Our Blog Posts – Page 8

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!

Find a Hobby!

“Audiophile, Stereo System”
Photo by Brett Jordan on Unsplash

I believe hobbies are a really great idea! They can help to keep you busy and not focusing on what Charcot-Marie-Tooth (CMT) is doing to your health. In some cases, they can help you feel better physically and mentally. The fun part is the discovery of what you enjoy!

For me, this was a challenge as I found I have many interests that make great hobbies. Over the years, I dabbled in many hobbies but really didn’t specialize or become really good at any particular one. Mostly, I was limited in free time as I worked a career with a commute of an hour each way, spend time with my wife, dog, and volunteering at church. However, what free time I had, I needed something to enjoy. Before you go all out to pick a hobby, a few things must be considered first.

What do you enjoy the most in life? What keeps your interest and you want to learn more? For me, I love being outside in nature. Pretty much whatever hobby I choose, it’d be great it is was always outside. Unfortunately, CMT does limit some outdoor ability. For example, being outside in cold weather for long periods of time isn’t something that I can do because of the neuropathy in my legs, feet, arms, and hands. BUT, that doesn’t mean I cannot enjoy the outside. Snow skiing, long winter hikes, snowboarding, and the like are not a choice- at least for long periods of time. For me, that doesn’t mean that I cannot take full advantage of the warmer weather and sneak in some activities in the colder.

Having a love for nature, being outside, birds, wildlife, and warm weather, I took up the hobby of landscaping and gardening. At first, it was painful to use garden tools, carry bags of topsoil or Miracle-Gro, and plant any plants including simple annuals. What I found odd though is I enjoyed being outside enough to push myself to enjoy the gardening as painful as it was. I was definitely sore at the end of the day and the next day. However, I noticed I felt better than before I started the project usually within two days. Interesting. Over time, I found this to be a hobby that is great for me.

For me, every hobby cannot be a physical challenge like yard work and gardening. I need something for those days when I am in pain or uncomfortable and need to relax. However, I found that I should not allow my relaxing hobbies to my immediate go-to all the time either. Doing that, would allow the progression of CMT to become more of a problem.

Over the years, I have developed a taste for Classical Music. It started in college and grew especially during the time of the Desert Storm in the early 90s. A buddy was in the war and it was stressful. The music created a calmness for me helping to de-stress. As the years went on, up to now, I have loved the music and began collecting it on CD. As the collection grew, I determined that while the music is great, I know nothing about it. This began a journey of exploring, reading, and listening.

Since i had a new personal computer, which were fairly new things back in the day, I began creating lists of the classical music I had in my collection. These lists served as resources for me to know what classical music I have in my collection, information about the composers who wrote the music, information about the artists who performed and created recordings of the music, and just about anything else I could think of that I wanted to know about my collection of Classical C.D.’S. This was quite the hobby and project until it got difficult to buy new recordings in my area. Since my collection was extensive, I had to compare the works on C.D.’s with lists to be sure I wasn’t duplicating. Ordering C.D.’s through the mail or online (at the time) was a challenge too. I still love the music and do some cataloging.

I will share about two more hobbies which has turned into one of my favorites in my next post.

What are the hobby(ies) you enjoy? Please comment below.

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!

COVID-19 and Me!

“A Man Swimming”
Photo by TALAVIYA RAHUL on Unsplash

I found COVID-19 to be annoying but really didn’t affect me too much. I work from a studio in my home. Other than my Deep Water Aerobics Class and walking my dog, I usually do not see very many people during the week.

Unfortunately, not being able to attend Deep Water Aerobics classes since March 2020 has caused some of the Charcot-Marie-Tooth (CMT) pain to return which I had worked very hard for nearly 14 years to stop or subside.

I didn’t realize at the time of participating in Deep Water Aerobics (DWA) that the routines created by the instructors were helping me with more areas of CMT than just mobility. Some of these include anxiety, nerve disorders, coordination, balance, and flexibility. Often, I find myself getting stressed or nerves begin acting up for no real reason so I believe DWA along with my Service Dog helps me with that.

