Christian Faith – Isaiah Jacobs

Charcot-Marie-Tooth: Journey to New Arizona Braces, Part 4

Over the past few years, I have been writing about my journey to wearing braces and the transition to using the Arizona Brace design, which has improved mobility and quality of life quite a bit. You can begin reading the previous posts at Charcot-Marie-Tooth: My Journey to Using Arizona Braces. Why has this topic come up again? I need new braces again and will need them constantly for the rest of my life.

The spring season of 2024 began in all its excellent glory. All the plants were blooming; the Hummingbirds came back again, the Tree Swallows, Black-Capped Chickadees, Eastern Bluebirds, Cardinals, and Carolina Wrens were all swarming my yard with nearly crazy abandon searching and fighting for that perfect nesting spot. I was extremely happy to watch this unfold as this is what I enjoy most about the warm season, and even that of life, nature’s beauty, coming alive for another season. I watch from the sidelines far enough away so I do not disturb yet get my heart’s fill. Sometimes, I can sneak a photo or two of these beautiful birds.

The glorious return of nature meant more time enjoying walks with my half-crazy black labrador retriever. She has more spring to her step and more curiosity as she sniffs out the treks of the wildlife coming through. The funniest, or maybe cutest, part of all this is when she finds a bug or a frog that hops, she hops too.

I looked forward to purchasing annuals, perennials, and some trees before the season gets too far along and the Virginia heat settles in. However, I first needed to clean my gardens from the debris from the previous year. This chore was made easier this year with the installation of a new roof. As they laid tarps down to catch their debris, their removal helped the garden debris go quicker.

As the season went on, I found myself nearly every waking moment, except days at the gym, planting perennials and annuals in my garden. I just could not get enough of it. Once the flowers were planted, I came to a stopping point where I would begin spreading 150 bags of mulch. It is a chore I enjoy yearly, as the end design looks excellent.

This year, as I was spreading bag no. 89, I realized some pain was starting in my left leg. At first, I don’t pay much attention to it. I am constantly having some pain somewhere in my body, so unless it is super painful or in an unusual or new spot, I don’t pay it much attention. That would be par for the course for me. It is not necessarily a good idea, so I don’t recommend Charcot-Marie-Tooth (CMT) patients doing this.

Unfortunately, this pain wasn’t giving up but increasing. When I walked my dog, I noticed it hurt more than usual. I thought that I might need a new set of Arizona braces. It seems that I need a new pair every few years. However, this time, three years have passed. Since it is summer, the warm season I dearly love, I didn’t want to take a few days to go to the doctor.

A little trick I have learned when wearing braces is to determine precisely where the pain is coming from in my feet. When I take the braces off, I immediately begin feeling my foot to determine the location of the pain. Oddly enough, sometimes, I can be in terrible pain, take the braces off, and still not find where the pain is. To my touch, it doesn’t react, nor does it react to my wife’s touch.

If I am not able to locate the spot where the pain originated, I will place a mole foam bandage in the general area where I think the pain originated. Surprisingly, this trick usually calms the pain down, and I can continue doing whatever I want to do.

About mid-summer, I decided to meet with my Orthopedic Surgeon and Brace Doctor to get a new pair of Arizona Braces. Over the years, I’ve developed a great relationship with them, so my stress levels and concerns about the appointment were less than usual. However, I have to admit that I had a few concerns about being able to make my feet and legs relax so I could get a better fit with the new braces.

When we arrived at the doctor’s office, I was treated like an old friend getting my yearly check-up. The doctor has a great sense of humor that makes the appointments fun and less stressful. He put me through the usual examination of looking at my feet, followed by a series of X-rays.

As the doctor examined me, we talked about the foot and toe surgery that could be done to straighten the arches and my hammer toes. The surgery is done on one foot, followed by 6-months of therapy. I’m unsure if the toes are done simultaneously with the foot. Once you are able, the surgery is done on the other foot and again, followed by 6 -months of therapy. The doctor indicated that with my positive attitude, he doubts I would need 6 months for either foot. I still do not opt for the surgery because I am walking and not interested until I am not.

