CMT – Page 2 – Isaiah Jacobs

Charcot-Marie-Tooth: Belated Merry Christmas and Happy New Year

“A Christmas Tree Lights the Night”
(C) Photo by Tim Mossholder

As it seems to be the usual routine for me when the year is coming to an end, the last three months of 2023 were unbelievably busy. I don’t know how I ever worked in an office and got anything done, as I wouldn’t have had time these last few months.

I hope you had a very Merry Christmas and a very Happy New Year. Mine were nice and quiet- my favorite way to spend a day. The holiday season started with a Thanksgiving dinner at the Skyland Restaurant in the Shenandoah National Park. We were joined by my best friend Ed, whom I met in my college years. My wife, a family friend who didn’t make it this year, and I will probably make this our traditional Thanksgiving dinner. It would be awesome if Ed got to join us, too. After we ate, we drove the Skyline Drive from the restaurant to the Harrisonburg area and returned home. The solace of nature is a blessing even in the winter months.

Ed came to visit the week before Thanksgiving. We spent the week roaming Skyline Drive and a bit of the Blue Ridge Parkway. We’d pull off at various overlooks to enjoy the view. While driving, we chatted about our college days and wondered about whatever happened to this or that person. Ed is the type of friend everyone with Charcot-Marie-Tooth (CMT), or any other disability for that matter, wants. He doesn’t let my disability prevent us from doing stuff and having fun. On numerous occasions, he would give me a helping hand as he knew the terrain coming up was a bit challenging. Also, when CMT frustrates me with its new antics, I can chat with him as much as I need. He’s a very good listener and has often provided God’s Words of Wisdom just as I needed it without being preachy.

Christmas was a little different this year. My wife and I bought a new Christmas tree and ornaments. The one we have is buried somewhere in the garage, along with ornaments and decorations that are older than civilization itself. I enjoy decorating for the season, however, I do not relish the idea of putting an artificial tree together followed by stringing lights around making it look balanced and nice. Oh, and beautiful, too. I will never be like a buddy of mine who has an enormous tree and thousands of decorations. Though it looks great, it’s too much. My wife and I exchanged gifts the old-fashioned way this year. They were wrapped, placed under the tree, and opened in a celebratory fashion on Christmas. It was a nice way to celebrate the Birth of Jesus.

We are still working on the new tradition as our last living family member went on to heaven, so it’s now the two of us. We invited a friend to join us and went to Founding Farmer’s restaurant in Northern Virginia for our Christmas dinner. Our friend was great company and helped make the celebration more fun. I got to sit in the backseat of our car while my wife drove and our friend rode shotgun. Worked great for me as I enjoyed looking out the window and thanking God when we left suburbia and returned to the country!

A few days after New Year’s, I got to spend a few hours with a young man I call my grandson; more about that in a later post. We had breakfast at a local Chick-fil-A and talked for a few hours. He is one of those guys who is very popular, has a large family, and always has something to do somewhere with someone at any given time of any day of the entire calendar year. So, I cherish the few hours he can squeeze in to spend with me. It’s been an amazing journey to watch what started out as a “joke” or having fun with the age difference between us to become great friends, something God has definitely been in the middle of pulling together.

Every year, I think that I will spend the holiday season differently by celebrating the birth of Jesus by attending various church events, going for a drive to enjoy Christmas lights, or doing something special that makes the season fun. No sooner have I thought it and the season is gone… again.

I hope yours was fun. Here’s to a great 2024!

Happy Thanksgiving!

Every November, I seem to subconsciously begin thinking about what I am thankful for and why. I guess the leaves falling and the colors changing with the cooler weather spur my thoughts toward being thankful. This year is no exception, especially since 2023 has been a bit of a rough and challenging year.

The year has been a bit rough, with some physical challenges along the way. I am planning to write separate posts about this, so I won’t go into too much detail now. However, I will say that it seems to me that I needed to go through those rough challenges to get to the point where I am now, which is feeling better than I ever have. For that, I am very thankful.

