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.
Happy Father’s Day to all the father’s in this awesome universe. Whether you are the father of your own children, a step-father, or a man who steps into that role for a child or two. Since I am a dog and cat lover at heart, always like to wish the animal father’s a “Happy Father’s Day” too.
My father passed away seven years ago now. I miss him and think of him often so I find myself glad that I spent time enjoying his company throughout our lives together. As society seems to make fathers to be less important than they really are, I like to think of the many teachings and gifts my father gave me as a child.
A teaching I will always cherish and be forever grateful for is my father taught me about God, Christianity, and the Bible. He made sure we knew about God, and took us to church every Sunday, Wednesday night, and revival services. He made sure my brother and I knew about heaven and the choice we had to make before we died. And, that we don’t know when death will come so we shouldn’t put it off. The choice? Where we want to spend eternity. It’s our choice. God will not force His Will on us so we decide. What would it be, heaven or hell? As a Christian, I am thankful for God’s Love for me and grateful my father showed me the way.
An indirect gift from my father was his love for music. He liked to joke that I was born during the playing of Tchaikovsky’s 1812 Overture but I never figured out how he had music playing while I was being born. Anyway, he played a lot of classical music, church music, and Southern Gospel, especially Bill Gaither, around the house. Over the years, I have gotten to where I love my classical music playing whenever I am working or reading. I enjoy church music and Southern Gospel music and usually play it when doing my gardening, household chores, or cleaning my studio. Also, for me, music is a good retreat from the chaos of life. I have found that when I stress if I turn on some classical music, my body will often relax.
There are many memories of my father that I could write about for many pages of text. I hope you have an awesome day with your father. If you aren’t able to get together with your father, be sure to give him a call to him know you love him. If you aren’t speaking to your father for whatever reason, whoever’s fault it is, get over it and give him a call. Life is too short not to share the love with your father. For those, like me, whose father has gone to heaven with Jesus, reflect on the good memories of your father as the day goes on. Maybe you know someone whose children live across the country and cannot get together with them. Why not take them to lunch?
My mother passed away a little over eleven years ago. I still miss her quite a bit, especially when I start planting perennials and annual flowers around this time of year. She had the “green thumb” in our family and taught me quite a bit about gardening. Of course, every Mother’s Day, I think about her and miss her.
I inherited Charcot-Marie-Tooth (CMT) from my mother’s side of the family. My uncle, aunt, grandmother, and great-grandmother had it too. Mom was always concerned that I would let CMT discourage me and not accomplish much in life if I allowed the symptoms to become my focus. So she always, and I mean always, encouraged me to keep going and never give up.
I miss her encouragement. She would be proud to see that I took her advice and that I never gave up. A mother’s love for a child with CMT is one of the most important aspects of the child’s life.
With my mother being deceased, I won’t be celebrating the day, but I would like to wish all mothers a very blessed day. If your mother is still living, be sure to take the time to celebrate the day with her.
Happy Spring! It is finally here. Although I have to admit, that was the fastest winter season I have ever been through in my life. Maybe it’s because it didn’t really stay cold the entire season like it so often does. Also, being retired, I don’t have to go out in it to fight snow/ice to or from the office. Or, it could be as you get older, time goes by faster… I will leave that one alone.
The winter season was different for me this year too. Since we moved south, I was curious how much our weather might be different though the move was only an hour away. We have more snow and colder temperatures by up to 5 degrees. Well, we are near the mountains which affect the weather. Also, not being in town with concrete and asphalt will affect temperatures too. Last summer, we were warmer than the northern area but not as nearly as hot.
Either way, it’s Spring. The warm weather is on its way. I will be outside enjoying as much of it as I can. I hope you do too.
My favorite time of year is coming soon. Tomorrow begins Daylight Saving Time at 3 a.m. Of course, I think I will sleep right through it until time to get up for church at 6 a.m.
This is my favorite time of year because it means if we have snow or other wintry weather, it will melt sooner than in the winter months, warmer days are coming, and I happen to enjoy the extra hours of sunlight at the end of the day. Before I retired, I especially enjoyed it because I could come home from work and enjoy the outdoors a few hours before dark. Also, it meant days off in warm weather were coming soon!
Tonight before bed, turn the clocks one hour forward. “Spring Forward!”
Oh, my word! One of the worst physical feelings when living with Charcot-Marie-Tooth (CMT) is cold feet in the winter months. If you haven’t experienced it, most likely you will. It seems to be almost impossible to avoid. This followed by the challenges of getting my feet warm again.