The x-rays were a bit challenging because they wouldn’t allow my wife to take me in and bring me back. That made me a bit concerned or uncomfortable, as she tends to help me relax just by being there. However, the man assisting me did a great job, and the X-rays were done. Once the X-ray technician completed the tasks, they were uploaded so my doctor could examine them to make recommendations for me. As he read the x-rays and compared them to the 2021 exams, I heard him say, “Minimal progression in the feet.” My wife heard it, too. I was elated and nearly jumped up and down, hollering “yahoo,” but that could have damaged my ankles or feet. Either way, I was so happy to hear the news.

I was a bit surprised because it seems that CMT has progressed quite a bit this year. I’ve had more challenges walking, being tired, and so on. However, maybe it was something else. Also, I may have been able to slow the disease by diligently working out at the Wellness Center. After all, most of my exercises have focused on keeping my feet straight and firmly on the ground. Anything is possible.

And it could be God saying, “See, I’m still here!”

My brace specialist did her usual routine of wrapping my feet up and using plaster to form a cast on my lower legs, ankles, and feet. This time, she moved my feet in an attempt to straighten them, which should provide better balance for me. Knowing this was done, I was a bit concerned about the pain I would probably endure when breaking in the new braces.

The braces were ready for me to pick up a few weeks later. Concern and excitement were the emotions of the day. I was excited because the new braces could improve my quality of life and make walking more comfortable and easier.

As the doctor put my new braces on, she shared with me how to wear them—gradually breaking them in by wearing them only a few hours a day for the first week. My wife takes note of the instructions as she knows my concern about pain. When the specialist finishes lacing them up, she gives me the usual instructions of being careful and not running down the hall. I pay attention to her and take it easy as I’m unsure how much the adjustment this time will affect me.

At first, there was the severest pain in my left foot. We readjusted my foot in the brace as it wasn’t situated correctly. I walked down the hall again, feeling good. Surprisingly, it was the “straightest” walking I’ve done in my life. In many ways, I was very excited about wearing them as it meant I was beating CMT. On the other hand, the last time an adjustment was made for new braces, it was a painful experience. That, I am not looking forward to going through.

It is now three months later, I have had some pain during the break-in period. However, no where near what I was expecting. This time, the pain was in the leg muscles that seemed to be working harder than before. Also, a few challenges in my feet made life a bit uncomfortable for awhile. However, it was a reminder of God saying to me, “I am still here!”

Happy Fourth of July!

The Fourth of July, Independence Day, brings back some great memories from my childhood and young adult years. They are a reminder to love family and friends, making time to enjoy their company.

When I was a young boy, as young as I can remember, my parents would take my brother and me to the hills of West Virginia to visit my grandparents. We would arrive a few days before the Fourth of July and stay a few days after. I like that because it gave me time to watch the trains rolling through my grandmother’s hometown. That was the highlight of the trip for me.

However, on the Fourth of July, the family on my mother’s side would gather at my Aunt Mary’s house on the side of a mountain. Everything is on the side of the mountain in West Virginia. There were quite a few cousins, uncles, aunts, grandparents, and great-grandparents, and the list could go on and on, gathering together for a day of fun.

There was always plenty of food, drinks, and desserts to last the day and a few afterward. And, there were games and hiking too. A few years, we went to the local city for the evening fireworks.

Aunt Mary and Uncle John were my mother’s favorite aunt and uncle. She always enjoyed the time she had with them. She spoke of them quite often during the year before our annual gathering.

Then, there’s my mother’s sister Connie. They loved each other dearly. They would chat about everything in the entire universe as if they hadn’t spoken with each other for years when, in actuality, they had spoken by phone possibly as much as once a month. They were the type that would giggle and laugh about everything leaving my Dad and I to wonder what was so funny. Usually, there wasn’t anything funny to the rest of us.

As a young kid, I didn’t quite enjoy these reunions as much as my family did. I always wondered what trains I missed watching rolling through town. However, I remember how much the family enjoyed the time together.

In my older adult years, I have come to miss these reunions. The family has either passed away or gone their separate ways. It seems it was the older generation that kept the reunions going, and as they went on to heaven, the gatherings ended. I have a few relatives which I am still in contact with which I have the pleasure of connecting up with once in a while.

