When I was younger, the draft was still happening. I was a bit afraid of being drafted and serving. To be honest, at the time I did not know why nor understand except that I knew I was different from the other guys. I didn’t realize that Charcot-Marie-Tooth (CMT) was affecting me in the ways it did. Had I been drafted, I would have gone but they would have found I was not physically-able to serve.
Over the years of life, I appreciated those who served as I grew up in an area where quite a few of my neighbors and friends were with the U.S. Armed Forces in one way or another. I remember many stories of active duty or serving in the offices.
Also, I remember losing friends along the way because they gave the ultimate sacrifice. Many of them would have told you, if they could, that they died doing what they loved to do “protecting our freedoms.” Not too many years after I graduated from high school, a friend I had graduated with was killed in a bombing overseas. Broke my heart.
Today, I want to honor those fallen heroes to worked to protect our freedoms and paid the ultimate sacrifice. Also, for me, I feel like I can never ever say “thank you” enough to anyone who has spent their lives serving in the United State Armed Forces. So, I want to thank them today too.
Mom. It’s a difficult word to describe these days. When I was growing up, my mother raised me along with my father. However, there were many women in the church who I called “mom” along the way because they were special to me. They weren’t my mom but they cared enough to watch out for me.
Today, as I wish “Happy Mother’s Day” I wish it to everyone who has had the opportunity to raise another life. To care for someone else and to love them as you do.
It’s my 57th Birthday! I don’t normally do much to celebrate the day but as I grow older, I have decided to celebrate these milestones. Each year that I reach has become milestones because the doctor in my youth diagnosing Charcot-Marie-Tooth (CMT) said I would not be walking much 40! Well, I am.
When I was in my 20’s I learned a trick to help me to get through the challenges of CMT. The trick is to celebrate or acknowledge accomplishments as I fight physical battles with a gift or celebration. Of course, there needs to be a goal set that should be challenging. The goals have included completing a series of physical therapy sessions without skipping or canceling one, swimming more laps and surviving it, following a water workout regiment and being successful, and walking the dog a set amount of miles. You can create or determine the gift or celebration at the time of creating the goal or once you reach it. I’ve waited until I reach the goal and go from there. Most of the time it is something simple like a few CD’s I’d been wanting or something from my railfanning interests like a book. Sometimes, it’s a big celebration.
When I turned 55, I celebrated it by taking a trip to the western Pennsylvania area to see a Chessie System locomotive which CSX Transportation had recently repainted as well as visiting the Horseshoe Curve National Historic Landmark in Altoona, PA. A week of trains was awesome. I celebrated the day by taking the stairs up the side of the mountain at Horseshoe Curve just to prove to myself and to celebrate I can do it. After all, I wasn’t to be walking at 55! This trip took planning to make it special.
For my 57th, I do not have anything special except to do what makes me happy! Unfortunately, due to COVID-19, I will not get to go to church today. We usually go out to dinner with the church family after the Worship Service. I will miss that on this day. However, I might have to walk out on my deck naked, jump up and down, and shout ‘Happy Birthday!” a few times. But, I will celebrate the day taking a very long walk with my dog. He makes me happy and enjoys my company. I might have to grill a steak or something and drop a piece for him.
For me, birthdays are personal. I have never ever been one who enjoys parties or gatherings with other people, especially for my birthday. When the office would celebrate the birthdays in a month, I always dreaded it. This is why I will pay attention to what makes me happy and celebrate my birthday as I like.
Oh, and, this day acknowledges 17 years of walking past age 40!
I hope you are doing well with all the craziness of COVID-19. Before I forget, the Charcot-Marie-Tooth Association (CMTAUSA) has shared this post for us, COVID-19 and CMT. Another post which is from the Hereditary Neuropathy Foundation has created a page with resources and a webinar. Check it out by visiting CMT & COVID-19. There are probably other resources but these two are ones I have found most helpful.
I am not expecting too many issues directly from COVID-19. I have practiced, for various and sundry reasons, social distancing for many years. When I retired, I really relished the thought of sitting in my sunroom or photography studio writing or working on a creative project. Of course, this included walking my dog quite often. More recently, I added cuddling my cat! All of that while my wife works part-time at a local church. Also, I have practiced the basic hygiene stuff everyone is repeating repeatedly and more often than not for all of my life. Nothing new there! And it should be nothing new to anyone except maybe really young children who are still being taught by their parents.
