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.
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.
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.
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.
Happy Father’s Day! I hope you are enjoying time with your father or someone who has been like a father to you in your life.
I created the special “Father’s Day” graphic to remember my father this Father’s Day! One of his favorite events to attend was the Washington D.C. Auto Show held at the Washington D.C. Convention Center every January. It was three levels of nothing but new cars, pickup trucks, SUVs, mini-SUVs, and the like.
As a young boy, Dad would take us every year to the show when it was held between Christmas and New Year’s Day. Along with that was a trip to McDonald’s and a hobby shop to look for train models.
As I grew older, our trip changed as it was moved to the end of January. The hobby shop had closed years ago, and my interests had changed too. I would take the day off from work and go every year with my father to the new car show. After the car show, we would head to Tower Records, which had the best classical music CD selection anywhere. We always came home with our arms loaded with information on new cars and, of course, new CDs to add to our collections and listen to while going through the new car material… again.
As a man with Charcot-Marie-Tooth (CMT), those trips were challenging and often very painful on my feet. And, I would always end the day in lots of pain, never failed. However, I never told my father that. I’m guessing he had an idea, but we never really discussed it. I didn’t want him to know because the day always meant something special to him.
While we were never able to toss the football together or do some of the sports activities like other fathers and sons did. However, we went to car shows, went on steam locomotive rides, enjoyed hot rod car shows, and did many other activities like those instead.
As I’ve gotten older, getting around suburban areas like Washington, D.C., has become more difficult, and the pain has increased. When the Car Show commercial comes on TV each January, I think how nice it would be to go again with my father.
I miss Dad. While I have thought about going to the Car Show with someone else, it is a matter of distance now that I’ve moved to the country. And, it really would not be the same without Dad.
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.
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.
Daylight Saving Time begins tomorrow. When I was working in an office, this was one of my favorite days of the year because it meant I could spend more time outside after work.
Now that I am retired, it really doesn’t matter to me because I can be outside anytime of the day that I want. I just anxiously wait for the warmer weather to settle in for the season so I can be outside!
Remember, set your clocks ahead one hour before bed Saturday evening, March 11. You don’t want to miss church on Sunday!
“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.
Don’t forget to say “I LOVE YOU!” to those who you love on this Valentine’s Day. The day is a good reminder that we should get into the habit of saying that every single day, not just once a year when the holiday comes around.
My wife and I will not do much to celebrate the day today because we originally planned to go to a Bible Study which ended up being canceled for tonight. Either way, we rarely celebrate special days on the exact day of the event because there’s usually something going on at that time. For example, celebrating a birthday during the work week isn’t convenient for us so we celebrate it the weekend before or the one after. For Valentines Day, we have dinner and a Christian comedy show planned on Friday night. We can be out late, if we want, and sleep in the next day.
I hope you have an awesome Valentine’s Day with those your love.
