Charcot-Marie-Tooth – Page 8

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

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!

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.

Charcot-Marie-Tooth: Sciatica, A Huge Pain In My …. well, Right Leg!

“Chiropractic Examination Room”
Photo by Stuart Poulton on Unsplash

About four months ago, I started having some very sharp pain in my right glute muscle which went down my to my toes. I could actually feel the nerves going crazy throughout my foot and into the toes. This was really weird because it’s been a long time since I have felt much of anything in either leg or foot. The pain was the worst I have ever had.

For me, medications are not where I normally want to start to care for pain. I do not like the possibility of addiction nor the idea of adding another pill to the stash of vitamins, supplements, and medications I already have to take. However, in this case, the pain was so severe it limited my ability to do much at all. So, I began a mild regiment of an over-the-counter product for some relief. If you know me, I started with a low dose. When it didn’t work, I increased it. Finally, some relief.

Knowing I cannot live with this pain, I needed to determine the cause and develop an exercise or a physical therapy routine to stop it. The sooner the better!

I am blessed to have a chiropractor who knows quite a bit about Charcot-Marie-Tooth (CMT) and has been giving me adjustments over the years for may of my whacked-out issues. With his help over the years, I have been able to walk, move, and feel better. So he will be my first choice to helping get rid of pain.

I scheduled the appointment with the Chiropractor and was not a bit surprised, to his credit, that he already knew what wrong and began a series of adjustments. The series of adjustments would be based on how my body reacts to his work. As it turns out, I had more than a few months of appointments every two weeks. BUT, oh my goodness, and thank you God, the pain subsided enough to provide relief.

My job would be to pay attention to what I do every day and try to determine the cause and avoid it or make appropriate adjustments in my studio or home as needed. I should know as whatever it was should cause some spike in pain. It did not take me long to determine it was caused by my posture while sitting in my old desk chair and the way I move to pull myself out of bed. As it would be, the issue was partly caused when I would use my leg to pull my body up and out of bed. Needless to say, that stopped.

I continue to see the Chiropractor. He has recommended a few herbs and holistic means for helping with the pain. I have not tried these yet since the pain is gone. However, I plan to look into them when the fall and winter weather returns.

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.