CMT – Page 8 – Isaiah Jacobs

Finding A Hobby, Part 2

“NS 8081 leads through the Shenandoah Valley”
Photo by Brian Breeden on Unsplash

As I mentioned in my previous post, Finding a Hobby, Part 1, I think people who have a disability, especially Charcot-Marie-Tooth (CMT), should find a hobby to occupy their time helping to keep their minds from focusing on their health problems. Hobbies distract from thinking about the aches, pains, and what you cannot do. I started using hobbies to deter my attention several years ago and will probably continue forever. It has allowed me to explore the world!

When I retired, I moved to an area near where I grew up. On moving day, I was pleasantly surprised to hear train horns in the distance. I had forgotten about the trains. How could I? There weren’t trains near my previous home, I was busy with life including my marriage, a career, and trying to stay ahead of CMT.

After settling into my home, and hearing more train horns, I became interested in seeing trains roar by so I started exploring the area. I quickly found places where I could safely, and legally, watch trains go by and photograph too.

I became interested in trains as a young boy by spending time every summer at my grandmother’s house in West Virginia and living near the Southern Railway. She lived across the street from the mainline of the Chesapeake and Ohio Railway. To me, besides hanging out with my grandmother, the trains were the greatest highlight of my summer. It didn’t hurt that I lived not far from the railroad tracks of the Southern Railway where I often heard train horns, including whistles from steam engines.

So I dove deep into the Railfanning hobby doing as much as I could possibly do. I met some great people who enjoyed the hobby immensely. I learned how to chase trains, where great train watching locations are throughout Virginia, West Virginia, Maryland, and Pennsylvania. I found some great websites, a few historical societies, and several magazines which provided me with a wealth of railfanning information about trains and railroads. I was hooked. I learned how to use technology to determine when a train could be coming by and how to get to the tracks in time to see it.

Since I cannot always drop what I am doing to go watch trains, I found two great streaming websites where I can watch trains from around the country. One offers streaming from other countries. I subscribed to Railstream and began streaming trains on my devices any time I want. The other site, which I haven’t subscribed to yet is Virtual Railfan. Virtual Railfan offers free views of some cameras on their YouTube channel too.

I enjoy this hobby immensely. However, it wasn’t too long before I was overwhelmed. This happens with CMT people. A hobby shouldn’t overwhelm. So much to learn, so much information coming at me, and so much stuff fellow railfanning guys said that I had to know, it took the fun out of the hobby. So I took a step back. I don’t want to be “overwhelmed” with a hobby as it’s supposed to prevent me from being “overwhelmed” with my disability.

After much thought about how I can enjoy the hobby without it being overwhelming, I took a step back and tried to determine what I like best about railfanning and trains. For me, I don’t think I need to know every single detail in the entire universe of every single train which goes through every single community and train-watching location that I could watch throughout the entire universe. Nope. I just want to enjoy watching the trains go by, creating videos, and photographing. I have found Classic Trains and Trains Magazine to be my favorite publications. These magazines have websites where subscribers can learn more about trains. Also, the publications of the Chesapeake and Ohio Historical Society and the Railway and Locomotive Historical Society are my favorite as they are well-written publications aiding the person new to the hobby to understand much more.

My point is to find a hobby that you enjoy. Decide what you enjoy about it and get into it. If you should get discouraged about your symptoms of CMT, get into your hobby to make time to relax. However, do not use it as an escape to a point of neglecting your health and not seeing your doctor or following their advice.

Black Friday Sales and Charcot-Marie-Tooth

“Black Friday Savings Sale!”
Photo by Artem Beliaikin on Unsplash

When I was younger, many decades ago now, I enjoyed going shopping to find the perfect Christmas presents for friends and family. In later years, especially for my wife. However, each year it became more challenging for me to go to the malls and shop. As most people with Charcot-Marie-Tooth (CMT) know, the disease is progressive and always changing adding a new challenge.

In the early years of life, I didn’t understand that these changes were happening nor did I realize that they would cause everyday tasks or stuff like Christmas shopping to become so challenging. Of course, this was back in the day when there wasn’t as much information about CMT as we only had what the doctors knew. I remember looking it up in the encyclopedia to find a short paragraph.

My type of CMT causes issues with the nerves. Yes, most of CMT does that, but some types have more nerve-based problems. Now that I understand that, I am understanding why finding a parking place and going shopping at the malls or stores have become so challenging. It literally is an exhaustingly tiring task which is a chore to do. Make sense? At first, I thought it was that I was getting lazy or even apathetic.

