Category: Hands

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.

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.

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.

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.