However you celebrate today, may it be a blessed one full of fun and fellowship. Remember the reason we celebrate the day too. For if it weren’t for the many people before us going ahead with their dreams of a new country, we wouldn’t have the freedoms we have.

Charcot-Marie-Tooth: Happy Father’s Day

“Praise him with the sounding of the trumpet,
praise him with the harp and lyre,
praise him with timbrel and dancing,
praise him with the strings and pipe,”
– Psalm 150:3-4

This Father’s Day, my father has been on my mind quite a bit. Granted, when he was living, I celebrated the day with him and did other things, too. But this year, I miss him quite a bit.

One factor in my life that may have triggered memories is that I listen to classical music more these days than I have in recent years. While he blessed my life in so many ways, he was known for his love of music and often had it playing around the house.

In my young adult years, I began a hobby of collecting classical music on compact discs. Dad and I used to go to Tower Records together and shop for new recordings or ones we didn’t have in our collections. He always found a few, and I found more than that. Then, we talk about what we bought and, sometimes, why we did.

Little did he know, or maybe he did, that sharing his love of classical music would be of invaluable help to me in my battle of living with Charcot-Marie-Tooth (CMT). I cannot count how many times I have had classical music playing, whether on radio or compact disc, and nowadays streaming, and I have found relief. I remember a few times when the pain and stresses of the disease were considerably bothering me, and I’d hear a Mozart Piano Concerto, which seemed to melt those issues away. Or, a piece by Handel from the Baroque period would do the same.

Recently, my music system had issues playing my music. The company did a poor job updating the app used to stream or play compact discs. I wasn’t happy. I was frustrated, to say the least, because I couldn’t play music wherever I wanted. I have two portable speakers that allow me to play music outside wherever I am. This time of year, I enjoy playing music while working in my garden or reading on my deck at day’s end. The problem was corrected, but it confirmed what I knew: I love my music.

As I play music and do chores around the house, I think of my father. He would be doing the same thing- listening to music.

My father taught me the most important things in life: God, the Bible, Jesus, and the church. He took us to church every Sunday morning and night, Wednesday night, revival services and special events. Doing those things doesn’t make you a Christian, nor do they guarantee that you will go to heaven when you die. You must accept Jesus Christ as your Savior to go to heaven.

As he lived, he taught me about being a Christian by being a living example, the enjoyment of classical music, and so many other things that I cannot even begin to list. I miss him today, probably more than usual. But, that’s okay, as I wouldn’t bring him back from heaven for any reason. Occasionally, I enjoy the thought that he is finally leading the choir of his dreams- a heavenly choir where there are no parts or instruments missing. It’s all to the glory of God.

May you have a blessed Father’s Day. Hug yours. Call him.

Happy Mother’s Day!

I would like to wish the mothers and grandmothers who read my posts a very happy Mother’s Day! May you have a blessed day with your family.

Today is a holiday that is not very popular with me since my mother passed away twelve years ago. I’m not sure if it’s the holiday that causes me to miss her as it is the season.

My mother was an avid gardener. She loved planting flowers and other plants in her yard. When I was around 7 years old or so, Mom planted a vegetable garden behind the house. It was pretty tasty to eat the vegetables she had grown. While I haven’t taken on her interest in growing vegetables, I have gotten into planting flowers. I have to laugh, as there hasn’t been a season since her passing that I haven’t wanted to call her for advice.

Recently, I had an opportunity to sit in a meeting to hear a lady from Canada discuss her life with Charcot-Marie-Tooth CMT). She discussed having quite a few challenges that were quite a bit like what I have dealt with over the years. Something she said reminded me of my mother’s love for me. My mother never hesitated to let me know she loved me. As a young man, that wasn’t exactly what I wanted to hear back then. However, as I look back and think about it, her expressions of love often helped me to deal with the headaches of CMT. I will never know how much she really knew about it since at the time, there wasn’t much written and we certainly did not have access to what was.

So love your mom. Hug your mom. Enjoy your mom as much as you possibly can. Happy Mother’s Day!

Happy Spring!

