love for nature, being outside, birds, wildlife, and warm weather, I took up the hobby of landscaping and gardening. At first, it was painful to use garden tools, carry bags of topsoil or Miracle-Gro, and plant any plants including simple annuals. What I found odd though is I enjoyed being outside enough to push myself to enjoy the gardening as painful as it was. I was definitely sore at the end of the day and the next day. However, I noticed I felt better than before I started the project usually within two days. Interesting. Over time, I found this to be a hobby that is great for me.
For me, every hobby cannot be a physical challenge like yard work and gardening. I need something for those days when I am in pain or uncomfortable and need to relax. However, I found that I should not allow my relaxing hobbies to my immediate go-to all the time either. Doing that, would allow the progression of CMT to become more of a problem.
Over the years, I have developed a taste for Classical Music. It started in college and grew especially during the time of the Desert Storm in the early 90s. A buddy was in the war and it was stressful. The music created a calmness for me helping to de-stress. As the years went on, up to now, I have loved the music and began collecting it on CD. As the collection grew, I determined that while the music is great, I know nothing about it. This began a journey of exploring, reading, and listening.
Since i had a new personal computer, which were fairly new things back in the day, I began creating lists of the classical music I had in my collection. These lists served as resources for me to know what classical music I have in my collection, information about the composers who wrote the music, information about the artists who performed and created recordings of the music, and just about anything else I could think of that I wanted to know about my collection of Classical C.D.’S. This was quite the hobby and project until it got difficult to buy new recordings in my area. Since my collection was extensive, I had to compare the works on C.D.’s with lists to be sure I wasn’t duplicating. Ordering C.D.’s through the mail or online (at the time) was a challenge too. I still love the music and do some cataloging.
I will share about two more hobbies which has turned into one of my favorites in my next post.
What are the hobby(ies) you enjoy? Please comment below.