Though the pools have re-opened somewhat at the Aquatic Center where I participate in DWA classes, I have concerns that lack of strong leadership by politicians will keep the place open. Also, they have not started the DWA classes yet. Since it was a well-attended class before COVID-19 lockdowns, I have to really wonder why it’s not begun yet. Oh well, I digress.

For many years now, I have assumed the responsibility of taking care of myself since CMT is not curable and is a progressive disease. I worked to be sure that I have the insurance and funds to cover expenses for treatments I might need. However, when COVID hit, it left me with finding ways to get care.

About a month or so ago, I learned that a friend at church has a pool in his backyard. He invited me to use it whenever I want. Oh my goodness what a huge blessing. I contacted my Deep Water Aerobics instructor for advice on a routine. I’m sure I will remember a few exercises but it might be easier to have her advice too.

I have started working out in my friends pool. The pool has shallow areas with a deep area in the middle! Perfect! I can do the exercises from my classes and add a few I learned in Aqua Fit which was in shallow water.

I highly recommend checking into a Water Therapy workout such as Deep Water Aerobics or Aquia Fit to help through the challenge issues of CMT’s pain. I have found it to improve quite a few areas of CMT.

As always, remember, speak with your doctor before you start any physical activities or workouts. I am not a doctor and am only sharing what’s worked for me.

Know Charcot-Marie-Tooth. Know Yourself.

“Know Yourself!”
Photo by Julian Wan on Unsplash

Probably the best advice I could give someone is for them to learn about Charcot-Marie-Tooth (CMT) and to learn about themselves. Know yourself! Two very important factors to be successful in caring for yourself.

There are many ways to treat Charcot-Marie-Tooth (CMT) but, only one way to treat you! What do I mean by that? Well, CMT is often different for everyone, even within the same family. My brother often said his pain was worse than mine how he knew that I don’t know. Why he ever thought that I don’t know. I never really shared the pain or problems that I have with CMT because I never really saw a need to do so.

Several of my family members had CMT. However, it was decided in my younger years that I have the most severe case in the family. Ok. That’s fine. I wasn’t sure what the point of that was nor how they really came to the conclusion that I was the most severe. As the years went by, I learned they were right as the doctors stood in front of me using terms like “most severe” and “more severe” when I was contemplating foot surgery for the second or third time. Hey, I gotta be good at something! Right?

As the years progressed from the early days, I had a few opportunities to learn more about the disease. A guy I knew was researching at the National Institutes of Health (NIH) which enabled me the opportunity to go too. I did some research about CMT. I gathered a notebook of information which I still have somewhere in my library. I learned a lot but I focused on the “learning” and didn’t allow myself to get too upset about what it said would happen to me. Today, we have the internet with a few websites like CMTA-USA and the Hereditary Neuropathy Foundation to name a few. A search will bring up others and a wealth of information you may be able to use.

My uncle decided to join some of the clinical trials for medications that could be used to treat Muscular Dystrophy and CMT. While I wasn’t privy to the information about the trials nor the results, it seemed to me that they didn’t benefit him that much. Now, I say that as an opinion and not a comment against clinical trials. I know clinical trials of all sorts must be done to find medications that work. However, I decided that it wasn’t for me. I wasn’t comfortable experimenting with my health and medications. But, that’s me! And, I am still that way.

In my 30’s I got married and we found us a primary care doctor. Before I met her, I hadn’t met any doctors who would really listen to what I had to say. This doctor not only listened to what I had to say, but shared some great ideas which ended up leading to me being healthier and the happiest I have ever been. From this doctor, I learned that there are holistic means and forms of physical therapy which can help before I would begin using medications.

For myself, the information I learned from that doctor has benefitted me for nearly twenty -five years. She opened a whole new world for me which I subsequently explored. Based on what I learned, when a “new” problem starts, I try to use a form of physical therapy first or find a vitamin supplement or herb to help. I wish I could say I have never used medications. However, I have had to take medication for nerve pain as it became too uncomfortable.

While I am not criticizing medications and doctors. They have their place. What I am saying is to understand the disease, which type you have, and the treatments available. Make the decisions best for you.

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!