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.
While we may be social distancing, it doesn’t mean we can’t call those we love and celebrate Easter by phone. Or, maybe send an email to share your love with your friends and family. If you are tech-savvy, you can “Zoom” together for a family gathering.
Today, Christians celebrate Easter as the day Jesus rose from the grave. Those who accept Him and Believe in Him will spend eternity with Him. An incredibly awesome promise.
A great website to learn more about become a Christian is Peace With God!
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.
Ahhhhhh! Spring! I am so happy it is Spring! My winter was nowhere near what was forecasted and saw very few snowstorms. Though last November we had snow but it melted off quickly. It fooled me as I was anticipating it to be the beginning of a very long winter.
We start this spring with a CO-VID-19 pandemic outbreak. Stay safe!
Happy Spring! We will get through this and be on to fun Spring activities soon!
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!