At the beginning of November, an announcer on the local Christian radio station, WPER 89.9 FM suggested writing down one thing you are thankful for every day in November. It doesn’t have to be detailed or something big, just write something down. Though I didn’t make a list on paper, it reminded me to think about it every day. And, why not continue writing down what you are thankful for every day whether it’s November or Thanksgiving or not?

This year, my Thanksgiving celebration will be our 2nd Annual in a new tradition that started last year after our last family member passed away. We’ll head to the Shenandoah National Park’s Skyland Restaurant for our meal. This year, we will be blessed to have two friends join us. One of them came with us last year and we hope to make this a “family” tradition for the three of us. The other friend, who I hope will join us again, is my best friend who was my roommate during college. We’ve had a great week together exploring the area and will celebrate Thanksgiving too.

However you celebrate the day, I pray you have a blessed one.

Honoring Our Veterans!

I think the hardest posts for me to write every year are the ones that are intended to honor our veterans (Veterans Day) or to remember them (Memorial Day). Why? The words, “Thank you!” “Honor!” “Remember!” and the like. are all great words but they seem to not completely express the gratitude I have for the many men, women, and even, dogs, who have put their lives into protecting our freedoms in more ways than I know.

Since I have Charcot-Marie-Tooth (CMT), even before it was officially diagnosed, my physical body would never met the requirements of the military for enlisted men.

To everyone who has served in our Armed Forces, thank you for everything you have done.

Daylight Saving Time Ends, Sunday, November 5, 2023, 2 a.m.

I don’t know about you, but I have no interest in getting up at 2 a.m. to do anything, much less, change my clocks back by an hour. I will start changing the clocks that I don’t use on a regular basis throughout the day today. I started this morning after I got up by changing the bedroom alarm clock. By day’s end, all the clocks are changed.

In some ways, I am anxious for the fall weather to finally set in. I began working out at a Wellness Center this year, more on that in another post, and I’ve noticed that I am feeling much better than I was. I’m interested in finding out how much the workouts have helped the neurological aspects of Charcot-Marie-Tooth (CMT) that cause me not to enjoy the cold weather. Of course, there are other things that may lead to a lack of enjoyment. I’ll figure it out.

Charcot-Marie-Tooth: Railroad Safety Week, September 18-24, 2023

CSX Railroad in Ashland, VA
(C) 2023, Jack Bruce, Jr.

If you have read a few of my posts, you know I enjoy parking my car trackside to watch trains go by. I will take my tablet with railroad magazines and several books on it, my camera and video camera, and, most importantly, my dog, park my car safely by railroad tracks, and wait for the train to come. This hobby is pretty popular and is called railfanning. Someone who participates in it is referred to as a railfan.

Occasionally, I see other guys doing the same thing, especially on weekends, but without a dog. Mine goes with me for many reasons that will be shared later in another post. For general information, I wouldn’t enjoy my outings as much without her. And, trust me, she is securely harnessed in the backseat with windows rolled up enough to prevent her from getting out but still has fresh air.

As with many things in the life of a Charcot-Marie-Tooth (CMT) patient, railfanning is not something we can do without planning. It is a fun and fascinating hobby, but it can turn dangerous faster than you would think. Did you know that a train in the United States hits a person or a vehicle every three hours? That it takes a train approximately one mile to stop?

First and foremost, all railroad tracks, including approximately thirty feet on each side, railyards, bridges, and tunnels are railroad property. Therefore, they are no-trespassing areas to avoid. The railroad companies employ their own police and other security measures to help maintain safety on their property. Whenever someone cannot obey the no trespassing guidelines, it can lead to stricter measures, which may cause others not to be permitted to railfan.

I always park my car at least 30 feet from the railroad tracks and ballast. I am uncomfortable parking as close to the tracks as possible. I do this to keep myself and my dog safe. I saw a YouTube video recently where a train was traveling at a good speed with a piece of metal hanging off the side of a freight car. Apparently, the engineer nor the conductor knew it was happening. If someone were parked or standing close to the tracks, they would have been hit. Also, as CMT patients our mobility is somewhat challenged. For me, I can’t always turn and run. Obviously, I would just risk turning my ankle in a situation like this. However, staying away from the tracks, to begin with, is best.

