Tag: Arizona Braces

Charcot-Marie-Tooth: Journey to New Arizona Braces, Part 4

Photo by ThisIsEngineering

Over the past few years, I have been writing about my journey to wearing braces and the transition to using the Arizona Brace design, which has improved mobility and quality of life quite a bit. You can begin reading the previous posts at Charcot-Marie-Tooth: My Journey to Using Arizona Braces. Why has this topic come up again? I need new braces again and will need them constantly for the rest of my life.

The spring season of 2024 began in all its excellent glory. All the plants were blooming; the Hummingbirds came back again, the Tree Swallows, Black-Capped Chickadees, Eastern Bluebirds, Cardinals, and Carolina Wrens were all swarming my yard with nearly crazy abandon searching and fighting for that perfect nesting spot. I was extremely happy to watch this unfold as this is what I enjoy most about the warm season, and even that of life, nature’s beauty, coming alive for another season. I watch from the sidelines far enough away so I do not disturb yet get my heart’s fill. Sometimes, I can sneak a photo or two of these beautiful birds.

The glorious return of nature meant more time enjoying walks with my half-crazy black labrador retriever. She has more spring to her step and more curiosity as she sniffs out the treks of the wildlife coming through. The funniest, or maybe cutest, part of all this is when she finds a bug or a frog that hops, she hops too.

I looked forward to purchasing annuals, perennials, and some trees before the season gets too far along and the Virginia heat settles in. However, I first needed to clean my gardens from the debris from the previous year. This chore was made easier this year with the installation of a new roof. As they laid tarps down to catch their debris, their removal helped the garden debris go quicker. 

As the season went on, I found myself nearly every waking moment, except days at the gym, planting perennials and annuals in my garden. I just could not get enough of it. Once the flowers were planted, I came to a stopping point where I would begin spreading 150 bags of mulch. It is a chore I enjoy yearly, as the end design looks excellent.

This year, as I was spreading bag no. 89, I realized some pain was starting in my left leg. At first, I don’t pay much attention to it. I am constantly having some pain somewhere in my body, so unless it is super painful or in an unusual or new spot, I don’t pay it much attention. That would be par for the course for me. It is not necessarily a good idea, so I don’t recommend Charcot-Marie-Tooth (CMT) patients doing this.

Unfortunately, this pain wasn’t giving up but increasing. When I walked my dog, I noticed it hurt more than usual. I thought that I might need a new set of Arizona braces. It seems that I need a new pair every few years. However, this time, three years have passed. Since it is summer, the warm season I dearly love, I didn’t want to take a few days to go to the doctor.

A little trick I have learned when wearing braces is to determine precisely where the pain is coming from in my feet. When I take the braces off, I immediately begin feeling my foot to determine the location of the pain. Oddly enough, sometimes, I can be in terrible pain, take the braces off, and still not find where the pain is. To my touch, it doesn’t react, nor does it react to my wife’s touch.

If I am not able to locate the spot where the pain originated, I will place a mole foam bandage in the general area where I think the pain originated. Surprisingly, this trick usually calms the pain down, and I can continue doing whatever I want to do.

About mid-summer, I decided to meet with my Orthopedic Surgeon and Brace Doctor to get a new pair of Arizona Braces. Over the years, I’ve developed a great relationship with them, so my stress levels and concerns about the appointment were less than usual. However, I have to admit that I had a few concerns about being able to make my feet and legs relax so I could get a better fit with the new braces.

When we arrived at the doctor’s office, I was treated like an old friend getting my yearly check-up. The doctor has a great sense of humor that makes the appointments fun and less stressful. He put me through the usual examination of looking at my feet, followed by a series of X-rays.

As the doctor examined me, we talked about the foot and toe surgery that could be done to straighten the arches and my hammer toes. The surgery is done on one foot, followed by 6-months of therapy. I’m unsure if the toes are done simultaneously with the foot. Once you are able, the surgery is done on the other foot and again, followed by 6 -months of therapy. The doctor indicated that with my positive attitude, he doubts I would need 6 months for either foot. I still do not opt for the surgery because I am walking and not interested until I am not.