You might be thinking that I am a day behind since the first day of Spring, the Vernal Equinox was yesterday, not today. I have been traveling and am a bit behind. Also, I was thinking spring started today but everything is a bit earlier this year and I didn’t catch it.

Since this is probably my favorite season with summer following a very close second, I couldn’t pass up celebrating the day. Spring is my favorite season because it means the harsh winter storms are over, what little we had. If we get a winter storm, it will melt off fast and not be problematic to get around. This year, we had a few storms but they were mostly rain except maybe one snow but it wasn’t enough to keep me home for a day.

As the past fall and winter season came upon me, I decided that I would bide the time by taking classes. The first I took was “The Theology of Eschatology,” from September to December. My interest in Biblical End Times has been a fascination for many years. I had a few others planned, however, a few health challenges arose that kept me busily distracted for about four months. Things are great now, just in time to enjoy my favorite season.

I learned a lot during the health challenges that I plan to write about. However, coming into Spring with all it’s outdoor chores and opportunities, it might be a bit before I sit down and write. Hopefully not as I think those with the challenges of Charcot-Marie-Tooth might benefit from what I learned.

Happy Spring! Get outside this season and enjoy the beauty of God’s Creation!

Charcot-Marie-Tooth: New Year’s Resolutions?

“Beloved,

I pray that all may go well with you

and that you may be in good health,

as it goes well with your soul.”
– 3 John 1:2

Another year has passed faster than I anticipated. And it didn’t seem to be that fast when I was going through the year, but here we seventeen days into the beginning of another new year. Every once in a while, a buddy will text me, “Wow! The week has gone by so fast!” More recently, “A few more days of 2023 to go.” I know how he feels, though I think time goes faster for him since he’s older than me.

2023 was my most challenging year yet, though it had some great aspects or parts along the way. At this time of year, I like to reflect on what I accomplished or didn’t accomplish over the past year. Also, what was fun and challenging, and where was I successful? To be honest, I can be pretty hard on myself. Not because I have low self-esteem or anything like that, but because I want to always be my best. Also, there isn’t much point in reflection if you aren’t truthful with yourself.

The year started out with problems relating to my medications. In 2022, I asked my Nurse Practitioner if she knew why I was taking certain medications. She didn’t, so I discussed stepping down from one medication. She was fine with that so I followed the recommended routine to do it. While stepping down, I didn’t notice any difference with me so I continued planning to quit taking it.

The new year 2023, brought a prescriptions refill faux pas between the doctor’s office and my prescription company. One said the other had requested a refill when in actuality, neither knew what the other did. I ended up unintentionally stepping down from these medications too.

About this time, I discovered a holistic product that could help me with pain and the neurological issues associated with Charcot-Marie-Tooth (CMT). I was excited about it because I prefer taking holistic products over medications and want to try that before taking a new prescription.

Since I had stepped down from another medication years ago, I was hoping that stepping down from these three prescriptions would be as successful. However, that wasn’t the case. In March 2023, everything came crashing down on me. I was having breakfast at a local restaurant with a buddy when I started feeling the worst I had ever felt. I wasn’t in danger of anything except that I felt horrible with my neurological system acting crazy. Long story short, I returned to the three medications, which were doing a great job with my neurological system. Now, I know what the medications do!

A highlight of 2023 was in February when I began working out at a local wellness center. I met a personal trainer who is a Christian. She quickly agreed with my belief to “believe the impossible.” My belief is if God wants me stronger and healthier, He will help me accomplish it. Yes, I have to do all the work but He will help me reach goals that otherwise I could miss. I spent the year working on an exercise routine with weights, a few other exercises, and a deep water aerobics routine. By year’s end, I had raised the weights on the machines by ten pounds!

I ended 2023 with an interesting journey. I learned that I had injured myself somewhere along life’s way when I was having fun. I have no idea what I did to cause it. This was proof that is often difficult for someone with CMT to know they hurt themselves. I sought medical help with it, which led to discovering another health problem existed. While a bit challenging, God brought all of this together in a way that blessed me, as it didn’t require a hospital visit.

