Up until a few weeks ago, I hadn’t heard of National Disability Pride Month. It caught my attention as I was reading something else so I read further about it.
What is National Disability Pride Month? It is a month designated to celebrate the uniqueness of people with disabilities and their contributions to society. The disabled community makes up about 15% of the population. This makes sense since many disabled people are overlooked or ignored because of something they cannot do. I have had that happen more than a few times in my life- sad to say. Also, It was created to bring awareness to the needs of making our community more accessible for the disabled.
Anyway, I am not one for letting Charcot-Marie-Tooth (CMT) be what people think about when they meet and get to know me. It doesn’t define me. God defines me and directs my life. As a matter of fact, I rarely mention my diagnosis to anyone except on a need-to-know basis. If they ask questions, depending on who it is and why they are asking, I may or may not answer their questions.
As a disabled man, “disabled” being a term I rarely ever use to describe myself, I have contributed to my community or society by working a full-time job, paying taxes, volunteering with a few charities, attending and supporting my church, helping my neighbor when needed, and taking care of myself without depending on the community, or government, to do so. When I was job searching, I paid attention to the physical requirements making sure that I could meet them. I wasn’t going to end up having government funds paying my way. I know the pros and cons being crippled and it’s limitations so I can serve others as best as I can without causing problems.
As I go through life, as difficult as it might be, I celebrate everything God made me to be. Yes, sometimes having CMT is hard to celebrate but I believe God made me this way for a reason. It might be when I get to heaven that I learn why but it is what I believe.
For me, I don’t believe in the idea of taking pride in myself. As a Christian, I know God considers “pride” a sin, a wrong thing to do. I’m not one to ever deliberately do something which God abhors. Therefore, I am not into the pride part of this month. For me, celebrating the uniqueness that God made me is the best way to go.
What makes you unique and special, different from others, because you have CMT and/or other health issues? Please share in the comments.
I am thrilled to share with you that I hiked Clingman’s Dome at the Great Smoky Mountains National Park on Tuesday, May 31, 2022, and made it to the top of the tower. Are you surprised? I am, but then again, I’m not.
Clingmans Dome is located in the Great Smoky Mountains National Park on the North Carolina/Tennessee border. You hike a steep paved incline trail up the hillside to a concrete trail that leads to the dome area. Once there, you have a view of seven states. On a clear day, you can see 100 miles or so. For someone with Charcot-Marie-Tooth (CMT), this can be a serious challenge to hike. Visit Clingmans Dome to learn more. As they state, “It is not wheelchair accessible.”
In late May, my wife and I took off for our annual Memorial Day weekend vacation. We enjoy attending the Bill Gaither Homecoming Family Fest in the Smokies at the Gatlinburg Convention Center for a few days of Southern Gospel music. After the concerts, we stay a few days longer so I can enjoy the beauty of the Great Smoky Mountains.
This year, since it seems that Charcot-Marie-Tooth (CMT) may be getting worse for me, I decided I wanted to attempt hiking up Clingman’s Dome in the Great Smoky Mountains National Park. Many years ago when I tried it, I hiked up only a few feet, thereabouts, and determined it was too much. However, since that day, so much has changed healthwise, for the better, I thought I would give it one more try.
A little backstory: Before I attempt hikes anywhere or do any physical workouts which are out of the ordinary, or that could stress my body physically, I prepare for it. Since I walk my dog, Abby, every day in our neighborhood, up and down gravel roads with challenging hills, it has helped me to be prepared for hikes like this one. Fortunately, I have been walking my dogs for many years which has really aided in my ability to do other activities. Also, it doesn’t hurt that I used to take nature hikes through local parks either. I frequent a chiropractor and massage therapist who provides tips on staying healthy and exercising. Though Clingmans Dome was definitely a challenge for me to hike, the preparation helped considerably.
We arrived at Clingmans Dome to find the parking places were full so I began thinking that I’d given it a shot- maybe we’ll just go elsewhere. However, God provided us with a parking spot at a perfect location. Not too far from the trail, restrooms, and gift shop. We were headed to the trail. Needless to say, I was excited to attempt the hike.