The x-rays were a bit challenging because they wouldn’t allow my wife to take me in and bring me back. That made me a bit concerned or uncomfortable, as she tends to help me relax just by being there. However, the man assisting me did a great job, and the X-rays were done. Once the X-ray technician completed the tasks, they were uploaded so my doctor could examine them to make recommendations for me. As he read the x-rays and compared them to the 2021 exams, I heard him say, “Minimal progression in the feet.” My wife heard it, too. I was elated and nearly jumped up and down, hollering “yahoo,” but that could have damaged my ankles or feet. Either way, I was so happy to hear the news.

I was a bit surprised because it seems that CMT has progressed quite a bit this year. I’ve had more challenges walking, being tired, and so on. However, maybe it was something else. Also, I may have been able to slow the disease by diligently working out at the Wellness Center. After all, most of my exercises have focused on keeping my feet straight and firmly on the ground. Anything is possible.

And it could be God saying, “See, I’m still here!”

My brace specialist did her usual routine of wrapping my feet up and using plaster to form a cast on my lower legs, ankles, and feet. This time, she moved my feet in an attempt to straighten them, which should provide better balance for me. Knowing this was done, I was a bit concerned about the pain I would probably endure when breaking in the new braces.

The braces were ready for me to pick up a few weeks later. Concern and excitement were the emotions of the day. I was excited because the new braces could improve my quality of life and make walking more comfortable and easier.

As the doctor put my new braces on, she shared with me how to wear them—gradually breaking them in by wearing them only a few hours a day for the first week. My wife takes note of the instructions as she knows my concern about pain. When the specialist finishes lacing them up, she gives me the usual instructions of being careful and not running down the hall. I pay attention to her and take it easy as I’m unsure how much the adjustment this time will affect me.

At first, there was the severest pain in my left foot. We readjusted my foot in the brace as it wasn’t situated correctly. I walked down the hall again, feeling good. Surprisingly, it was the “straightest” walking I’ve done in my life. In many ways, I was very excited about wearing them as it meant I was beating CMT. On the other hand, the last time an adjustment was made for new braces, it was a painful experience. That, I am not looking forward to going through.

It is now three months later, I have had some pain during the break-in period. However, no where near what I was expecting. This time, the pain was in the leg muscles that seemed to be working harder than before. Also, a few challenges in my feet made life a bit uncomfortable for awhile. However, it was a reminder of God saying to me, “I am still here!”

Charcot-Marie-Tooth: My Journey to Using Arizona Braces: My Current Pair, Part 3

Photo by Glenn Carstens-Peters on Unsplash

Disclaimer: I have no affiliation with brands mentioned in the post. Nor, have I been paid,  received compensation, or any free products. I am sharing this for educational purposes only. Nor is this an endorsement of stated products.

A few years ago, I started a series of posts to share about my experiences with braces. Here is a link to the first post, Charcot-Marie-Tooth: My Journey to Using Arizona Braces. With a busier than planned schedule, I didn’t continue the series until recently. Here is part 2 at Charcot-Marie-Tooth: My Journey to Using Arizona Braces, Part Two. You will want to read the posts in the order posted. 

I wore the Asolo hiking boots for quite a while. When a pair wore out, they were immediately replaced. However, the product’s sturdiness, despite the deformities in my feet, lasted longer than other products. These boots supported my ankles and feet as they were designed for the rough hiking terrains. As I retired, I no longer needed to worry about keeping them perfectly spiffy for the office. Also, I wore Crocs to church on Sunday mornings since I would not be walking very much. It gave the feet and legs a break.

However, after a while, the pain in my legs and feet after spending nearly the entire day working in my garden, doing other chores around the house, and walking my dog between two-three ½ miles became quite unbearable. I tried to get myself to relax by taking off my shoes and socks, letting them rest, and staying off of them. Eventually, the pain would settle down. However, going to bed was a different story entirely. Since I sleep on my back, the calves of my legs would scream in aching, painful discomfort. I had to get comfortable, so I would roll to one side or the other, trying to do so. However, sleeping on my side isn’t a favorite for me. Once the discomfort settled, I could lay on my back again.