When I was younger, probably in my twenties, there weren’t many resources to help CMT patients. You learned what you did by thinking about ways to help yourself or by asking others their opinions. Sometimes a doctor or physical therapist will have ideas. I had family members whom I could ask questions.
First, you have to realize that cold feet are not the typical cold feet that other people have. Since the nerve endings in our extremities, hence legs and feet, are not working as they should, we experience neuropathy which allows our feet to get cold.
For me, learning to keep my feet warm, and stay warm, was quite a bit of trial and error. My favorite trick was double socks. In the mornings when my feet were still warm, I would put on two pairs of my favorite comfortable tube socks. Simple enough, right?
Wrong.
When you put on the first pair of socks, be sure to align the far point of the sock with your big toe. With a new pair of socks, especially tube or athletic, you may not notice where the big toe should go. With these, you use your best judgment and adjust accordingly. When you use this pair next time, you’ll know. Next, pull the socks up toward your knee. Do the same with the other foot. Before you put on the second pair of socks, stand up. Take a minute to walk around making sure that your feet are absolutely comfortable in the socks. Also, make sure that there are no wrinkles. Once you are comfortable in the first pair of socks, put on the second pair following the same procedure.
Why do all of that for putting on your socks? You will thank me for this. If you do not do that, it’s very possible that the socks will either not be aligned properly or have wrinkles or both. At first, I didn’t do this routine, I just put my socks on and went out the door.
Within a short period of time, I was surprised to find myself having horrible pain in my feet. However, since I was out, there wasn’t much I could about it until I got home. When I got home, I found the socks to be wrinkled and turned.
The next day I paid serious attention to the manner in which I put on my socks. The pain wasn’t happening again if I could help it.
The second pair of socks can be another pair of tube socks, dress socks, or outdoor socks which keep feet warmer in the cold weather. When the sock industry began making socks for every season, reason, or whatever that could possibly be, I found pairs that kept my feet warm without a second pair. I’ll share those in another post.
I am a little late this year with my New Year’s post, having had several life events come up. However, there are a few things I would like to share so I decided to publish it anyway.
I rarely look forward to New Year’s Day because it means the month of January has started and February is not far behind. Traditionally, these two months bring colder weather, ice, and snowstorms. Since I live in a new area now, I’m not sure what weather to expect this season. I understand living close to the mountains will mean a colder and snowier winter.
Do you make resolutions for the New Year? I do. Every year that I can remember, which admittedly is limited since at my age I have a hard time remembering yesterday, I have made New Year’s Resolutions.
Why do I make New Year’s resolutions? The main is the reason is that it provides me a goal to reach in the coming months. I write them down so I can refer to them throughout the year and do a mid-year evaluation. Also, January 1 is a great place to start.
A secret to success when dealing with Charcot-Marie-Tooth (CMT) is this: By making resolutions, writing them down, and having them available throughout the year, you will be more likely to succeed even in your exhausting moments. I know for me, when the exhaustion hits, I feel like giving up. By focusing on my resolutions, I keep focused and don’t give up.
My first and foremost resolution is to learn more about God, continue attending church every week, studying, and reading the Bible. Following through with this resolution will feed the spiritual side of me throughout the year. A good spirit is a healthy one.
My second resolution is to continue loving my wife and furry kids throughout the year. I need to show them expressions of love as well as take care of myself and my responsibilities. Sometimes, I get very busy with chores and don’t always remember to show love to them. Every once in a while, I forget, or skip, walking my dog as well as show her affection. I’ll focus on sharing love first, chores later.
A third resolution which I renew every year is to focus on fighting CMT as best that I can. Basically, this means I will keep doing the exercise programs which worked for me over the last year. The program I developed has been successful in keeping me one step ahead of the CMT progression.
This year, I am adding a new resolution. Last year, I returned to my hobby of reading. I was surprised when I realized that it’s been quite some time since I read a book. I managed to read four books by year’s end along with numerous railfanning magazines about railroad history. My chiropractor mentioned that reading is a very good habit for a CMT patient to do. Apparently, the nerves which CMT effect, and lead to problems in our extremities, can possibly affect the brain too. I didn’t know that and haven’t read about it yet. However, if simply reading is going to help, why not?
A final note: When I make resolutions, I do my absolute best to follow through with them. However, stuff happens which may interfere with my goals. Instead of beating myself up or considering myself a failure, I pick up where I left off and go from there. Failure would be completely abandoning the goals.
