Tag: Charcot-Marie-Tooth

Charcot-Marie-Tooth: My Journey to using Arizona Braces

“Working With the Doctor”
Photo by Ryan Snaadt on Unsplash

This post is intended to be the first of many about my use of braces and hiking boots to enable me to continue walking. It’s been a great journey, but, with some challenges. I hope that you will learn something helpful by my sharing these experiences. As always, speak with your doctor for specific medical advice.

The year was late 1999. The pain and issues with Charcot-Marie-Tooth (CMT) were really starting to be, well, very painful and challenging. Thankfully, I have a fairly positive attitude which was really helping me at this point. However, with the new challenges to walking, I needed some kind of assistance.

My wife and I had decided on a family doctor which I later learned was good about thinking “outside the box” for my care. She knew a doctor who made braces for people in many situations so I was referred to see her.

My appointment went well. It was the usual battery of tests to see how I walk, what seems to be wrong with my feet, and how she can help. Obviously, it’s CMT. However, as you may know, it affects everyone differently, even within the same family. For me, I had the blessing of having the most severe case. So, I didn’t have any family members to ask questions and went on my own way to learn how to help myself.

The Orthopedic doctor took a cast of my feet and calves from just below the knees down. I sat a few minutes, or less, while the casting material set. Once dry, she marked out the pressure points of my feet onto the cast. WOW! Well, with deformed feet, there are plenty of places to mark. Once she finished, a small saw machine was used to cut the mold. That was a weird experience as it grabbed more than a few leg hairs, that I have just spent all of my life growing, as it went up and down my leg. It wasn’t painful, just tingly weird. It did set my nerves off because of the constant vibration but once it settled, I was good.

I waited about two weeks for the braces to arrive and they finally did. I went to the orthopedics office to get them and I’ll admit that I was a bit discouraged about having to get these braces. Yes, I knew they would help me to walk and hopefully reduce the energy it takes for me to do it. However, it’s not how anyone would want to spend life.

The braces fit great. All I had to do was put them on and put the leather straps across my leg through a metal loop on the other side and tighten. Easy enough, yes. But, hardly the last step in this journey. Learning to walk again. Learning to drive again. Learning to just plain ol’ live again would be the new life for me… after I bought more than a few walking shoes a size larger than I normally would wear.

This post continues at: Charcot-Marie-Tooth: My Journey to using Arizona Braces.

An Update to Charcot-Marie-Tooth, COVID-19, and Frustrations

(C) 2021, Bemer Group

Disclaimer: I am NOT affiliated with Bemergroup. I receive no payment should you purchase their product. I purchased a product for personal use so I am sharing my experiences as a Charcot-Marie-Tooth (CMT) patient. My experiences are not guaranteed to be yours.

A few months a month ago, I wrote a post about my frustrations with Charcot-Marie-Tooth (CMT) and COVID-19. You read can the post here. I want to share with you an update.

The effects of CMT began showing their ugly annoyances during late October 2020 as I had no Deep Water Aerobics classes, my Service Dog had passed away, and I had no other exercises. Bicycling had to end when the weather got cold. It seemed I was losing more ground on feeling good. However, my faith in God reminded me there is always hope.

After my Service Dog passed away, I began to realize that he had been doing quite a few things to help me. Something about dogs! Not only did he keep me moving, but, he managed to stave off many of the neurological issues associated with my type of CMT. Also, he helped my introverted-nerd personality become a little more extroverted. Fortunately, I was able to adopt another dog who is learning to be a companion. I am looking forward to seeing what she does to help me with CMT.

Since my last post about being introduced to the Bemer Group products, I bought the product and have been strictly following a daily routine as instructed by my Massage Therapist. Before I did this, I went through a few months of testing the product and learning the results, and going over them with her. Successful results led to having the therapy daily.

As you probably know already, CMT causes quite a bit of discomfort in many ways. I lived in shorts and T-shirts most of the fall-winter season as I could not be comfortable in other clothing. For me, that’s unusual because of the cold. Thankfully, the treatment with Bemer Group has helped me with relief from the discomfort.

The best part of the Bemer daily routine is I can do it at home from the comforts of my own bed. It’s the first thing I do every morning and at the end of the day. My routine takes 16 minutes with both sessions. The short bit of time has given me quite a bit of energy as I have never had before.

For me, I have noticed that the arthritic pain in my hands has gone away. The winter of 2020-2021 was the first one in which I did not have to take pain medications to ease the arthritis pain. Also, I have noticed an awesome increase in energy level which has caused renewed interest in many aspects of my life.