Regarding mobility, it takes me a few seconds more than the average Joe to move my legs and get out of the way, as I stated earlier. Trains move faster than they appear. They can come upon you before you know it. Also, the locomotives are much quieter than they used to be. I was watching trains in my usual spot when a train snuck up from behind. I was surprised but was safe as I was sitting in my car. As a kid, I remember the locomotives being so loud you knew when one was coming from a distance away. Nowadays, nope, you’re not likely to hear it until it’s upon you.

Another concern with mobility is the ballast used around railroad tracks. Ballast are large rock. These are very challenging to walk on. I’m guessing they are a bit challenging for those who do not have deformities in their feet, too. I stay away from ballast because it can cause me to fall. If I fell on ballast, it could mean I’d seriously or severely hurt my knees.

Crossing the railroad tracks has always been a challenge for me as far back as I can remember. Before I cross, I look both ways to ensure no trains are coming. I never ever cross the tracks when a train is coming. Since my feet will stumble, or even drop, and catch on anything and everything, I could easily trip on plenty of things such as the rails, spikes, ballast, and the list could go on. Heaven forbid I fall when a train is coming. I might not be able to get up fast enough. If I need to cross the tracks, the safest place is at a crossing.

If there are two railroad lines, I never ever go to the middle area and wait. Why not? My type of CMT has a severe nerve component. I would not want to be in the middle of two passing trains because it could set off my nerves, causing me to feel really bad. Or even fall down. Not to mention, any debris from either train could be a problem.

Also, never try to beat a train. Or play “chicken” on the tracks. You won’t win. One morning, I was watching my Railstream camera, focusing on a busy line in Indiana. As the train came rolling up the tracks towards a crossing, a man decided to run across. The phrase “missed it by that much” comes to mind as the man nearly made it. Instead of waiting a few minutes for the train to pass, he had to be taken to the local hospital. Don’t try to beat a train. It isn’t worth it. Wait for it to go through, and then head wherever.

Railroad tracks are meant for trains and track maintenance equipment. Do not jog, walk, or run on them or beside them. Keep yourself safe by doing those activities in areas designed for it.

One of the most insane actions I’ve seen near railroad tracks is those who stop their car on the tracks, thinking the traffic light will turn before the train comes. Actually, you don’t know that. In many areas, trains move quite fast, and they cannot stop for you while you wait for the light to turn. Also, these people who do this don’t allow a plan of escape should a train come. They can’t go forward or backward, and traffic is coming in the lane headed in the other direction. What I like to do when approaching a railroad crossing is to slow down, being alert as to whether a train is coming so I can stop at the last minute. Also, I notice whether I can get safely across if I have to stop for traffic or a traffic light on the other side. My wife says, “You’re hoping to see a train, aren’t you?” The answer is always “YES!”

If you are into photographing trains, always photograph safely away from the rails. Never pose people or animals on or close to the tracks. This is a very dangerous thing to do because, as I mentioned, the locomotives are quieter these days. As a photographer, I know I adjust my camera settings to create the perfect exposure, which can be a distraction, causing me not to notice a train coming. Also, if someone gets hurt, you can be held liable for any damages that happen.

Railroads, watching trains, photographing, or creating videos of trains is a fun and interesting hobby. I’ve enjoyed sharing my photography and videos on social media for those who cannot get out themselves. Help keep this hobby safe for everyone by learning the laws regarding watching trains and following them at all times.

Do your part, and encourage your friends to do the same, to be safe around railroad tracks. This way, you can be around for a long time to enjoy them.

Charcot-Marie-Tooth: My Journey to Using Arizona Braces, Part Two

“Braces Being Constructed”
Photo by” ThisIsEngineering

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 for educational purposes only. Nor is this an endorsement of stated products.

About two years ago now, I started to write a series of blog posts about my journey to wearing Arizona Braces, my current pair. My apologies, however, life circumstances got in the way of continuing the posts, causing me to forget to continue the series. The circumstances were all good, just was busier than I’d planned. In case you missed it, here is a link to the previous post, My Journey to Using Arizona Braces.

