Charcot-Marie-Tooth – Page 8

Happy Independence Day!

Today, I want to write to say “THANK YOU” to everyone who works, or has worked, diligently to provide and protect our freedoms.

Everywhere I turn these days someone is complaining about our country. Unbelievable to me. There is NO other country in this entire universe where you have as much freedoms as you do in the United States of America! And, you complain? And, loudly about it?

This bothers me quite a bit because I have grown up in an area where the federal government has many offices and several military installations. I have known many people throughout the 50 years I have lived here who were working sometimes around the clock to protect us! Also, to give us the freedoms we do.

Unfortunately, I have known, and had a few friends, who lost their lives while serving in the U.S. Military to, again, protect our freedoms. Those who died often left a family behind to defend for themselves.

Why do they do it? Mostly because they love our country and want to serve. It is certainly not for the pay and benefits. They LOVE our country. All of it. Even those who ungratefully complain.

If I could, I would shake the hand of everyone who has ever worked to protect our freedoms or come to our rescue when we needed help. Unfortunately, I cannot because it is too many people and I don’t know them all. So I will say with my loudest voice and happiest tone I can:

THANK YOU U.S. ARMED FORCES and FIRST RESPONDERS!

A YouTube Channel about CMT!

“A Charcot-Marie-Tooth YouTube Channel”
Photo by Christian Wiediger on Unsplash

Recently, I found a YouTube Channel where a lady with Charcot-Marie-Tooth (CMT) is sharing her experiences.

As you probably know, CMT affects us all differently even within one’s own direct family. Knowing that, I would like to share with you a YouTube Channel created by Bethany Meloche!

Bethany is an author, CMT-Advocate, and Speaker who shares her experiences by video to help you with your life struggles being a CMT patient. I have already started doing some of her exercises for my hands.

Please visit Bethany Meloche’s YouTube channel at Join My CMT Journey! Subscribe to her channel to receive posts in your email Inbox.

Remember Our Fallen Heroes!

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.

Happy Mother’s Day!

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 Birthday and I’m Celebrating!

“A Black Dog”
Photo by Ken Reid on Unsplash

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!

COVID-19, CMT, and Me!

“COVID-19”
Photo by Brian McGowan on Unsplash

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.

Happy Spring!

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!

“I’m Getting Better?”

“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.

Happy Valentine’s Day!

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 My Friends!

“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!