Now, I just need to find an exercise routine to make up for not taking the Deep Water Aerobics classes.

Talk with your doctor and neurologist about Bemer Group products.

Please note: Bemer Group products are not intended to diagnose, treat, cure or prevent any disease. I am writing about my experience. Please consult your own physician or healthcare provider if you have any medical concerns.

Have a Blessed Easter!

(C) Isaiah Jacobs

Easter is one of those times in my Christian faith which just rips my heart out. It’s not unusual to find me crying my eyes out when viewing a pageant, play, hearing and singing the beautiful Easter hymns with the glorious voices and instruments or movie about Jesus’s crucifixion on the cross for my sins. To imagine or think someone or anyone would do that for me, brings tears to my eyes.

Jesus Christ was crucified on a cruel cross on Good Friday. He rose from the dead three days later on Easter Sunday so that we could have eternal life in Heaven with Him. That is, if we decide to accept Jesus Christ as our Savior. A great website to learn about the Christian faith, how to become a Christian, Jesus, and God, is Peace With God.

Becoming a Christian has been the best decision and the best thing I have ever done in my life. I know when I die, I will be in heaven with Jesus. I hope and pray that you will make the decision too.

A Faith in Jesus

“Faith!”
Photo by Zac Durant on Unsplash

These days, there are a bazillion ways to get help with what ails you! From medications to meditations, exercises to yoga, man-made devices to holistic therapies to psychological. The list could go on and on and on but I think you get my point. These days, Charcot-Marie-Tooth (CMT) patients have plenty of choices.

While I have had to use some medications over the years to keep me from having too much pain, needle-nerve pain is the worst, it is not usually my first choice. Needle-nerve pain feels like a thousand needles prickling me. However, I have not had to take any medication for muscle pain which thrills me to no end.

My first resource when dealing with the pain, new or old, is to call on the name of “Jesus!” Yes, “Jesus!” Sometimes I repeat “Jesus” several times. And, not at all in a profane way, as some might do. I pray that He helps me to get through the challenges of the pain. He does but in many different ways -that’s for another post. Sometimes the pain returns but He is there with me to help me with it too.

Many people will ask, “well, if Jesus can help with the pain, why doesn’t He stop it?” I have to say, “I do not know the answer to that question. When I ask Him He doesn’t always answer that question. One time, I learned it was because a friend needed to see His Power. However, I trust Him and have seen His Mighty Power help me so many times it’s an incredibly awesome experience. Also, many years ago, the serious pain I was suffering led a girlfriend to become a Christian. To me, that is worth it all. While I cannot explain everything in the Bible or how God works, I would say to be careful around someone who tells you they have all the answers to your questions. If someone claims to have all the answers, RUN!

I have a simple strong faith. My faith isn’t ground in having all the answers. It is ground in the Promise that Jesus says He will never leave or forsake me. I trusted Him with my life many years ago and He has NEVER EVER let me down. And, He never will!

If you would like to learn more about the Christian Faith, Jesus, God, and the Bible, please visit Peace With God.

Happy Spring!

(C) Isaiah Jacobs

While Summer is my favorite season, Spring is the close second. It means time for me to get outside much more often. Also, I plan to begin a new exercise routine this season since Deep Water Aerobics was cancelled and never restarted.

If you remember from a previous post, I started a routine this winter using a Bemer Group product (no affiliation, more about it later) which helped tremendously with the cold weather. My current thought is to start biking. It will help my legs to get more exercise and something for me to do outside!

I am planning to explore my universe with my new dog more this spring and summer. There are several places that I can go railfanning so we will explore them as well as hike a few battlefields!

How do you celebrate Spring? Any new exercise routines? Please share in the comments below!

Charcot-Marie-Tooth, COVID-19, and Frustrations

“Coronavirus!”
Photo by Glen Carrie on Unsplash

Well, if I were a betting man, I would be richer today than I was a year ago. Why do I say all that? Somehow, I knew COVID-19 was going to be an issue with its lockdown nonsense at least into the election season. Most people seriously doubted me. As more stringent lockdowns began in some parts of the country, my frustrations continue as the “lockdowns” have harmed more people than we really know.

While I understand the need to be careful because of a virus. I’m not seeing where any pre-cautions are any different than those I was taught as a very young boy probably soon after birth! My mother taught me not to put my hands in or on my mouth, do not pick my nose but use a tissue, do not cough into my right hand since you might shake someone’s hand, wash your hands frequently and often (I know, right?!), stay away from people who are coughing or have a cold. Common sense health care, right? Right.