My goals for 2024? Exercise a bit more. I plan to increase my weight-lifting by at least 10 more pounds or more, while the deep water aerobics will probably stay about the same. Last year, I took a class on the “Theology of Escathology” through a local college and enjoyed every minute of it. I am looking to take more classes like that this year. No, I am not looking to be a theologian but to learn more about God and my faith.

I heard on the radio recently about a lady who doesn’t believe in making New Year’s Resolutions. The word “resolutions” was too harsh and she often wasn’t successful. Instead, she “amends” whatever she thinks needs to be improved. I like that idea. I am going to “amend” certain things in my life in 2024 hoping to be successful.

Do you have any goals for 2024? Please share them in the comments below.

May you have a blessed 2024!

Charcot-Marie-Tooth: My BEST Tip!

“Great Smoky Mountains National Park, Tennessee”

I have been thinking about what tip I have learned over the years living with Charcot-Marie-Tooth (CMT) would be my “best tip” or “No. 1.” Or, which one would be most beneficial? I can share many tips, tricks, and hacks, but only one stands at the forefront of anything I have ever done that I would never want to be without.

What is it? Follow Jesus. I gave my life to Jesus Christ, allowing Him to take over becoming a Christian. I recommend reading the Bible, a daily devotional, attending a local Bible-believing and teaching church, and getting involved in it. Yes, simple as that. I will admit, I would absolutely NOT EVER want to fight any of the battles against Charcot-Marie-Tooth (CMT) as I have over the past forty years without Jesus. He has been a strong comfort and encouragement beyond what I could ever explain in writing.

I had the blessing of being born into a Christian family, which doesn’t automatically make me a Christian, but it provided exposure to serving God from the day I was born. At age 6, I remember thinking I wanted to be saved from my sins like the preacher talked about. I believe I became a Christian that day, though I do not remember the date or time. In my early college years, I became concerned by something a professor said about whether I was truly a Christian. I invited Jesus into my heart again- just to be certain.

It wasn’t until my college years that I learned how much Charcot-Marie-Tooth would affect me. The pain I had in those early years was beyond description, meaning I can tell you, or write about it, all I want, but unless you go through it, you don’t understand. I’m sure those with CMT will agree, or you will eventually.

The salvation from my sins so that I will go to heaven when I die wasn’t the only part of God’s Love that has helped me get through life. It’s His Compassion, Companionship, Love, and Desire for wanting me to be the best I can be.

I cannot remember how many times I have had pain in my feet, legs, hands, and arms and reached out to Jesus asking for His Help. Sometimes, I would just talk to Him because I knew I could trust Him to keep my secrets. Sometimes, when CMT was bothering me, I didn’t want to burden someone with my struggles, so I talked to God about them. Other times, I would get discouraged or in a funky mood about life with CMT, so I talked to God about it. It has been truly amazing at how He reached down to provide me comfort in many ways.

In the early years of college, God told me that He would be my strength and ability if I would just trust Him. That I have. I wish I could say that I have been perfect along the way, but whenever I strayed, God always did something to remind me He was there for me.

While in college, I was teased quite a bit by the other guys. I was surprised how much this bothered me because I had already gone through it in high school and the real world as a working adult. Their goal seemed to remind me that I wasn’t physically fit like them or was only half a man because of my lack of muscle and probably how my interesting-looking feet looked. Eventually, I learned to tune most of them out. After all, I was there to get an education so I could get a better job.

In God’s Plans of doing things, He brought a Christian man into my life to be my college roommate for the last few years of school. This guy was kinda nerdy and very smart, had polite manners, and was fun to hang out with. He was one of the first few college-age guys who treated me with respect and not some kind of problem because of my recent diagnosis with CMT. We would go on to be lifelong friends, catching up with each other in our later years, which seemed to be picking up where we left off. Ed has always been a source of encouragement and has done his best to help me see the positive in everything. In these later years, when CMT seemed to be making strides faster than I could keep up with, it’s been an awesome help to have him around to text my frustrations. This friendship may not have come together if I didn’t believe in God and become a Christian many years ago.

When I look back over the last thirty or so years, I can see where God directed my path to the right doctors, specialists, physical therapists, chiropractors, massage therapists, a personal trainer, and a service dog. All of these came together to help me have a healthier and happier life. I know it was all God’s doing, as I couldn’t pull together such perfect medical care no matter how hard I tried. At age 60, I am using much less medication than I originally thought I would, which gives me a much more quality of life.

