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!
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.
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.
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:
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.
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.
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.
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.
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!
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.