So what to do? Back decades ago, I would plan to get my Christmas shopping done early with the goal of having it all done by December 1 at the latest. This worked great! I didn’t have the crowds to maneuver nor was finding a parking place a challenge. I could easily go to the stores or mall and shop and leave.

However, over the years my health progressively got worse and it became more of a challenge to go to the malls or other stores too. Of course, I was hugely blessed by being able to go with someone else. I needed to begin finding a much easier way to purchase gifts.

For a few years, as physical challenges became a problem, I bought many friends gift cards to their favorite stores. That worked for most people, but there were always a few who were insulted because they didn’t understand my issues about shopping. And, I have always kept my health issues personal. Cash can work too.

A few years ago, I began to realize that shopping online was a great resource for people like me who find going to the stores very challenging. I can usually pick out what I want without too much hassle. I like that I can view the product, read the descriptions, and in some cases read reviews from others who purchased. Of course, you have to be careful with that because some people complain about everything and give bad reviews or comments just to do so. I use the comments when I am not sure if a product is what I want. Sometimes it helps. For a few people, I will ask them if they show me what they would like online. I like that I can order it and have it delivered to my home. These days, in most cases, you can save the shipping and handling charges and pick it up in the parking lot of the store. Picking up at the store keeps you from having to walk through the store and there are usually plenty of parking spaces reserved for online orders.

Happy Thanksgiving! Be Thankful!

This year, 2020, has been a very rough year for many people. However, despite some of its challenges, there can be some positive things if you look for them. I have had a rough year too, but I focused on the positive. Here are a few thoughts.

While my Service Dog passed away this past summer season. He was my bestest friend going everywhere with me. He helped me tremendously with the many challenges of Charcot-Marie-Tooth (CMT). After quite a bit of researching, searching, looking, meeting and greeting, applying to adopt, I have been able to find another dog who will keep me company, take me for long walks, and be the “dog happiness” in my life that only a dog can provide. Eventually, she will be able to help me with my health struggles. I will share more about that later. It is an example though of something positive this year.

Another positive to be thankful for this year is for my wife and her health. She has had some serious health problems in 2020. I am thankful for her positive attitude during the doctor’s visits and subsequent treatments. She has a faith in God which truly was shown throughout her struggles. Also, I am extremely thankful that her treatments were done close to home without any trips to a major city. My concern is my challenges with driving and having to take her to the city. Though I would have done it, I am thankful I only had to do it once.

During the medical treatments for my wife. our church family and a few friends helped make the situation so much easier by being there for her and one family took to us to dinner just before each treatment. It’s one of those PRICELESS things for which I am thankful. Each time, they brought a smile to my wife’s face. For that, I am thankful.

Yes, 2020 has been very challenging. It seems that every day brought new frustrations. BUT, as I said, look for the positive! It might take a few minutes to find it but you will.

“May you have a blessed Thanksgiving
with your family and friends!
God Bless!“

Saluting Our US Armed Forces Veterans

Daylight Saving Times Ends Sunday, November 1

Time flies these days even in the midst of a pandemic. It seems like only yesterday that we “sprang” our clocks ahead one hour in March. Now, we are “falling” back gaining the hour lost back.

What will you do with that extra hour? When I was younger, I liked to stay up later because I would get the hour back when the time changed. Now that I am 57, that is not the case! I might even go to bed earlier just to get the extra sleep.

Please share in the comments how you will use your “extra” hour.

In the meantime, remember to set the clocks back one hour!

Happy Labor Day!

Years ago when I worked in an office before I retired, Labor Day was my least favorite holiday of the year. Why? Because it meant school was starting, traffic would get worse, the awesomely hot weather was going away soon and it’d be harder to get a day off to work to enjoy being outside. The phrase “End of Summer” is one that I never liked because I never want summer to end. Now that I retired from an office job, summer isn’t over until the first frost followed by really cold temperatures.

Though I work for myself after retiring, I typically do not get “holidays” per se. I would really have to plan to do it which I aim to do for Thanksgiving and Christmas. Some will say “every day is a holiday when you are retired.” I guess that depends on what you are doing.

If you are off today from work, enjoy yourself. Surround yourself with family and friends while you have them to do it with! Be thankful for the job and work that you do!

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.