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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.

Charcot-Marie-Tooth: Sunday’s Thought!

“Nature’s Beauty”
*(C) 2021, Isaiah Jacobs*

Every morning I set out to walk my dog, Abby, almost always without fail, I open the front door to step out onto the porch and the first words out of my mouth are “Thank You Jesus!” repeated more than a few times. My dog usually looks at me like “what Dad?” as we head out.

As I walk Abby, I cannot help but be in awe of God’s Creation and how beautifully it all comes together. The mountains several miles from me stand majestic and beautiful. Today, I can clearly see them in a blue hue since the summer’s humidity has settled with no clouds in the skies.

We live on a gravel road now with no sidewalks just houses and treed lawns that are spread out far apart. The gravel road is different from the asphalt pavement we have walked many times before. Somehow, the gravel adds to the awesomeness of nature as it abounds around me. I know that sounds odd, but maybe its beauty is brought out after spending 58 years walking, driving, and living in the asphalt jungle known as suburbia.

While walking, I see the beauty of the trees, many different species with leaves of intricate design. It is just incredibly amazing to see the leaf’s detail as it all weaves together on branches to the trunk of the trees. Across from my house’s front door and along the gravel road, the trees line the roadway with so much beauty. Many of them look to have been here back to the day God planted them on this earth.

Of course, living out here where I can enjoy the beauty of nature includes wildlife. We have encountered deer who immediately gallop off into the woods as soon as they see us coming. The occasional squirrel is a bit odd since they were often found in the city. As we walk, we pass through some natural areas which look as though they haven’t been touched by man at all. The beauty in this area causes me to pause to look for more than a few minutes. Abby gives a look, more than a few sniffs, and her attention directed to what could possibly be in this forested area. My guess is probably the bears I’ve heard about from the neighbors, maybe a few opossums, skunks, raccoons, snakes, and the list could go on.

As I enjoy this beautiful area I now call home, I can’t help but be overwhelmingly thankful that I know the Creator who made all of this. In my youth, I learned the many theories which teach how our universe came together. I couldn’t fathom that something so magnificent, so glorious, so intrinsically detailed, so interwoven together creating the beauty of nature, could happen from an explosion or by any other means. No, it was created by God. He created it all. I have to admit I wonder how He did it. Was it created from a thought that brought it all together? Or, did He handmake all of creation? Did He swipe His Hand across the earth causing it all to come together? That’s something I will ask Him when I get to heaven.

When walking Abby down the gravel road, I talk with God about life while enjoying the beautiful scenery. He is like a best friend and we talk often. As a child, I became a Christian and have believed in Jesus, God, and the Bible ever since. I have had some questions along the way, but God answers them in the way that He does. For me, I wouldn’t trade this walk with God all these years nor all the coming years for absolutely anything this world could ever offer me.

The next time you see a tree or a beautiful place in nature, ask yourself, “do I truly know the Creator of all this?” If you do, excellent- see you in heaven one of these days. If not, here’s how to learn more, Peace With God.

“The Gravel Road in Nature’s Beauty”
*(C) 2022, Isaiah Jacobs*

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.

Happy 4th of July, Independence Day!

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.

Be careful and safe as you celebrate today!