My first and foremost frustration is how diligently I worked for many years, probably close to twenty, to help me feel better and stay ahead of Charcot-Marie-Tooth (CMT). It’s been proven that if you stay active, you can slow the effects of CMT, though not truly stop it or cure you. I have been careful not to be lazy or take the easy way out with many aspects of life so I would stay active. When the governor of Virginia closed everything in the wake of COVID-19, it really upset me because he was messing with my health- along with many others.

Back in 2006, while in physical therapy sessions I learned quite a few exercises to help me with some pain. At the same time, I had started taking Deep Water Aerobics (DWA) classes. It wasn’t long before I connected the exercises in the physical therapy to the exercises in DWA and realized it could be very beneficial to continue taking the DWA classes. After that, I made sure not to miss any classes as it was more fun than going to physical therapy. In the time prior to the COVID shutdowns of March 2020, I never missed more than a few classes at a time. Now, it’s been about a year.

Thankfully, during the summer of 2020, I was able to use a friend’s pool to workout. Thanks to my brilliant Deep Water Aerobics Instructors who provided excellent instruction prior to COVID and provided me an instruction list to a workout routine. Also, I took up riding my bicycle every day along with walking my dog. This routine helped me through to the fall season when it finally got to cold to swim or ride my bike.

Since it doesn’t seem like my DWA classes at the local fitness center will ever start up again, I inquired about personal training sessions. However, the classes would be very expensive, possibly unreliable with the whims of the politicians these days, and there would be no use of the locker room to change. Not good. I could change in the hallway bathroom but I am not too interested in sharing my naked self with the world as I just knew the door would open at an inopportune time. The other choice was to go home in a wet bathing suit. For me, CMT affects my nerves which happens to NOT mix well with cold water and winter weather. A recipe for nerve issues and becoming ill. So it didn’t work out.

Fortunately for me, I have learned to pay quite a bit of attention to my body and what I do to make it feel better or worse. I learned that continuing to have my massage therapy and chiropractor sessions, but spaced at least a week apart, and scheduling every three weeks would mean minimal discomfort.

The blessing in all of this frustration is coming, I believe. My massage therapist is always on the lookout or learning new ways to help people feel better. Not too long after my frustrations of no Deep Water Workouts began, she introduced me to a new type of therapy called “Bemer.” Since it is what I call holistic, meaning no medications involved, I was willing to try it.

My journey into using the Bemer product to help me feel better with guidance from my massage therapist has begun. I will share updates as I can.

Please remember, my experiences are my own and cannot be guaranteed to provide you with the same results. CMT affects each person differently. Discuss any exercise routines or products with your doctor.

Merry Christmas!

(C) 2020, Isaiah Jacobs

MERRY CHRISTMAS! I enjoy the Christmas season with all its decorations and beautiful music. I have quite a few memories of Christmases from my childhood with my parents who made the season a special time. My parents taught me that Christmas is more than gifts and decorations.

Most of all, I am very thankful for the Birth of Jesus Christ, for His saving me from my sins, and for the Promise of eternal life in heaven when I die. The Christmas season to me is a celebration of His Birth, especially Christmas Day! The greatest Christmas Gift ever was God sending His Son Jesus as a Baby to be born on earth and live among people. At the early age of 36, Jesus was crucified on a rugged cross for our sins. It’s hard for me to believe that God or Jesus would care enough for me and where I spend eternity to do that for me. BUT, He did.

A great resource to learn more about God’s Plan of Salvation for man is Peace With God.

Finding A Hobby, Part 2

“NS 8081 leads through the Shenandoah Valley”
Photo by Brian Breeden on Unsplash

As I mentioned in my previous post, Finding a Hobby, Part 1, I think people who have a disability, especially Charcot-Marie-Tooth (CMT), should find a hobby to occupy their time helping to keep their minds from focusing on their health problems. Hobbies distract from thinking about the aches, pains, and what you cannot do. I started using hobbies to deter my attention several years ago and will probably continue forever. It has allowed me to explore the world!

When I retired, I moved to an area near where I grew up. On moving day, I was pleasantly surprised to hear train horns in the distance. I had forgotten about the trains. How could I? There weren’t trains near my previous home, I was busy with life including my marriage, a career, and trying to stay ahead of CMT.

After settling into my home, and hearing more train horns, I became interested in seeing trains roar by so I started exploring the area. I quickly found places where I could safely, and legally, watch trains go by and photograph too.

I became interested in trains as a young boy by spending time every summer at my grandmother’s house in West Virginia and living near the Southern Railway. She lived across the street from the mainline of the Chesapeake and Ohio Railway. To me, besides hanging out with my grandmother, the trains were the greatest highlight of my summer. It didn’t hurt that I lived not far from the railroad tracks of the Southern Railway where I often heard train horns, including whistles from steam engines.