While I wish that I was able to select a hike and go for it, with CMT, I am limited and must take that into consideration. For one, I can walk around a half-mile without my braces wearing Crocs or walking shoes. Much further, I should wear my Arizona Braces with hiking boots. However, the Arizona Braces are designed to prevent me from turning my ankles, therefore, they are fairly stiff with little wiggle room. If I wear them walking down a slope or hill, they push a bit forward. If I am not paying attention, it is very easy for me to lose my balance gaining speed as I walk downhill. My wife saved me from what could have been a disastrous fall while walking down a hill in Baltimore not realizing ahead of time what could happen. I decided to wear my Hoka One One (no affiliation) walking shoes for this hike. They would offer comfort and stability.
I started my hike using a pair of ski poles my chiropractor suggested I use. I quickly learned they were excellent for helping me with stability. I wish that I could say that I made the hike since it is only a half-mile without stopping or sitting down on any benches. However, I found the benches the National Park Service placed along the trail to be quite a blessing and most definitely took advantage of them. I hiked until I needed to sit down, then started again. I tried not to use every single bench just so I could at least say I didn’t use every single bench. The view was incredible and made the hike so worth the effort. And, the amazing part is I completed the hike with no pain in my feet at all.
Along the way, I had the blessing of meeting several nice people while enjoying beautiful views of nature. I met a nice family from Pennsylvania who spent time at Cades Cove where they saw sixteen bears. I have to admit, I was slightly jealous because I’ve only seen one or two, maybe three, when I’ve been there. Their young boy was so happy to share his photos of the bears he saw with me it made my day. Also, when I reached the top of the tower, the father shared some very kind words of encouragement. He is a Christian and shared his faith. That warmed my heart. Also, he said he knows most people in my situation wouldn’t have even attempted this hike. He was happy to see me do it. His comments helped make my struggles up the hill more of a blessing.
Why am I not surprised that I was successful in the hike? I believe in a powerful God who made promises to me when I was in my twenties that He would be my strength and ability throughout my living with Charcot-Marie-Tooth. He has fulfilled that promise for 30+ years, He’s not stopping anytime soon. I will say, if the hike was something that I should not be attempting, God would have made me realize that too.
Charcot-Marie-Tooth affects all of us differently. Though I have been recently diagnosed with one of the more severe cases that my doctor has seen, I know my own abilities and have talked with a medical professional about exercising and workouts. Be sure to talk to your doctor before attempting any hikes or new exercise routines.
A huge “THANK YOU!” to all the people who made this day possible. Without the forefathers who sought to make this country great and all those who have followed after to continue our freedoms… THANK YOU!
For me, going to fireworks and large gatherings has become something that I cannot physically do anymore. As you know, walking is challenging enough and my Charcot-Marie-Tooth (CMT) has a nerve component which makes some things more challenging as it progresses.
Loud noises, chaos, crowds, and the like associated with July 4th events cause me quite the discomfort and challenges enjoying the event. Since I haven’t been one who enjoys these events very much to start with, I don’t feel it is much loss.
However, it is something that you enjoy but the large events are a challenge for you, try to find a smaller event like in a small town or park. Maybe a neighborhood has a celebration you can enjoy. Or, do you have a friend with a deck or yard where you can sit and enjoy watching fireworks? When I was younger, my girlfriend who is now my wife, had an apartment where we could sit in her living room watching the fireworks show in Washington D.C.. Though we couldn’t see everything, like some of the ground displays, we saw quite a bit which made it fun. And, no crowds.
I am a little late this year with my New Year’s post, having had several life events come up. However, there are a few things I would like to share so I decided to publish it anyway.
I rarely look forward to New Year’s Day because it means the month of January has started and February is not far behind. Traditionally, these two months bring colder weather, ice, and snowstorms. Since I live in a new area now, I’m not sure what weather to expect this season. I understand living close to the mountains will mean a colder and snowier winter.
