Charcot-Marie-Tooth – Page 4

Charcot-Marie-Tooth: Christmas/Holiday Shopping

Thankfully, it has been years since I have gone shopping on Black Friday. When I was first married, we were watching our pennies as most young newly married couples do. We paid attention to the Black Friday sales to get a few items we wanted. I’ll never forget the crowds, nor will I forget us shoving a computer and monitor in their large boxes into a Honda Civic. We’ve gone Black Friday shopping a few other times, but they weren’t quite as funny as that first one.

As I have aged, Charcot-Marie-Tooth (CMT) has progressed, which means life becomes more challenging. As it does, walking and some neurological aspects become more of a challenge. The walking meant it was getting harder for me to get around much less go shopping in a crowded store or mall. I didn’t understand the nerve issues of CMT until much later in life, frankly a few years ago. I would be nervous or keyed up whenever I was in crowds. However, I was a bit stubborn and would push myself to do the Christmas shopping.

Since I didn’t want my family and friends to be disappointed with no gift from me at Christmas, and online shopping didn’t exist, I had to determine a way to accomplish the task of gift-buying.

First, I do my absolute very best to get all of my Christmas shopping done VERY early. I start shopping early in the year by buying gifts whenever I see something I think someone would like. I would do my best to get all the shopping done before Thanksgiving. As I grew older, time got busier, it became a bit challenging to get it done before Thanksgiving. With that being said, I determined a way to get it done.

Make a list of gifts to purchase and where to buy them. I determined whether I could buy all the gifts at one store or at a mall with several stores or even all at one mall. I made sure to write all of this down on a piece of paper so I wouldn’t forget whenever I ended up going out shopping. These days, there are probably apps for that which can replace the piece of paper. There were a few times when I would end up going somewhere with a friend and I could get some shopping done.

I have a habit of determining when stores, and parking lots, are the least busy. I like to determine when I would likely be able to get in and out of stores and parking lots without much stress avoiding crowds would be awesome. This turned out to be during lunch hours, immediately after work (though on Fridays that never worked), or very early Saturday morning.

Also, would it be possible to go with friends who could help with the driving in the crazy parking lots or help carry stuff if needed.

Using these, I would get the Christmas shopping done. It was a bit more enjoyable since I avoided the stresses of crowds and trying to find a parking spot.

Of course, these days, the best way for me to shop is online. I rarely go shopping these days.

Giving Tuesday, November 29, 2022!

Undoubtedly, you have heard on television, the radio, in publications you read, and from charities, you support about “Giving Tuesday!” It is a global movement to encourage giving to charities and to your community. The idea is to inspire and encourage generosity throughout the world even after “Giving Tuesday!”

Giving can be financially or giving of yourself. Financially would be to make a monetary donation to an organization that shares your interest. It can be a one-time gift or an ongoing one, whichever works best for you. Giving of yourself is the idea of giving of yourself to help others. It could be providing rides to the doctor for a neighbor, doing grocery shopping for a senior citizen, picking up medications for a neighbor, volunteering at the local animal shelter, or helping with a fundraiser. Maybe you know someone with Charcot-Marie-Tooth (CMT) or other health issues which cause them challenges who could use some help. The list can go on and on with many ideas for you to give back to your community.

I would like to bring to your attention an organization that does phenomenal work in encouraging people in our community. It never fails to encourage me when I’m doing my chores around the house, running my errands while listening to WPER Radio 89.9 FM- Virginia’s Home for Encouragement. We can all use encouragement, good music, and inspirational stories along life’s way. To donate, please visit WPER-Donate.

Two other organizations that I would like to mention are Charcot-Marie-Tooth Association and the Hereditary Neuropathy Foundation. These two organizations do a considerable amount of research about Charcot-Marie-Tooth doing their best to help patients with the health issue. These two organizations are awesome resources that, if you haven’t already, should become familiar with.

Remember, giving should come from your heart. Also, sometimes people think they can’t give financially, though they would like to do so, because they do not have large sums of money. Whatever amount you can donate, small or large, is worth donating. It is simply good to give.

Charcot-Marie-Tooth: Happy Thanksgiving!

Thanksgiving brings to mind many things in life for which I am thankful. Although I try to remember to be thankful every day, it’s good to have a day to focus on it.

I am very thankful for God and His Love for me. Ever since I became a Christian many years ago, I have seen God’s Work in my life in every situation even at times when I wouldn’t think He would do so. I am thankful that His Gift of Salvation that guarantees me, and everyone else who believes, eternal life in heaven.