My first pair of braces, made back in 2000, were made of heavy plastic with a hinge at the ankles to allow some movement and velcro straps to keep them tight on my legs. The braces fit into a good brand of walking shoes, such as Rockport, but a size to size and a half larger than I would normally wear. I wore the typical tube or athletic socks that went to my knees. Yup, oh my word, I looked like a geek… more than I ever wanted!

I wore these style braces for several years. I learned that pulling leg warmers over them in the winter helped warm my feet and legs. Yes, my word, another period of geekiness that I’d never share unless it was to benefit someone. Also, I had to have them rebuilt more than a few times because my Deep Water Aerobic classes caused the leg muscles to get bigger. The doctor who created my braces didn’t seem to be on board with the fact that my legs were getting stronger with muscles growing, too. Though the concept and purpose of these braces work for a time.

However, I got to a point when I was tired of the plastic braces bracing my legs so annoyingly every day. To remedy or relieve this, I wouldn’t wear them in the evenings, some Saturdays- depending on activity level, and all day on Sundays. This provided relief from the discomfort of the braces. The discomfort is something that some might call a “necessary evil.” I needed the braces to walk throughout my day, but the evil is when the discomfort sets in. If you think about it, you can work around the discomfort.

To my surprise, the muscles in my legs continued to get bigger as I continued to do my Deep Water Aerobics. Eventually, this led to a third new pair of braces. However, this would be the last, as the doctor wasn’t on board with the replacement of the braces.

After a while, the braces weren’t fitting again, but I had become unhappy with wearing them. After all, they were a pain to put on and, after several hours, a discomfort to wear. It was time for a break. So I did.

What can help a Charcot-Marie-Tooth guy who doesn’t want to stop enjoying life, but definitely needs some assistance? A good, but a bit expensive, pair of sturdy hiking boots. After doing some research and chatting with a few people, like my chiropractor, I found hiking boots offer quite a bit of stability. This became a dream come true! No braces!

My first pair of hiking boots were made by Asolo. Since they did not have the men’s size I needed, I bought the equivalent size of a woman’s. Since you couldn’t really tell the difference in styles between a man’s pair and a woman’s pair, it made no difference. The stability of this brand kept me going for several years, replacing them as they wore out.

To read Part 3, please visit: Journey to Wearing Arizona Braces: My Current Pair.

Happy Birthday to Me!

Yes, earlier this year, I celebrated my 60th birthday, and am so happy to have reached this milestone in my life! I know, you think I am a bit crazy, right? Well, no, not really. I could get all depressed about getting another year older, but that’s a negative way of looking at things, especially the blessings in your life.

God doesn’t promise us another minute or day in this life. Every minute of every day that I live, I am thankful. It’s a gift God has given me. Sometimes, I wish I’d done more in my life, such as working in a management position in my career. Frankly, Charcot-Marie-Tooth (CMT) would have prevented me from being the best I would need to be to work in that type of role. However, I was able to work a career at the highest level that I was comfortable with and have a pension to retire. They say, I could have worked longer and made more money. I say I have had too much fun in retirement with my wife, dog, and cat to trade it for more money.

Another point for me, at 60, I am still walking. Yes, I wear braces for any distance passed a 1/2 mile. Sometimes, when I am walking on unfamiliar surfaces or known challenging terrain, I will use a cane to help with balance. However, I am not confined to a wheelchair as was the original prognosis when I was in my twenties. Sometimes, it is a bit painful to walk, but, the moments of walking with my dog are absolutely priceless, and I wouldn’t give them up for anything.

In a few weeks, my wife and I are taking off on a short trip to celebrate my 60th birthday. We’ll head to the infamous Horseshoe Curve National Historic Landmark, Altoona, PA, as well as some smaller towns, Lilly, Cresson, and the Portage area where I will photograph and video trains. Our meals will be at our favorite places, Texas Roadhouse and Perkins. Since neither are located near us now, we enjoy them when we can. We did this trip a few years ago and enjoyed ourselves.

My wife bought me three bluebird houses that I have had my eyes on for a while. I enjoy watching birds. Now that I own some land, I am converting part of the yard back to nature which will include a bluebird house trail. She knows my love for nature so she wanted to celebrate my 60th in a big way.

Though God told me He would be my strength and ability if I just trusted in Him, I never dreamed that He would make me so happy at sixty years old doing more than I imagined.