Do you make resolutions for the New Year? I do. Every year that I can remember, which admittedly is limited since at my age I have a hard time remembering yesterday, I have made New Year’s Resolutions.
Why do I make New Year’s resolutions? The main is the reason is that it provides me a goal to reach in the coming months. I write them down so I can refer to them throughout the year and do a mid-year evaluation. Also, January 1 is a great place to start.
A secret to success when dealing with Charcot-Marie-Tooth (CMT) is this: By making resolutions, writing them down, and having them available throughout the year, you will be more likely to succeed even in your exhausting moments. I know for me, when the exhaustion hits, I feel like giving up. By focusing on my resolutions, I keep focused and don’t give up.
My first and foremost resolution is to learn more about God, continue attending church every week, studying, and reading the Bible. Following through with this resolution will feed the spiritual side of me throughout the year. A good spirit is a healthy one.
My second resolution is to continue loving my wife and furry kids throughout the year. I need to show them expressions of love as well as take care of myself and my responsibilities. Sometimes, I get very busy with chores and don’t always remember to show love to them. Every once in a while, I forget, or skip, walking my dog as well as show her affection. I’ll focus on sharing love first, chores later.
A third resolution which I renew every year is to focus on fighting CMT as best that I can. Basically, this means I will keep doing the exercise programs which worked for me over the last year. The program I developed has been successful in keeping me one step ahead of the CMT progression.
This year, I am adding a new resolution. Last year, I returned to my hobby of reading. I was surprised when I realized that it’s been quite some time since I read a book. I managed to read four books by year’s end along with numerous railfanning magazines about railroad history. My chiropractor mentioned that reading is a very good habit for a CMT patient to do. Apparently, the nerves which CMT effect, and lead to problems in our extremities, can possibly affect the brain too. I didn’t know that and haven’t read about it yet. However, if simply reading is going to help, why not?
A final note: When I make resolutions, I do my absolute best to follow through with them. However, stuff happens which may interfere with my goals. Instead of beating myself up or considering myself a failure, I pick up where I left off and go from there. Failure would be completely abandoning the goals.
Several years ago, I heard a cute Christmas song sung by a group of children at my church. The main verse or thought of the song was “Happy Birthday Jesus!” Over the years, I have known some friends who use the greeting and have grown to like it quite a bit. After all, Christmas is the Birthday of Jesus.
The Birthday of Jesus was an incredibly phenomenal Gift from God to man. He came to earth, lived 33 years teaching about God, and was crucified on a cruel cross to save man from his sins. While it is as simple as that, there are a few things you must do to receive God’s Forgiveness. First, you have to believe in Jesus, confess your sins, and begin following Him.
If you would like to learn more about Jesus, God, and the Bible, please visit Peace With God.
So Happy Birthday, Jesus! I am happy you were born.
What do Christmas and Charcot-Marie-Tooth (CMT) have in common? Not much actually. However, the stress of the holidays, and the days leading up to it, can make you so tired you’ll want to sleep through it.
My brother used to work some long hours during the Christmas Season to make sure his customers had everything they wanted and more. It was commendable of him and his customers loved him. However, what was not known or seen was how much it all worn him out.
Unfortunately, for me and the rest of the family, he would be too tired to celebrate Christmas with us. He would, invariably every Thanksgiving and Christmas, sleep through the day. He had CMT too. I believe that it caused him to be very tired so he needed a lot of rest when he could get it.
Christmas comes but once a year. We never know what the future will hold. Family and friends will not always be around. If you have elderly parents, they may not be around next Christmas. Not to be gloom and doom, but something to think about. We should spend the time with those we love now, not put it off.
Why not get some extra rest before Christmas Day? Maybe go to bed early? Have a friend help you with the last-minute details for Christmas? Would family and friends be willing to celebrate Christmas later in the day so you can join them? Those are a few ideas to help you enjoy the day and your friends and family to enjoy YOU.
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.