Several years ago, I heard a cute Christmas song sung by a group of children at my church. The main verse or thought of the song was “Happy Birthday Jesus!” Over the years, I have known some friends who use the greeting and have grown to like it quite a bit. After all, Christmas is the Birthday of Jesus.
The Birthday of Jesus was an incredibly phenomenal Gift from God to man. He came to earth, lived 33 years teaching about God, and was crucified on a cruel cross to save man from his sins. While it is as simple as that, there are a few things you must do to receive God’s Forgiveness. First, you have to believe in Jesus, confess your sins, and begin following Him.
If you would like to learn more about Jesus, God, and the Bible, please visit Peace With God.
So Happy Birthday, Jesus! I am happy you were born.
It’s not that I am a Scrooge or an antisocial curmudgeon that wants everybody never to party again. Or that there should never be office parties. Well, maybe as an introvert, I am a bit anti-social but I think that comes along with my personality.
When I was working in an office setting, I kept my health issues to myself. The reasons for that will be shared in another post. However, doing so caused me to be wary about many known factors I have with Charcot-Marie-Tooth (CMT) which can be so embarrassing that I prefer to avoid any situations or events which could cause them to be displayed.
What factors? These:
The first one is my inability to ALWAYS control what my feet will do. As you might know too, I can be walking when all of a sudden I trip over nothing. Yes, nothing. There is nothing on the ground. As far as I can tell the ground is level. However, I have tripped on nothing repeatedly. It’s usually pretty funny to the observer when I am doing my best effort to recover without falling down on the ground. I can just see myself with a full plate of food, or two, finding a place without looking for it to trip and throw my food across the room. It would only be funny if the food fell on my least favorite co-worker or maybe the annoying boss, but I didn’t say that.
The second one is my inability to ALWAYS control my hands. While most of the time, I don’t have much trouble with them, there are moments when I drop things. These moments seem to be increasing as time goes forward. I don’t like being embarrassed by doing some perceived as stupid, no one does. So trying to balance a plate of food while selecting what I want to eat, trying not to drop the utensil used to get the food to my plate, and walking forward without stumbling is not on my list for a fun activity.
The third one is the inability to balance my plate of food, put food on it, and talk to someone else while doing it all. Crazy sounding isn’t it? I have never understood those people at potluck luncheons or social events who can talk to everyone about everything while simultaneously placing food on a plate without dropping one little bit. I would have food everywhere with maybe a little on my plate.
My guess is the deterioration of the nervous system from CMT is the culprit behind my dislike of these social events. It is something I can’t help nor is there much I can do about it. At work, I would do whatever I could to avoid the event including taking the day off or offering to run the office while the rest enjoyed their time. That was always my favorite thing to do. However, I have yet to find a “fix” to this problem. Avoiding them isn’t always the best answer because I think it offends people but that’s really the best I can do.
I will consider attending a social event with pot luck luncheon, or whatever they are called these days, with my wife. She is good about helping me with carrying my plate and drink. She seems to have learned to manage the fine line of helping but not embarrassing me. Though, to be honest, I’m grateful for her help. She isn’t doing anything as embarrassing as I would be by tripping and throwing food all over the place. My luck, it’d be on someone I didn’t like to start with.
Thanksgiving is a great day to reflect on why we are thankful. Actually, we should be thankful every day for all the blessings we have been given.
As a man with Charcot-Marie-Tooth (CMT), I have found myself paying more attention to the disease I fight daily than being thankful for what I have been blessed with. Which isn’t good for me to do. There is more to me and in my life than the constant battle with CMT.
With that in mind, I started many years ago trying to focus on what I have to be thankful for and concentrating on that. Before I was married, God blessed me with a few great friends, a girlfriend who genuinely cared about me, a church family, a condominium to live in, a career, and a safe car to get me to and from work and wherever else I needed to go.
I met a beautiful lady who loved me and I loved her so we made it official by getting married. God has blessed us throughout the years recently celebrating twenty-five years of marriage. She has been a tremendous help to me as I go through the “fun” of CMT. God has shown me the blessing of enjoying His Creation through hikes on nature trails, seeing the beauty of sunrises and sunsets, and working in my wildlife garden. I have been blessed to see the unconditional love of my dogs and cats throughout the years too.
Blessings and reasons to be thankful aren’t always “things.” Though there isn’t anything wrong with being thankful for those, it can be something as simple as seeing a beautiful bird or flower or hearing your favorite song on the radio.
Developing a “thankful” mindset helps me as I go through the many challenges of CMT. This post points out a few ways I practice thankfulness throughout my life.