I am thankful for my wife of twenty-six years. She has been an awesome help with my Charcot-Marie-Tooth (CMT) battles and a wonderful companion to spend life with. Only God could prepare a woman like her to be the right companion for me.

I am thankful for my dog, Abby, and my cat, Samson. Abby is a young black labrador retriever who keeps me going. As I will share more details in another post, having a dog to care for every day has helped me to be successful in staying a step ahead of CMT. My cat has had his role too. Many evenings when I head to bed, my cat will curl up on my shoulder and purr. Somehow, he seems to know when I need some extra purrings and goes into an amazing-sounding purr mode. It usually helps me to relax.

Today, at 59-1/2 years old, I am thankful to be alive, walking, and enjoying life. The original diagnosis of CMT, lead me to believe that things could be very different at this age. In some ways, it is, but God has blessed me to keep going forward in life. For that I am thankful.

However you are celebrating today, remember to be thankful for the many blessings in your life. Take the time to enjoy family and friends too. They are the most important aspects of your life.

Charcot-Marie-Tooth: Happy Anniversary!

Time truly does fly! It seems like only yesterday that I said “I do!” to the most beautiful woman in the universe surrounded by our friends and family. But, it wasn’t yesterday. It was twenty-six years ago!

Last night I said, “Marriage isn’t for the faint of heart.” Why? It is a constant challenge to take care of someone you love through good times and bad times. There are a lot of good times, but along with that come life events that can be very challenging causing strains and stresses. We have had our share of life events seeing each other through health challenges, the loss of family members, career changes, the loss of pets, and so on. However, that doesn’t mean we love each other any less. As a matter of fact, those events help make our love for each other stronger.

I have to admit, when I was dating, I didn’t think I would ever find a woman to marry and spend the rest of my life with. I found that many women want a man with a strong muscular body which is something Charcot-Marie-Tooth (CMT) didn’t allow me to have. It became very discouraging, to say the least. I remember one girl who said behind my back “I want a man with a real body!” Yup, that hurt. I wish I could say that she was the only person to mark that remark or similar ones.

The best advice I can give to someone who has CMT and looking to get married is to share everything single thing about the disease with the other person. Share what you know especially your personal experiences. Share what you have read providing them copies of all your reference materials, and direct them to all websites you find informative and encourage them to research on their own as well. If you belong to any support groups on social media like Facebook, share it too. I can’t emphasize enough to share, share, and share your own experiences and what you learned from your doctors. Why? So there are no surprises should the symptoms or issues develop after you are married. Granted, remember CMT affects everybody so there is no guarantee you will experience what you share.

Before I proposed, and after a good bit into our relationship but before it got serious, I shared with the girl I was dating, and possibly going to marry, the prognosis the doctor provided me. Also, I shared information I had researched at the National Institutes of Health with a buddy. I was surprised that it didn’t scare her off. Twenty-six years later, we are still happily married.

Basically, it comes down to this: the person you are going to marry must understand that CMT is what many people call an invisible disease, except for the hands and feet, and there are times when your symptoms are beyond another person’s understanding. The most challenging is when opposite symptoms are happening but are true. An example, I’m cold but I’m hot. For me, that means my feet and lower legs are cold but the rest of me is warm.

And, to her credit, I am healthier being married to her than I might be as single because she has provided many ideas and suggestions on how to take care of myself. Her encouragement along the way has been incredible. Also, it’s a huge blessing to have someone around who truly loves you.

Honoring Our Veterans!

I apologize for being a day late in saying “Thank You!” to our Veterans of the US Armed Forces for all they have done to protect our freedoms and country. However, I didn’t want to just move on and not acknowledge them without a hearty “THANK YOU!”

When I was younger, the draft had just ended and the volunteer service began. I was happy because I was a scrawny kid who was an introverted nerd (still am), and I wasn’t into hanging out with the guys so that would have been unnerving for me. Later, I learned that the military wouldn’t have accepted me because of the deformity Charcot-Marie-Tooth was starting to do in my feet.

Growing up, I had a few or so of friends who went into the military service after graduation. One of them was killed in Beirut. Also, I lived in an area where quite a few neighbors served the US Armed Forces in one way or another, civilian, or enlisted. I gained quite a bit of respect for these people willing to do their work in protecting freedom and the USA.

