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Charcot-Marie-Tooth: ‘Tis the Season to Slip and Fall…

“Icy Sidewalk”
Photo by Jackie at Flickr Creative Commons

Oh, ice. It is a horrible substance which can cause serious injury to our bodies without our even trying. The first “Winter Weather Advisory” of the season appeared in the forecast a few weeks ago. This alerted me to cancel my evening plans and anything the next day – unless it’s something I can wait and see what the weather really does.

Having Charcot-Marie-Tooth (CMT) allows me to have adventures beyond my wildest imagination or dreams. Walking in snow, or attempting to do so on icy surfaces, creates quite a bit of challenges for me. Also, it is a season in which I practice patience hoping to grow in that trait more by spring.

If you find yourself in an icy situation, there is a trick that learned which I hope will help you too. Also, there are a few important considerations to remember.

Your feet are cold whether you know it or not. This is a thought which I drudge up every season when the cold weather settles in. It’s not intended to be negative but to remind myself to pay attention. Neuropathy can be tricky. Often, I find myself busying about my life without regard to how cold my feet might be. When, in reality and some circumstances, my feet are cold. Now, this is a different type of cold. It’s called nerve cold. Be sure to bundle up for the weather. By that, I mean you should determine what you should wear to stay warm paying attention to the weather.

Walking on ice isn’t something that can easily be done. For me, my feet move in a manner that makes slippery surfaces much more dangerous than for others. When approaching an area which is icy or could be slippery, I stop walking. Keep in mind, I tend to look ahead when walking to keep from ending up in these situations. Sometimes, it doesn’t work. If there’s no easy way to get around it, I focus on myself trying to make sure I’m not feeling rushed, stressed or anxious which could cause me to do something stupid or to fall.

Once I have assessed myself and I am ready to move, I began counting. Yes, counting. 1, 2, 3, 4… When I feel like I am ready to move, I take a step restarting my count at one. As I step, each step with a different foot is counted. I continue counting until I have gotten past the icy or difficult spot. Also, I focus on the counting. Do not allow your mind to wander or be distracted. If you focus on counting each step, it should allow you to safely get across the ice. This trick works with walking on water too.

Remember to breathe as you take your steps and walk through the icy area. It doesn’t do any good to hold your breath while attempting to walk over the ice. I found myself more than a few times holding my breathe while doing this- that’s typical for someone exercising or trying something new like this.

If you make it across the ice without falling, be sure to congratulate yourself! Sound silly? No, it really isn’t. I have learned that when I congratulate myself for even the smallest accomplishment, it is encouraging in the long run of life.

Patience? When I mention about how difficult it is for me to walk on ice and snow, it is usually because I am embarrassed about my lack of ability to do so. It often feels like a circus show that I didn’t intend to do. Invariably, someone will say that it is a challenge for EVERYONE to walk in it. I laugh to myself and think, should I share about my feet being crippled and how they move funny? Or, should I let it go and work on my patience in dealing with others? I usually let it go since there usually isn’t any advantage to sharing. And, they wouldn’t understand. By spring you’d think I’d be the most patient man on the planet. Don’t count on it.

Happy New Year!

Every year, I find myself making New Year’s resolutions in an attempt to improve myself. You know, make me a better me. Well, this year, I told my wife I am not making any resolutions because you can’t improve on perfection. She smiles and just lets me be. No wonder I love her.

I made a few of my goals this year. Am happy that I managed to read more books and not spend much time with video games. For me, it was a busy but fun year.

May you have a blessed 2023`!

Merry Christmas!

“For to us a child is born, to us a a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.” -Isaiah 9:6

Merry Christmas my friends! Today, we celebrate the birth of Jesus many years ago. He was born a baby who grew into a man sharing His Ministry throughout the land. He was God’s Son. He was crucified for our sins so we would have a choice of heaven or not, when we die.

You can learn more about this at Peace With God.

We hope you have a blessed Christmas!

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!”

Daylight Saving Time Ends

This Sunday, November 5, at 2 a.m. is the designated time we are all supposed to get up from our warm comfy beds and go throughout the house changing our clocks back one hour to 1 a.m. so we will be on time to church and other important activities in our lives going forward. Ain’t happening in my household… once I am comfortable in my bed… I am comfortable in my bed, I’m not moving to change clocks. I’ll start on Saturday morning by changing the non-essential clocks to finally changing the rest at bedtime. Back one hour. I’ll get my extra hour of sleep either way.

For the first time in my life, or as far back as I can remember, I am almost welcoming the cooler weather season, the end of daylight saving time, and the shortened daylight hours. When I told my wife that, she looked at me as if I was ill and was ready to take me to the hospital emergency room. Why?

I love the warm weather. From spring to late fall I love every second of it. I want to be outside and the more I can be outside the happier I am. It’s been this way forever!

Why the change this year? I think it’s because I have been very busy with yard and garden work from late April to about mid-August. Last year, after I moving into a house in the country, I immediately began working on the garden and yard removing mulch and expanding the planting areas. This year, I planted around 200 hundred perennials and annuals. Also, I spread ninety bags of mulch. In the middle of all this awesome work, I got to mow around two acres of my yard. This fall, before the hard frost, I’m busy planting several tree saplings in my backyard which I hope to “re-forest” or return to nature for the local wildlife to enjoy and around fifty spring bulbs. I think I’m ready to enjoy the cooler weather with my hobbies.

Don’t forget- turn the clock back ONE HOUR so you are not late to church and other activities tomorrow.

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.