Unfortunately, however, I have started to have some CMT problems which have been prevented until now. I have used a regular Deep Water Aerobics routine for nearly fourteen years to combat nerve pain, stiffness, soreness, and to attempt to slow the progression. During this time of not being permitted to attend my Deep Water Aerobics classes, I am learning how beneficial the classes are and cannot wait until they return.
Water therapy is one of the best exercises you can do. Since I can only walk so far in one day, usually a max of 2.5 miles sometimes more, a water therapy such as Deep Water Aerobics adds the extra benefit of moving my feet, legs, arms, and hands in an exercising way which does not hurt me. Of course, you have to be comfortable in the deep water. However, you are not participating in the class without a life jacket around your waist. I happen to use ankle and wrist devices to help exercise and cause more resistance in the water. One class I took, we had to be able to do the class without equipment but no one ever tested us. However, we had a few sessions which required us to workout without them. Talk about a challenge!
I praise the effects of Deep Water Aerobics because that’s where I started and prefer to do my exercises. There are other classes in Water Therapy which might be better for you. I highly recommend a discussion with your doctor and with someone who instructs water therapy or water aerobics classes before you begin any regiment.
Keep smiling through this and we will get through it.
Ahhhhhh! Spring! I am so happy it is Spring! My winter was nowhere near what was forecasted and saw very few snowstorms. Though last November we had snow but it melted off quickly. It fooled me as I was anticipating it to be the beginning of a very long winter.
We start this spring with a CO-VID-19 pandemic outbreak. Stay safe!
Happy Spring! We will get through this and be on to fun Spring activities soon!
“Man Massaging Neck” Photo by Toralf Thomassen on Unsplash
A few weeks ago, I had my usual 3-week visit to the Chiropractor. It was my usual 3-week appointment for adjustments messed up or out of alignment because of my feet and the fact that, despite my feet, I keep myself pretty active!
For once, I arrived at my appointment without any pain. Anywhere! Amazing! Sometimes that happens but not as often as I what I would like. I keep trying doing the things I do and hoping above all hope that I will get better.
What are those things? I walk my dog every day. Some days are further than others but we always go for a walk. I take a Deep Water Aerobics class at the local Aquatic Center twice a week. I visit a massage therapist every 3 weeks and as I mentioned previously, the Chiropractor every 3 weeks. These help me to manage my pain considerably well.
During the visit with the Chiropractor, he did his usual routine of adjustments with me and concluded by saying, “WOW! I believe you are getting better!” He caught me off guard especially when he repeated it. He stated that he especially noticed my flexibility being better too.
While I know the medical world says Charcot-Marie-Tooth is uncurable. There is nothing they can do for me. Okay, I get that. However, I believe God can do other things if He so chooses. Also, He will give us wisdom and guidance to do things
When I hear something positive from someone about my health, I grab it and hold onto it. It might be a small comment or a kind word. I hold on it. Why? It’s encouraging to know that all the exercising I have been doing is helping me to look better along with function and feel better.
Yes, I typically ignore negative comments unless it’s something from someone I respect. People I respect will not say something negative unless it is something I really need to know.
When I was younger, Valentine’s Day sometimes was a lonely day. Sometimes, I would be dating a girl and we’d go out or do something. But, many times not.
I wish that I had realized back then what I know now or learned along the way. Valentine’s Day isn’t just about being loved or loving your girl or boyfriend. It’s a day to celebrate love.
The greatest truth I learned along the way is that God loves me no matter what. He is always there for me and will ALWAYS love me… even when I mess up really bad.
Thankfully, I will spend today with my wife and two boys. We believe in saying “I love you!” quite often and doing special things for each other all the time. Today will be pretty much a normal day but we will stress our love with a nice dinner somewhere.
I will thank God for the love of my family and friends today too.
I hope and pray that you have an awesomely blessed day!
“Merry Christmas” (C) Isaiah Jacobs, All Rights Reserved
I pray that you will have a blessed and very Merry Christmas!
I will be spending the day sharing a few presents with my wife and taking my father-in-law to lunch somewhere. After the loss of my parents, brother, and mother-in-law, Christmas has been a challenge because it brings back so many wonderful memories. Now, the celebration feels like it’s always missing something. However, we celebrate and enjoy our time together.