So happy birthday to me. I’m happy how God has blessed me to live this long in life.

Charcot-Marie-Tooth: Happy Mother’s Day!

For some reason or another, I am really missing my mother this year. I’m not sure why, as she passed away in 2011. I know we miss our parents after they pass away, but it’s really strong this year.

As a man with Charcot-Marie-Tooth (CMT), I have become very thankful for the mother God gave me. When I was a child growing up, my mother was always loving, caring, and encouraging me.

Encouraging? Yes. She knew that I had CMT and probably had an idea about the struggles I might face in the future, even though there wasn’t much information about it back then. I remember the many times she would encourage me never to give up and to keep going. I sometimes speculate that she saw other family members with the disease who weren’t always very positive and maybe gave up easily, and she didn’t want me to do that. Since my mother is deceased, I cannot verify these thoughts, but she always went the extra mile for her boys.

I heard a comment on the radio this week, “No one loves you like your mother!” So true. That is a special love only given by those who become mothers.

May you have a blessed Mother’s Day with your family and friends. If you are a mother, I hope you feel the love of your children like never before.

Charcot-Marie-Tooth: Baseball Caps

“Man Wearing a Baseball Cap”
Photo by Alano Oliveira on Unsplash

I think baseball caps are one of the greatest inventions! If you have trouble getting comfortable from irritating nerves and keeping warm during cooler or cold weather, you might learn to love baseball caps too.

As you may know, Charcot-Marie-Tooth (CMT), as well as neuropathy and other diseases can make colder weather almost impossible to be comfortable. For me, when I get cold, my nerves begin to go, what I like to call, haywire. It often feels like I am starting to get cold. However, it is a nerve cold feeling rather than actually cold. The problem happens in warm weather too when I have been in air conditioning too long. Or, when I walk down the grocery refrigeration aisle. I have to completely stay away from those huge refrigeration units such as those at Costco. Sitting in front of an air-conditioning vent or wall unit will cause problems too.

Years ago now, I was dealing with my body feeling very uncomfortable all the time in the winter months. From a physical standpoint, there wasn’t much I could do about it as it’s a symptom of CMT. I found that I could wear a lightweight T-shirt and shorts around the house to ease the clothing discomfort but definitely not outside in winter. When I went out, I wore the typical shirt and khakis, but I needed something else.

At first, I tried wearing a knit hat but it turned to be itchy and hot. Too much for my comfort. Also, it felt odd wearing a knit hat indoors. And, hat head was horrible, especially since I tend to allow my hair to grow long in the colder months. It would stick straight up, which was embarrassing in those moments when I would want to take it off inside a building.

Not long after, I began wearing baseball caps. I quickly learned that the baseball cap kept my head warm, kept cool breezes off my head, and settled my nerves down too. I began a journey of being comfortable when going outside in the cold weather. It helped with the indoor chills too.

However, a few problems arise from wearing baseball hats especially indoors. I hadn’t given much thought to the fact that wearing baseball caps indoors is against proper manners. A few elderly people let me know that it was rude. Since I am not one to be rude, nor to insult others, this bothered me. However, there became a choice I had to make, either I wore the hats when I went out, inside and outside as needed, or I quit socializing and going out to places where it could be a problem. I determined that it was best for me to explain to those elderly people close to me why I have the need to wear the baseball caps. That never really settled the problem for some of them but I wanted to do it to be polite.

Another annoyance with baseball caps is they smush my hair! There are times when I can take off the hat and be comfortable. However, the most annoying problem with them is “hat-head!” So, I don’t look like someone who just crawled out of hibernation, I try to fluff my hair, get my wife to look at it, making myself somewhat presentable.

Today, I wear baseball hats, inside and outside, from the first beginning of cooler weather until it gets too hot and uncomfortable. I have noticed when I am at home, I can be more comfortable wearing a baseball hat.

