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.
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.
I think this might be an issue which most people with a disability, mental, or physical disability might go through. Frankly, I find it insulting and annoying! It seems to hurt me more than the pain I go through with Charcot-Marie-Tooth (CMT). And, when I find a friend who does this to me more than a few times, I have to quit hanging out with them because they are not a friend… in my book that is! The friend becomes an obstacle to what I am trying to accomplish!
What am I talking about? While I know CMT prevents me from participating in some of life’s events and adventures, a major pet peeve of mine is when someone decides for me, without asking me, that I cannot do something! So they don’t invite me. Or, they don’t ask me. Before I forget, my wife is excluded from these comments. She knows and can or has made decisions and I’m fine with that. She tends to tell people to ask me!
Several years ago, maybe even a few decades ago, after working through the diagnosis of CMT, I decided to keep a positive outlook in life, find the “good in life” every day, always finding the positive in new pain or health issues, and to do my absolute best in things so maybe I could prolong the onset of more problems. I have to admit, sometimes because of the person’s relationship to me, I will push myself to do or participate in something which can, and often does cause me quite a bit of pain. It’s because I want to do it with them or hang out with them or it means more to me to do this than to avoid suffering the pain. I remember one time I did something for someone and suffered pain and exhaustion the next day. However, I was very happy and pleased to have participated in the event.
Several months ago, a man had to orchestrate the funeral for another man. Out of respect, and in my heart, I wanted to participate in it because I thought so highly of the man. Well, I wasn’t asked. Later, I found out that it was because he knew it would be too much for me- you know, the pain. That hurt. And, that’s the pet peeve that I despise the most. I think it took me several months to get
Ask me. Do not assume. Do not make decisions for disabled people unless you truly absolutely know the answer and know you will not offend them by making the decision. Or, they have given you permission to do that.
Just a reminder so you don’t do like I did in college and arrive late to church! It was so embarrassing to have people leaving the church as I was arriving!
Set the clocks one hour ahead before bed on Saturday night!
Thus the journey begins as we head to spring followed by summer! I always look forward to this time of year as we leave the cold weather behind! Here in Virginia, we could have snow up until late March and even early April. If it accumulates, it will melt fast. A great thing!
When I was younger, Valentine’s Day sometimes was a lonely day. Sometimes, I would be dating a girl and we’d go out or do something. But, many times not.
I wish that I had realized back then what I know now or learned along the way. Valentine’s Day isn’t just about being loved or loving your girl or boyfriend. It’s a day to celebrate love.
The greatest truth I learned along the way is that God loves me no matter what. He is always there for me and will ALWAYS love me… even when I mess up really bad.
Thankfully, I will spend today with my wife and two boys. We believe in saying “I love you!” quite often and doing special things for each other all the time. Today will be pretty much a normal day but we will stress our love with a nice dinner somewhere.
I will thank God for the love of my family and friends today too.
I hope and pray that you have an awesomely blessed day!
Wow! Times flies. Faster than we realize. And, especially when you are really busy. Sorry I haven’t written in quite a while. This will be changing soon.
Since last August, life for me has been busier than usual. My wife, my Service Dog Noah and I traveled quite a bit this past summer-fall season. We like to travel and since CMT might make travel impossible in the future, we are trying to get through our bucket list. However, it wasn’t until near the end of my travels that I got incredibly busy.
A new store near my house, “Wild Birds Unlimited,” opened in late August. Well, I couldn’t resist applying for a job and working there. I have used their products and absolutely love them! I was working to learn more about feeding birds, teach others about feeding birds, and for the employee discount.
Around 10 years ago, a Wild Birds Unlimited store opened near my old house. That was where I got hooked. My first really nice bird feeders, birdhouses, and birdseed, which did not go to waste, like some products, nor end up on the ground causing weeds to grow, came from Wild Birds Unlimited.
I got the job and was very excited, to say the least. Though I worked only 8-12 hours a week, it took quite a bit of time away from my writing and photography. Also, Noah was beginning to be unhappy with my time away from the house without him going with me. I could have taken him with me, and I found I should have, but I was trying to adjust to a new schedule and job first.
How does a man with CMT work in a retail store? I took the job because it would be healthy for me to get out and do something a few hours a week. And, because I have been feeling much better lately than I ever have. Also, I have been able to walk Noah for up to 3.5 miles with minimal pain. I was anticipating being able to sit down for a few minutes here and there when customers were not in the store.
What I did not anticipate was how much my feet hurt at the end of every single shift. I would come home, take my braces off, and try to get the soreness to stop before bedtime. However, it often kept me up late.
I tried to manage the pain by taking a regular dose of 2 pills of Ibuprofin in the morning followed by the same dose four hours later in the afternoon. It wasn’t enough to completely stop the pain, but it dulled it a bit. I upped the dose to the maximum allowed and it still wasn’t enough.
I decided to live with the pain and try to make adjustments at the store by sitting down for a few minutes once an hour. The store owner knew I have CMT when I was hired so he understood when I needed to sit down. I made sure he knew about my limitations so it could not come back to haunt me.
However, I wasn’t too surprised to learn that I do not like retail. I thought that because I LOVE the products, I would enjoy it. For me, nope! Though my boss said I did a good job of assisting customers with products. However, I got too nervous when customers came into the store. Also, too nervous checking the customer out at the cash register. It wasn’t a good fit so I quit.
I have been busy since November attempting to get caught up on stuff I got behind in as well as promoting my photography and writing business.
On my last day at the store, I learned that my church really needed my skills in writing, communication, and photography so it looks like I will not have much time to be bored!
Are you ready to start another New Year? I am yet I am not. I know what can I say?!
I am because it means that the cold months of January, February and March are here and I can get quite a bit of writing, photography, and website work done before I start spending most of my days outside.
And, no, because it means I am getting another year older and life is flying by really fast. I am thankful to be getting older as I am thankful for every breath and step I take.
I am starting 2020 with some new pain in my feet. I have an appointment with a foot specialist, the lady who makes my braces, to determine what’s going on and take action.
Despite the pain and it’s health issues, my goal is to maintain a positive and happy attitude throughout the new year.
My prayer for you is to have a blessed New Year and New Decade. My God help you throughout any painful health struggles you may have!
I will be spending New Year’s Eve quietly at home watching a little TV and reading my Trains magazines. I know, I live such an exciting life- heart be still!