And, after lunch with my father-in-law, my wife and I will head home and probably enjoy a nap!
I was never, still aren’t, one of those people who get their feelings hurt easily or as some say, “carry their feelings on their shoulders waiting for them to be knocked off!” As a child, I wasn’t quite as thick-skinned as I am now but I wasn’t one those “sensitive” kids either. However, there were, and still are, times when – I get my feelings hurt.
I remember the days of being a young child and how rude other children were. They were often cruel too. I can remember being called names, nothing profane mind you, but still. I remember being laughed at because I could not do most of the P.E. requirements. I ran funny. I walked funny. I couldn’t do pull-ups. I couldn’t do sit-ups. I was always the last one chosen to play on a team’s side. The list could go on. I knew I was different, but, at the same time, I wasn’t sure why. Looking back, I cannot tell you all the things which happened or what was said or done, but it seemed like I was always getting my feelings hurt one way or another. Most of the time, it was something that I could not prevent.
I’m not sure why kids liked to tease me. Sometimes I think it is because I was funny looking or weird but they were too. I just never pointed it out or really paid attention to it. Maybe it was my feet. When I was younger, they started turning and have been doing it ever since!
I remember hoping or thinking that one day when I was older, the teasing, rudeness, and cruelty would stop. Ha! That’s not happened yet. The teasing and annoying behaviors went through college and even my adult years. Fortunately, I learned at an early age to love myself. If I didn’t love me, then nobody else would… and frankly, I really wanted a girl to fall in love with me despite Charcot-Marie-Tooth- but that’s another story for another time. I wasn’t much on hanging out with the guys so I didn’t give that much attention.
As an adult, I find one of the more rude things people like to do is make decisions for me. For instance, they do not invite me to do something because they know I have health issues and do not think I can do it. Well, that’s not for them to decide. A friend would not allow me to mow his yard, saving him time and money, because he was afraid I would fall. I told him it isn’t his fault if I fell and the work is good for me. It helps me to keep moving. Another decided that standing to assist at a funeral was too much for me. That cut deep- really deep. Depending on who it is, I will push myself to do something with someone or for someone because I care about them. Sometimes you have to bear some pain for someone in your life.
For me, my parent’s were a great support. Since I am the oldest, I’m not sure how they knew to tell me they “loved me” often. Somehow, they did. Even on the worst days, when the world would be taunting me, the fact that they loved me often rang in the back of my mind. As an adult, it did too. This fact, I believe, helped me to rise above the others and be more successful in life than if I hadn’t heard that from my parents.
After years of not being asked to do something because someone thinks I cannot do it, rather than asking me if I can or would, being the last to be picked to play on a team, not having much interest in sports because I cannot participate, I have become pretty introverted. I have tried to ignore “being left out” or the “things people do” but it isn’t always easiest.
To me, the challenges of living with Charcot-Marie-Tooth add to the frustrations. There isn’t anything I can do about it so I’ve learned to love and accept myself for what I am. Also, I focus on what I can do instead of what I cannot do. I tend to surround myself with friends who believe in me and will not “stifle” me as so many try to do, intentionally or not. This has helped me to live a happy life.
Of course, getting my feelings hurt is just a part of life. From what I hear, everyone goes through it or has these issues. Learning to get past this obstacle is a challenge but it can be done. I have found focusing on God, the people I love and support me in my challenges and are not obstacles, and, of course, the love of my dog and cat.
Parents love your children and tell them often. Friends of someone with CMT, allow them to be themselves. Help them when they ask or just listen when they need it. Be a friend, not an obstacle!
“A Tired Party Dog” (C) Storyblocks, Used by Permission
Happy birthday to ME! Happy birthday to ME! Happy Birthday to ME! Happy birthday to ME! Every year on my birthday I like to celebrate that I have made it another year walking and enjoying life. I am now 56 and I am thankful for every moment God has given me.
Sometimes with the problems and issues, I have with Charcot-Marie-Tooth (CMT), I find life challenging. It seems there is never an end to them or new problems begin just as I have adjusted to the others. Sometimes I have to find assistance from a doctor. Sometimes it’s a physical therapist. Sometimes both. Oh well, that is the life of the CMT patient.
However, it’s NOT the end of the world. I learned to find the good in every day decades ago. My life is blessed with God, my wife, my dog, and my cat. Just like the past year, I will enjoy the upcoming year as well.