As the challenges grew more painful, I decided that I had to do something. Since it had been years since I had braces and worked with a brace doctor, I did an internet search to find someone to help. Also, I absolutely did not want the plastic braces that uncomfortably gripped my legs. It was an easy search to find an Orthopedic Center near me. I discussed visiting their office with my primary care doctor, who gave them the highest praise. That gave me the confidence I needed to check them at least out.

Before the appointment, I gave considerable thought to having surgery to straighten my feet. I prayed about it, as this was a serious move for me. I read articles about the procedures, which indicated that they had been improved with patients having better outcomes. So, I made an appointment with the doctor.

Upon arriving at my appointment, I was surprised by the doctor’s calm, gentle, and humorous demeanor. This made me relax quite a bit. I felt like he was genuinely interested in me and my health. As we discussed the surgery, after a few tests about ability and x-rays, he shared with me that after surgery, I would need to have six months of physical therapy to get the foot stronger. Also, getting used to walking with a somewhat normal foot would be a challenge since I cannot remember ever having one to start with. It would be time to do the same procedure on the other foot when it was strong enough. However, since I am still walking, I decided that I would wait on the surgery until I am unable to walk if that happens. Also, I had not gotten a clear answer to my prayers to go forward with it.

After some discussion about the uncomfortableness of the plastic braces and my interest in something to support my ankles but not too far up the legs, the specialist decided an Arizona Brace would be my best solution. Why? I didn’t want anything like the plastic ones I had before. They were too uncomfortable and clunky. Also, these looked to give me the support and comfort I needed.

After I finished with the doctor, I met with a Physical Therapist who discussed the concept of the Arizona Brace. One issue for me was that there would be no hinge at the ankle, which I thought would make mobility more challenging. My mother had braces with no hinge, which made walking more challenging. Since I am determined to keep going, I discussed this issue with her. She answered all my questions, confirming my doubts would be worked out.

At this point, the physical therapist took me to a laboratory in the office. She molded my legs from just above the ankles to the feet, much like a cast. Also, I got to pick the color I wanted on the outside of the brace. Since I like a colorful life, I chose blue, not skin color. I would pick them up within a few weeks.

The weeks passed by quickly, and I was at the doctor’s office picking up my new Arizona Braces! I was happy as I saw them as opening the door to remain as active as I wanted to be and possibly even more so. When I arrived, I was taken to the Physical Therapist’s office and shown how to put them on, lace them up, and tie them. She clearly told me, “Be careful when you stand up. Once you get used to standing, you can try walking down the hallway. However, BE CAREFUL! Go slow. This is not a race!” Of course, I, unintentionally got up to walk and went quickly down the hall like it was a race. The Physical Therapist had a hard time keeping up with me. She said, “SLOW DOWN! BE CAREFUL! SLOW DOWN!” So, I was off and running, so to speak.

I have to admit, I was surprised at how comfortable the new braces felt against my legs and feet. Of course, there was some time to get used to wearing them, much like when you buy a new pair of shoes. These braces required that I wear them for a few hours a day gradually building up to a full day. I learned to walk again. I learned how to walk my dog again. The list could go on and on.

I think the most challenging part of all of this was not to get discouraged or frustrated. After all, most guys put on a pair of socks and their shoes, then go about their day. I put socks on, put the braces on, and tie the braces tight, followed by my shoes. The shoes were a new brand to me, Hoka One Ones. They were, and still are, the most comfortable shoes I have ever worn. Also, I think God gave me a gift that day as the shoes were very colorfully designed, which cheered me up.

To this day, I wear my Arizona Braces every time I walk more than a half-mile. I wear a pair of Hokas when I am not walking a long distance, such as from the house to the car, from the car to the church, or to the restaurant. The braces have given me more strength and ability as they support the weakness in my ankles and feet. Much like God promised me years ago, He would be my strength and ability.