Buy baseball caps which represent YOU. For me, when I wear something, it needs to represent me. So, baseball caps that have stupid or rude quotes or sayings on them, do not work for me. I won’t wear something that says “I’m with Stupid!” or “Stupid is with me” or anything profane or vulgar. Not only is that not my style, what if I happen to be out, need a cap and the only one handy has the quote, “I’m with Stupid” and I’m with my wife. Never would I say that nor imply it so why own it. Also, I’m not a walking billboard for some company so I steer clear of those unless its a hobby or a clothing label I like to wear that has a clean-styled baseball hat.

A collection of baseball caps. Over the years, I have managed to collect hundreds of baseball caps. Some of them are plain which I keep handy for those days when I am walking my dog or doing some household chore which could get the hat messed up. Those hats are ones that have been given to me at some event or something. A buddy got a free cap at some computer event he attended.

Most of my baseball hat collection consists of hats from places I have been, the Great Smoky Mountains, Shenandoah National Park, Iceland, Alaska, Africa, and the list goes on. I have an interest in railroading and its history, so I have a few hats with railroading logos.

I am passionate about God, dogs, and cats. My hat collection representing my faith in God is a bit limited right now. This is mostly because I am very picky about design and quotes of the Christian faith. I look for something very creative which has a quote I can support or believe without question. When I was younger, some men wore Christian hats which were the nerdiest geeky designs with awful quotes. To me, there were an awful representation of a awesome God. I look for something powerful.

If you know me or were to meet me, it would become quite evident that I have a strong passion for dogs and cats. I had a dog for nearly twelve years that helped me more than I can explain in this post with my health problems. He became a best friend. I have learned to love cats too, and to let them love me when they feel like it. I have a few hats with the quotes, “Woof” and “Meow” which I proudly wear.

I stay away from hats with quotes for causes or politics. I typically don’t wear hats with quotes or logos or designs on them which represent a cause or anything political. I am not interested in chatting with someone I don’t know about my views and thoughts on a particular cause or issue. Nor do I care to bring attention to myself. Why? I am doing my best to walk to wherever I am going and get done whatever I’ve set out to do. I cannot stand in one place for very long without some pain or discomfort. I don’t care to do that and bring it on myself. If I want to express my thoughts on a cause or issue, there are other places to do it which may reach a wider audience.

Colors… I used to be very interested in wearing what was in style and making all the colors match or at least not be too awful to look at. For those occasions when I want to be sure I look presentable, I have a few hats in colors that will match something I’d wear to a social event or church. Today, I’m colorful, love everything as colorful as possible, so I’m not quite as picky about which I wear.

To mesh or not has become the first question when purchasing a hat. Mesh? It’s the plastic backing used to make the back of a baseball cap. Many hats are made this way, but, there are some with a cloth backing. I tend to like the cloth ones better because they don’t make me look like Elmer Fudd or someone with a huge forehead that I am trying to cover up with a hat.

Cold? Trying to just be comfortable from all the nerve issues, try baseball caps.

Charcot-Marie-Tooth: Finding a Massage Therapist

“Professional Massage Therapist”
Photo by Ryutaro Tsukata

To my disappointment, I have to begin the challenging journey again to find a massage therapist. It’s been around five years since I had to do this. In the nearly twenty years that I have been using massage therapy for Charcot-Marie-Tooth (CMT), this will be my fourth therapist.

I began using massage therapy to help with muscle cramping, muscular and nerve discomfort, and what I call constricting – it feels like something is drawing the muscle together causing awful pain particularly in the feet. The therapy has proven to be effective in keeping me moving and enjoying life. Since I have been seeing a massage therapist, the pain has reduced nearly eighty-five hundred percent. However, I confess this has been because I have a session every three weeks. I saw my first therapist every week for several weeks, maybe even months until I got comfortable with every two weeks. Then, it was a gradual move to three weeks. Currently, I am still at every three weeks but I am aiming for four weeks with the new therapist.

First and foremost, when I look for a massage therapist, I am looking for someone who is certified medical massage therapist. I do not want a pleasure massage which you can book at a spa, beauty salons, gyms, and the like. While most of those are great for those who need it, I need the professional trained in medical massage, more specifically Deep Tissue Massage.