So I dove deep into the Railfanning hobby doing as much as I could possibly do. I met some great people who enjoyed the hobby immensely. I learned how to chase trains, where great train watching locations are throughout Virginia, West Virginia, Maryland, and Pennsylvania. I found some great websites, a few historical societies, and several magazines which provided me with a wealth of railfanning information about trains and railroads. I was hooked. I learned how to use technology to determine when a train could be coming by and how to get to the tracks in time to see it.

Since I cannot always drop what I am doing to go watch trains, I found two great streaming websites where I can watch trains from around the country. One offers streaming from other countries. I subscribed to Railstream and began streaming trains on my devices any time I want. The other site, which I haven’t subscribed to yet is Virtual Railfan. Virtual Railfan offers free views of some cameras on their YouTube channel too.

I enjoy this hobby immensely. However, it wasn’t too long before I was overwhelmed. This happens with CMT people. A hobby shouldn’t overwhelm. So much to learn, so much information coming at me, and so much stuff fellow railfanning guys said that I had to know, it took the fun out of the hobby. So I took a step back. I don’t want to be “overwhelmed” with a hobby as it’s supposed to prevent me from being “overwhelmed” with my disability.

After much thought about how I can enjoy the hobby without it being overwhelming, I took a step back and tried to determine what I like best about railfanning and trains. For me, I don’t think I need to know every single detail in the entire universe of every single train which goes through every single community and train-watching location that I could watch throughout the entire universe. Nope. I just want to enjoy watching the trains go by, creating videos, and photographing. I have found Classic Trains and Trains Magazine to be my favorite publications. These magazines have websites where subscribers can learn more about trains. Also, the publications of the Chesapeake and Ohio Historical Society and the Railway and Locomotive Historical Society are my favorite as they are well-written publications aiding the person new to the hobby to understand much more.

My point is to find a hobby that you enjoy. Decide what you enjoy about it and get into it. If you should get discouraged about your symptoms of CMT, get into your hobby to make time to relax. However, do not use it as an escape to a point of neglecting your health and not seeing your doctor or following their advice.

Black Friday Sales and Charcot-Marie-Tooth

“Black Friday Savings Sale!”
Photo by Artem Beliaikin on Unsplash

When I was younger, many decades ago now, I enjoyed going shopping to find the perfect Christmas presents for friends and family. In later years, especially for my wife. However, each year it became more challenging for me to go to the malls and shop. As most people with Charcot-Marie-Tooth (CMT) know, the disease is progressive and always changing adding a new challenge.

In the early years of life, I didn’t understand that these changes were happening nor did I realize that they would cause everyday tasks or stuff like Christmas shopping to become so challenging. Of course, this was back in the day when there wasn’t as much information about CMT as we only had what the doctors knew. I remember looking it up in the encyclopedia to find a short paragraph.

My type of CMT causes issues with the nerves. Yes, most of CMT does that, but some types have more nerve-based problems. Now that I understand that, I am understanding why finding a parking place and going shopping at the malls or stores have become so challenging. It literally is an exhaustingly tiring task which is a chore to do. Make sense? At first, I thought it was that I was getting lazy or even apathetic.

So what to do? Back decades ago, I would plan to get my Christmas shopping done early with the goal of having it all done by December 1 at the latest. This worked great! I didn’t have the crowds to maneuver nor was finding a parking place a challenge. I could easily go to the stores or mall and shop and leave.

However, over the years my health progressively got worse and it became more of a challenge to go to the malls or other stores too. Of course, I was hugely blessed by being able to go with someone else. I needed to begin finding a much easier way to purchase gifts.

For a few years, as physical challenges became a problem, I bought many friends gift cards to their favorite stores. That worked for most people, but there were always a few who were insulted because they didn’t understand my issues about shopping. And, I have always kept my health issues personal. Cash can work too.

A few years ago, I began to realize that shopping online was a great resource for people like me who find going to the stores very challenging. I can usually pick out what I want without too much hassle. I like that I can view the product, read the descriptions, and in some cases read reviews from others who purchased. Of course, you have to be careful with that because some people complain about everything and give bad reviews or comments just to do so. I use the comments when I am not sure if a product is what I want. Sometimes it helps. For a few people, I will ask them if they show me what they would like online. I like that I can order it and have it delivered to my home. These days, in most cases, you can save the shipping and handling charges and pick it up in the parking lot of the store. Picking up at the store keeps you from having to walk through the store and there are usually plenty of parking spaces reserved for online orders.