It seems like I am always saying this these days, WOW! time really flies by! They say, as you get older time flies faster. I’m inclined to believe it. Only yesterday, I was changing the clocks for Daylight Saving Time and now, I’m turning them back.
Having moved to the country earlier this year, quite a bit has changed. I’m hoping I remember to turn my clocks back tomorrow before I go to bed. Usually, I get up and start resetting the clocks back which are least used during the day. That way, if I forget, at least I will not miss church on Sunday.
I had put off being diagnosed with Charcot-Marie-Tooth (CMT) as long as I could. However, the pain in my feet and lower legs had gotten so bad by age 22, that I needed to find out if it was CMT, or something else.
The doctor gave his diagnosis and I was right as expected. It’s CMT. He gave a prognosis of not being able to walk after age 40, would be using a wheelchair, that I should never run, should not do this, should not do that, and the list went on and on. Of course, being a young man and in college, sex was always on my mind but the doctor didn’t say much about the subject.
I left the doctor’s office pretty upset and disappointed. It seemed that my life was crushed or over. Everything was falling apart. I wanted to finish college, find a good job, find a wonderful woman to marry, and live happily ever after in our 4-bedroom home with 2.5 children and a dog. That seemed to be disappearing.
Most of the guys I knew or had seen in classes at college were in great physical shape. They were athletic, happy, and able to do just about what they wanted to do. I wanted that. However, it wasn’t going to happen.
When I look back, I believe that God had heard my silent cries of disappointment, and, hey, maybe even angry tears. I didn’t blame Him as it just never really occurred to me to do so and probably because to me, that was disrespectful. I don’t remember praying about it either. I wouldn’t see the extent of what God heard, saw, or felt until I went back to college in the fall.
After the diagnosis, I went back to what I was doing in life. Playing, working, running, and doing whatever. I went back to college in the fall as I wasn’t going to give in to this disease!
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.
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.
Not too many years after High School, one of my buddies and most popular guys in the school, lost his life while serving our country. I have another friend who suffered mental health issues after his years of service and have had the honor of meeting many men and women who served our country well. To them, and their families who served by supporting their Service Member, I say a huge “Thank You!”
Did I serve? No, Charcot-Marie-Tooth was evident in me so it prevented me from military service. I think my circumstance caused me to be ever so grateful for those who are willing to stand up and serve.
Today, as you celebrate a day off from work and school, take the time to say “Thank You” to a service member. When I have done this, usually I get a response of “You’re Welcome!” along with a huge smile.
A Happy Mother’s Day to mom’s everywhere! While growing up, I had several mothers! The woman who gave birth to me was my “real” mom yet I had several ladies at church who I called “mom” because they were close friends of mine and our family. There were times when I wished I didn’t have so many moms because it was hard to get away with anything. However, looking back, I am grateful for their love for me too.
My mother passed away ten years ago. Yes, it makes Mother’s Day a little rough as I miss her. However, I am blessed to have some wonderful memories of her and will think about those. It would be nice to have her around to celebrate the day with, but she is in Heaven with Jesus so I wouldn’t want her to come back to this world for anything. She is rejoicing in having no more pain or suffering.
May God bless your day with your Mother. If your mom has passed away like mine has, reflect on the memories. Or, maybe celebrate the day with those “moms” in your life who influenced your life.
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.
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.
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!
A-h-h-h-h Spring! According to the calendar, the first day of Spring is next Saturday, March 20! Tomorrow begins Daylight Saving Time once again! For that, I am happy! Why? It usually means the really cold weather is gone, no more snow or ice storms, and warmer weather is on the way. We have had some snowstorms in late March, I remember a few in early April too, but they melt away very fast- a great way to celebrate snow, here today and gone tomorrow.
Being retired from a career of 33 years and having more time at home, my schedule has changed to where I can be outside more than ever before. The time change means the days will be warmer soon and I can get out with my dog to enjoy whenever I want which is a blessing!