A recent consideration I had to make was whether I wanted to meet with a male or a female massage therapist. This time, I gave it some thought because there is a male massage therapist in a local town who is supposed to be one of the best massage therapists in the area. I have always used a female massage therapist as I find them willing to listen to my needs to help me accomplish them. Also, until I saw this guy listed with a local shop, there weren’t any male massage therapists with any reviews. For me, I decided I would consider him if the others didn’t work out. It’s really your comfort level or preferences.

An important consideration is how far I want to drive to the massage therapist’s practice. Where I live, it isn’t uncommon to drive a distance for products and services. However, there is always a “traffic factor” in going anywhere. Since driving isn’t a favorite pastime anymore, I decided to try and find someone as close to me as possible. Also, in my experience, I can be very wiped out and sore after a massage session. Therefore, driving becomes a even more of a challenge that I do not enjoy. Since I am retired, it’s easier to make appointments to miss the traffic.

Doing an internet search and asking your medical professional may provide some good leads on a massage therapist. Be aware that many primary care physicans aren’t very supportive of massage therapists and their work. Part of it is the lack of documentation for its benefits.

My first question when speaking with a person is whether they are certified to perform medical massage therapy specifically the “Deep Tissue Massage.” Also, I will share a little bit about why I need it. Since I don’t care to go into a lot of details on the phone, I’ll typically share that I have a form of muscular dystrophy with which massage has helped me live comfortably. If the person seems like they may be someone I can consider, they will ask more questions and I will share more with them. I have had a few candidates tell me they aren’t the therapist for me. Also, I like to ask about their licensing and credentials. Are they should be willing to learn more about their trade too? A good massage therapist should be always learning or taking classes to improve their skills.

When I find someone who might work out, I will share that I have CMT along with as much detail as I am comfortable sharing. Also, I will share the www.cmtausa.org website which has an abundance of information which can help the therapist. I shared that I have Type 1a. Not only does it allow the therapist to learn about you, but it also helps you to learn about them. If they are willing to go on the website and learn about you, that says quite a bit about their professional interest in helping you.

I have found someone I am considering and made an appointment. This is only the first step. A professional massage therapist will have some paperwork for you to complete. They will probably go over your phone conversation again highlighting important information to clarify anything they have questions about.

The session begins. The session can be done with you being unclothed or dressed in your comfort level. Comfort level means to shorts or your underwear or what you might deem most comfortable. For me, I prefer unclothed because it provides less hinderances for the therapist to do their work. Also, clothing is uncomfortable for me which I will explain in future posts. Anyway, I view the person as a medical professional which means they will handle nudity as my medical doctor would. Anyway, I am always draped, and privacy has always been their concern.

During the session, pay attention to pain and any discomfort. The therapist will benefit from you letting them know if the pressure they apply or some spot they hit or some muscle touched is painful. I must say, this is the challenging part for me. I have lived with so much pain in life, and pretty much ignored it, that I feel a bit awkward pointing it out. However, it is to my benefit for me to do so.

After the session. In my experience, the therapist will ask “how are you feeling” or any issues or some such. For me, that’s a hard question to answer. My pain and discomfort, usually an overwhelming tiredness, will not become apparent until later in the day or the next day. I will explain that and be certain to note any discomfort or issues I think the therapist should know about to share in the next session.

A few further thoughts. To me, it is important to be comfortable with the person you are selecting to do the massage. Frankly, you’ll be nude for the hour or so of your appointment. Being nude with a medical professional requires a bit of trust. While I haven’t had any emergency to arise during a session, I think it’s important that you are comfortable with the person possibly seeing you nude despite all good intentions or efforts to prevent that. If you are someone completely uncomfortable with that idea, then stay away from being nude. A work around can be figured out. Franky, when I first started massage therapy, I wondered what would happen if there was a fire or some explosion. I can’t run out of the building without clothes, and it is possible the therapist would see me without them. So, we talked about a plan. Silly? Naw, not really.

Keep a journal of how you feel, what hurts and when, after the massage therapy appointment and during the time leading up to the next appointment. Bullet points will suffice provided you can remember what they mean when referencing them later. For me, a journal proved to be priceless for several reasons. One, I get busy in life and may forgot important points to share with the massage therapist. And, two, it helps to provide points for the therapist to work with. Finally, it will be fun to look back and see how much you have improved physically.