So, yes, becoming a Christian and following Jesus is my best tip!

Happy Birthday to Me!

Yes, earlier this year, I celebrated my 60th birthday, and am so happy to have reached this milestone in my life! I know, you think I am a bit crazy, right? Well, no, not really. I could get all depressed about getting another year older, but that’s a negative way of looking at things, especially the blessings in your life.

God doesn’t promise us another minute or day in this life. Every minute of every day that I live, I am thankful. It’s a gift God has given me. Sometimes, I wish I’d done more in my life, such as working in a management position in my career. Frankly, Charcot-Marie-Tooth (CMT) would have prevented me from being the best I would need to be to work in that type of role. However, I was able to work a career at the highest level that I was comfortable with and have a pension to retire. They say, I could have worked longer and made more money. I say I have had too much fun in retirement with my wife, dog, and cat to trade it for more money.

Another point for me, at 60, I am still walking. Yes, I wear braces for any distance passed a 1/2 mile. Sometimes, when I am walking on unfamiliar surfaces or known challenging terrain, I will use a cane to help with balance. However, I am not confined to a wheelchair as was the original prognosis when I was in my twenties. Sometimes, it is a bit painful to walk, but, the moments of walking with my dog are absolutely priceless, and I wouldn’t give them up for anything.

In a few weeks, my wife and I are taking off on a short trip to celebrate my 60th birthday. We’ll head to the infamous Horseshoe Curve National Historic Landmark, Altoona, PA, as well as some smaller towns, Lilly, Cresson, and the Portage area where I will photograph and video trains. Our meals will be at our favorite places, Texas Roadhouse and Perkins. Since neither are located near us now, we enjoy them when we can. We did this trip a few years ago and enjoyed ourselves.

My wife bought me three bluebird houses that I have had my eyes on for a while. I enjoy watching birds. Now that I own some land, I am converting part of the yard back to nature which will include a bluebird house trail. She knows my love for nature so she wanted to celebrate my 60th in a big way.

Though God told me He would be my strength and ability if I just trusted in Him, I never dreamed that He would make me so happy at sixty years old doing more than I imagined.

So happy birthday to me. I’m happy how God has blessed me to live this long in life.

Happy Father’s Day!

Happy Father’s Day! I hope you are enjoying time with your father or someone who has been like a father to you in your life.

I created the special “Father’s Day” graphic to remember my father this Father’s Day! One of his favorite events to attend was the Washington D.C. Auto Show held at the Washington D.C. Convention Center every January. It was three levels of nothing but new cars, pickup trucks, SUVs, mini-SUVs, and the like.

As a young boy, Dad would take us every year to the show when it was held between Christmas and New Year’s Day. Along with that was a trip to McDonald’s and a hobby shop to look for train models.

As I grew older, our trip changed as it was moved to the end of January. The hobby shop had closed years ago, and my interests had changed too. I would take the day off from work and go every year with my father to the new car show. After the car show, we would head to Tower Records, which had the best classical music CD selection anywhere. We always came home with our arms loaded with information on new cars and, of course, new CDs to add to our collections and listen to while going through the new car material… again.

As a man with Charcot-Marie-Tooth (CMT), those trips were challenging and often very painful on my feet. And, I would always end the day in lots of pain, never failed. However, I never told my father that. I’m guessing he had an idea, but we never really discussed it. I didn’t want him to know because the day always meant something special to him.

While we were never able to toss the football together or do some of the sports activities like other fathers and sons did. However, we went to car shows, went on steam locomotive rides, enjoyed hot rod car shows, and did many other activities like those instead.

As I’ve gotten older, getting around suburban areas like Washington, D.C., has become more difficult, and the pain has increased. When the Car Show commercial comes on TV each January, I think how nice it would be to go again with my father.

I miss Dad. While I have thought about going to the Car Show with someone else, it is a matter of distance now that I’ve moved to the country. And, it really would not be the same without Dad.

May you have a blessed “Father’s Day!”

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!