When I got married, my bride’s side of the family had quite a few family members enlisted in the various branches of the military. With that, I learned quite a bit about what those who served did, what it was like serving, and what it’s like to be a family member of someone who is actively serving. The family part of it was quite interesting as I never gave much thought to a parent being away overseas somewhere serving while the family went through life often without them. Talk about gaining a whole new respect for people- this truly did it!

I can’t say “THANK YOU” loud enough or with enough enthusiasm to our US Armed Forces Veterans and their families for everything they have done, and that they have given up, to protect the USA and our freedom. “THANK YOU!”

Charcot-Marie-Tooth: Happy Autumn

The first day of Autumn used to be one of my least favorite days of the year. It signals the coming of cooler weather followed by the really cold weather of winter. I dislike the cooler weather as it irritates Charcot-Marie-Tooth (CMT) which can cause me to be very uncomfortable. Also, it is often the time of year when I learn how much CMT has progressed over the past several months.

However, some of that seems to have changed. I noticed several years ago when I started participating in regular exercising, i.e., walking my dog, and deep water aerobics, some of my seasonal discomforts disappeared. Or, they aren’t so bad. Unfortunately, I still get cold legs and feet due to neuropathy. Even that isn’t as bad as it was.

Another factor is that I have moved to the countryside where nature is incredibly beautiful throughout the year. I don’t have to go very far to see its beauty and splendor. I think that has become a distraction for me so I don’t notice the discomfort and painful issues as much as I did before.

Also, the power of positive thinking is an amazing tool. Since there really isn’t much I can do, besides medications, to relieve myself from CMT’s discomfort, I focus on what I can enjoy in my life.

The Autumn season begins at 9:03 p.m. I pray you will have a blessed season. Get out as much as you can and enjoy natures changing beauty.

Happy Labor Day

Today, I want to write a note of personal thanks to everyone who goes to work every day and does whatever they were hired to do to make this country great! Without your work, where would the country be?

Enjoy your day off, I hope you have a great time with your family and friends.

For some reason, I am very thankful to those who work hard to get the sour cream and onion potato chips to my local store every week. That’s just for starters.

Charcot-Marie-Tooth: National Disability Pride Month – July 2022

“Enjoying the Outdoors with Friends!
“Photo by ELEVATE

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.

Charcot-Marie-Tooth: Do You Know God?

Do you know God? I mean more than simply crying out “GOD!” or “GOD HELP ME!”? Have you had the opportunity to meet Him in a real way? Are you a born-again Christian?

These days, the dark forces of this world make God out to be unnecessary or outdated or there is no need to worry about God. As a matter of fact, the things of this world which aren’t that important seem to glimmer and glitzy appearing to be the greatest to obtain or have, grabbing our attention.

I have been blessed to have grown up in a Christian home. My father was a Minister of Music for many years and my mother served as a church organist and in various volunteer roles in the church for many years. We were at church every time the doors were open. Yeah, as a kid, I did find that annoying. And, I often wondered why the other kids, later teenagers, weren’t required to be in church every Sunday too. Although, I remember never really asking that question to my parents.

I became a Christian at a very young age. I remember knowing that I wanted to know the God that the preacher that Sunday was talking about. So I prayed the prayer and become a Christian that day. It’s funny, at nearly 60 years old, I can’t remember what I did a few minutes ago or why I came downstairs to my studio for something. However, I still remember that day of becoming a Christian. In my early years in college, I heard remarks about young children becoming a Christian as such a young age probably wasn’t authentic or real as they were not likely to understand what they were doing. Also, a professor said, “You can’t get to heaven on your parent’s coattails, you have to make the decision yourself.” So, just to be sure, as I like to say, I rededicated my life to Christ- making sure I was a Christian.

As life has gone forth, in all its events, challenges, and tragedies, I learned that being in church all that time as a kid and into my youth, and continuing it in my adult life, is a very good thing. As Charcot-Marie-Tooth (CMT) gave me challenges that I didn’t understand, nor did the doctors, I look back now and realize it was God taking care of me. No doubt in my mind it was His Hand helping me.

Though recently I have been diagnosed with a severe case of CMT, and am not sure what the future holds, I have a peace that passes understanding because I know Jesus.

Charcot-Marie-Tooth: I Hiked Clingmans Dome, Great Smoky Mountains!

“Great Smoky Mountains”
(C) 2022, Isaiah Jacobs

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.