COVID-19 – Isaiah Jacobs

Charcot-Marie-Tooth, COVID-19, and Frustrations

“Coronavirus!”
Photo by Glen Carrie on Unsplash

Well, if I were a betting man, I would be richer today than I was a year ago. Why do I say all that? Somehow, I knew COVID-19 was going to be an issue with its lockdown nonsense at least into the election season. Most people seriously doubted me. As more stringent lockdowns began in some parts of the country, my frustrations continue as the “lockdowns” have harmed more people than we really know.

While I understand the need to be careful because of a virus. I’m not seeing where any pre-cautions are any different than those I was taught as a very young boy probably soon after birth! My mother taught me not to put my hands in or on my mouth, do not pick my nose but use a tissue, do not cough into my right hand since you might shake someone’s hand, wash your hands frequently and often (I know, right?!), stay away from people who are coughing or have a cold. Common sense health care, right? Right.

My first and foremost frustration is how diligently I worked for many years, probably close to twenty, to help me feel better and stay ahead of Charcot-Marie-Tooth (CMT). It’s been proven that if you stay active, you can slow the effects of CMT, though not truly stop it or cure you. I have been careful not to be lazy or take the easy way out with many aspects of life so I would stay active. When the governor of Virginia closed everything in the wake of COVID-19, it really upset me because he was messing with my health- along with many others.

Back in 2006, while in physical therapy sessions I learned quite a few exercises to help me with some pain. At the same time, I had started taking Deep Water Aerobics (DWA) classes. It wasn’t long before I connected the exercises in the physical therapy to the exercises in DWA and realized it could be very beneficial to continue taking the DWA classes. After that, I made sure not to miss any classes as it was more fun than going to physical therapy. In the time prior to the COVID shutdowns of March 2020, I never missed more than a few classes at a time. Now, it’s been about a year.

Thankfully, during the summer of 2020, I was able to use a friend’s pool to workout. Thanks to my brilliant Deep Water Aerobics Instructors who provided excellent instruction prior to COVID and provided me an instruction list to a workout routine. Also, I took up riding my bicycle every day along with walking my dog. This routine helped me through to the fall season when it finally got to cold to swim or ride my bike.

Since it doesn’t seem like my DWA classes at the local fitness center will ever start up again, I inquired about personal training sessions. However, the classes would be very expensive, possibly unreliable with the whims of the politicians these days, and there would be no use of the locker room to change. Not good. I could change in the hallway bathroom but I am not too interested in sharing my naked self with the world as I just knew the door would open at an inopportune time. The other choice was to go home in a wet bathing suit. For me, CMT affects my nerves which happens to NOT mix well with cold water and winter weather. A recipe for nerve issues and becoming ill. So it didn’t work out.

Fortunately for me, I have learned to pay quite a bit of attention to my body and what I do to make it feel better or worse. I learned that continuing to have my massage therapy and chiropractor sessions, but spaced at least a week apart, and scheduling every three weeks would mean minimal discomfort.

The blessing in all of this frustration is coming, I believe. My massage therapist is always on the lookout or learning new ways to help people feel better. Not too long after my frustrations of no Deep Water Workouts began, she introduced me to a new type of therapy called “Bemer.” Since it is what I call holistic, meaning no medications involved, I was willing to try it.

My journey into using the Bemer product to help me feel better with guidance from my massage therapist has begun. I will share updates as I can.

Please remember, my experiences are my own and cannot be guaranteed to provide you with the same results. CMT affects each person differently. Discuss any exercise routines or products with your doctor.

What…Cancel Christmas???

“Glory to God in the Highest … the Nativity”
Photo by David Beale on Unsplash

Christmas is such an amazing time of year, a time when people smile at each other no matter how long the line is to make their purchase. A time when people look for the perfect tree or the perfect gift. A time when delicious smells waft through kitchens all around the world.

Now I hear that Christmas might be canceled. I find that hard to believe. However, with our government closing stores, restaurants, not allowing large gatherings for birthday parties, funerals, etc., Christmas most certainly seems like it will be next.

We look forward to hearing that one special song that, for each one of us, says…”Christ is coming.” Christmas carolers, Christmas pies, Christmas stockings, and Christmas lights, will this be the year they disappear?

Trees, wreaths, cookies, stars, presents, what says Christmas to you? When you see a bright star in the sky does that make you think of our Savior’s birth? Do you ever tire of hearing the story of Jesus’ birth with Mary and Joseph, the shepherds, and the Maji?

Shepherds, now there was a motley crew. Working with sheep is a smelly dirty job. And dressing for work would not have to do with putting on your best duds. Then one night as the shepherds bedded down the sheep and were sitting around a fire, something amazing happened. An angel appeared and the previously dark sky was alive with light. They cowered in fear, but then the angel said, “fear not” and the fear left them and they became still and listened. And what a story the angel would tell these shepherds, not the people in town, not the merchants, not even the rabbi, God chose shepherds to hear the glorious message of the Birth of His Son. How appropriate as His Son would come to be known as the Great Shepherd.

Cancel Christmas…I don’t think so, for the spirit of Christmas lives in you.

Let’s share the joy, the hope, and the love of Christmas with everyone we meet.

To learn about Jesus Birth and the Christian life, please visit Peace With God.

About the author: Kim Kirby is a writer and lives in Virginia. Her writing reflects her belief and faith in Jesus. She enjoys spending time in the outdoors, especially the mountains.

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!“

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.

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.