A friend of mine shared this Scripture with me a few weeks ago. I have several favorites and may have to add this one to mine.
As a man with Charcot-Marie-Tooth which seems to almost change daily, and not for the better, trusting in God and placing ALL of my cares on Him has been the greatest part of my life.
If you would like to learn more about being a Christian, please visit “Peace With God!”
“For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.” – John 3:16
Today I celebrate the Resurrection of Jesus. He died on a cruel cross on Good Friday and rose from the dead on Easter Sunday for our sins so that we may have eternal life with Him in Heaven.
My Christian faith, the Bible, Jesus Christ, God are the foundations of my life and helps me incredibly with Charcot-Marie-Tooth. I could not handle with the pain, frustrations and aggravations without God’s help all th way.
If you would like to learn more about God’s Plan of Salvation for man, please visit Peace With God.
I love the new year. To me, it gives a chance to evaluate what went right and what went wrong in the last year health-wise, that is. When I do this, it gives me the opportunity to realize where I can improve myself this next year.
For someone with Charcot-Marie-Tooth, setting health goals might seem a little silly or maybe even stupid. No, not at all. I can have goals to try to reach, but, I need to be wise with what goals I set. For example, in 2017, I walked 312 miles. Of course, this was with the encouragement of my dog! I set a goal to walk further than that. I think I set it to be around 350 miles. Surprisingly, I made it!
The setting of a health
Another goal I realized in 2018 was to take advantage of the Deep Water Aerobics classes on a regular basis. The classes are offered 5-days a week. Since I tend to “burn out” on repetitive activities like taking the class every single day but Sunday, I planned to take the class every Tuesday and Thursday when I am in town. Maybe on Mondays when I might miss one of those days. I succeeded in attending my classes and will plan it again in 2019.
Health goals, as I call them, for someone having Charcot-Marie-Tooth needs to be reasonable. For me to decide in 2019 to walk 500 miles is unreasonable. It is 150 miles over what I did in 2018. I might aim for 375. An easy way for me to think about it is a mile day and a little more here and there. However, if I aim too high and get too ambitious, I could hurt myself and get discouraged with not making my goal. Too low and I might feel like I didn’t accomplish anything.
An important aspect to keep in mind, is if you miss a day or two, don’t stress about it, just pick right up and get going again. For me, it took many years to reach the about to walk very far- it did not happen overnight.
Using an app on your Smartphone to track miles walked and any other exercise is really a great way to track your success.
As always, talk to your doctor about health goals and any, and all, exercise routines. Each Charcot-Marie-Tooth patient can have different symptom and situations. Your doctor will know what’s best for you.
When I was a young boy, I did not know that I had the Charcot-Marie-Tooth disease. I was an adventurous and curious kind of kid who never really got into trouble unless you call accidents while exploring my universe trouble.
I loved exploring the dirt hills on my bike at the end of the street which wasn’t far where we lived. There were great trails which lead to these hills and you could do jumps! A few friends were better than me but it was still fun. I loved to make forts in the woods too. I remember one we made next to this huge tree. We had old carpets and blankets spread out to create a floor so it would be our place to hang out. We leaned several good size boards against the tree to create a roof. It was fun.
However, I knew something wasn’t right and, at times, I was embarrassed about it. When it came to those infamous P.E. classes, I wasn’t able to run and jump hurdles like the other kids. I wasn’t able to pull myself up to do pull-ups or even do sit-ups. But, fortunately, what the other kids said, didn’t bother me enough to “scare” me for life or make me want to seek vengeance I just went on with life.
As I grew older, I knew or wondered if something wasn’t right because I was uncoordinated and had no interest in any type of sports. While other boys my age were strong and athletic, I didn’t quite develop as they did. It wasn’t something I focused on though but there were plenty of times of embarrassment.
When I look back at those days, I do not have any horrible memories of any mean or rude things other kids did to me. I’m not sure why I don’t because there were plenty I could remember or that could have really hurt me. I think the fact that I knew my parents loved me, whether I knew it from them saying it frequently or if I thought about it subconsciously, I’d have to say it kept a good positive attitude in me knowing it.
In my humble opinion, whether your child has Charcot-Marie-Tooth or not, you should verbally tell them, “I love you!” every day.