When this post is published in about 45 minutes, it will be February 7th, 2020. That is a significant date for me because exactly fifteen years ago on February 7th, 2005 was the last morning I took steps by myself.
That morning was not an ordinary morning at all. It started really early before 6am and involved going to what is now known as Rutgers University Hospital in Newark, NJ. I know it was early because I vividly remember how easy it was to find parking. If you’ve been there, you know how tough parking there is.
The reason I was there that morning was because, as you might have guessed already, I was having a lengthy surgery. I was there for Tendon Release surgery on my Achilles and Hamstrings. My ankles and knees were bending because of the progression of Duchenne Muscular Dystrophy. They basically go in and cut the tendon to make it grow longer which straightens out my feet and knees.
I want to clarify even before the surgery I had already started using a walker and was really struggling. I was probably going to have to start using a wheelchair within a few months anyway. The doctors and my parents knew going into the surgery that there was a 50/50 chance I was going to be able to rehab enough to walk again. It turned out that I couldn’t get enough leg strength back. I spent two months exactly away from home at Children”s Specialized Hospital rehabbing. I was happy to come home on April 7th, 2005, even though the house now needed to be made wheelchair accessible.
I have to say, I don’t enjoy thinking about that whole experience because of all the pain I went through. However, the date always reminds me of that period. It is hard to believe that was fifteen years ago but it definitely made me a stronger person. There was really no other purpose for this post than just venting. I don’t really remember how walking felt but I miss it occasionally when I encounter something inaccessible.
I will say that getting to use a wheelchair after all of that happened was such a freeing experience. Going from really struggling to walk to using a wheelchair is not the worst thing ever. I know a lot of parents of kids with DMD read my posts so I wanted to address them. When it is time for your child to start using a wheelchairI understand that there will be a high range of emotions but try to look at the positive in it. Your child may be excited because they can now move around with getting exhausted. My message is that a wheelchair doesn’t have to be a negative thing.
It is now November in good old New Jersey and that means the temperatures are starting to go down. It’s now time to prepare for barely going outside the next 4-5 months. It is now hitting 32 degrees at night and supposed to hit that during this upcoming week. If you live with Muscular Dystrophy, then you know that cold temperatures don’t get along well with us. I start having difficulty at about any temperature below 60 degrees. It’s also quite difficult to get and stay warm. It becomes a constant struggle with people being too warm in the house when you’re finally warm enough.
Cold temperatures reduce the little ability I have to begin with. Personally, my legs and feet become like ice and hands get so stiff that I can barely move my fingers to move my wheelchair’s joystick. One of the biggest reasons that people who have MD are constantly cold is because we have poor circulation. This is because we don’t really have too much movement.
The answer most people will think of is just putting on gloves, thicker socks, and a warm jacket but unfortunately I have yet to find gloves that are able to fit my hands properly and still allow me to use my joystick. I have difficulty putting on and taking off jackets because of my arms and they reduce my movement. I still wear lighter jackets and sweatshirts but that usually isn’t good enough when it becomes colder. I usually end up going with a blanket over me which does the trick enough to get in and out of the car. In the house, I sit with a heated blanket which works quite well. For my feet I have battery heated socks that work quite well.
To keep my hands warm enough, I usually attach a HotHands hand warmer by my joystick and then cover it and my hand with the blanket and that keeps it nice and warm. I’m always looking for new ideas or solutions to keep me warm. In fact, just today I ordered a heated blanket that works with a rechargeable battery pack. I will probably make a review video for my YouTube channel once I receive it.
If anyone has any tips or questions, please feel free to leave a comment.
When someone is in a wheelchair like me, they get used to hearing certain comments routinely. Comments such as, “Do you need a license to drive that?” and “You’re lucky you get to sit all day.” They’re both usually implied as a joke but can get quite annoying. The first question was something I heard constantly when I was younger but still hear on occasion. I can see it being a serious question but at this point, it is just an annoyance.
Now for people who say, “You’re lucky you get to sit all day,” I have no patience for. That is something you just do not say to a person. It used to bother me a lot as a child because it took a long time to get used to seeing myself using a wheelchair. Everybody deals with it differently and the person you just said that to might be having a difficult time accepting it. It could potentially ruin that person’s day even if it was meant to be a joke. My message would be to think about what you are going to say someone before doing so. My response to that comment these days is, “Want to trade legs then?”
After using a wheelchair for 13 years, there are many things that don’t cause me fear anymore. Mostly things like the way people look at me. However, in those years and for the foreseeable future, I will have the fear of going flying out my chair. Many people fear things without ever experiencing them or trying, well this is not one of those cases. In fact, I have two specific instances I vividly remember from over a decade ago where I basically “flew” out my wheelchair. By saying flew, I am exaggerating slightly but I most definitely fell out. One time I fell forward and the other I flipped backward head over heels.
The first time I fell was at a party and I fell in a very crazy way. I cannot remember exactly how old I was but it was early on in my wheelchair using career. At this party, all the kids were in an area outside of the actual party. Now, if you’ve seen a normal wheelchair you know they have anti-tippers on the back that prevent the wheelchair from tipping over. They also turn up and down which is important to this story. Mine were turned up because they would hit going up the makeshift ramp on our van.
Going back to the party, one of my cousins happened to be standing on the back on top of the anti-tippers. I, of course, was telling him to get off but he wouldn’t so I bent forward and with as much strength as I could produce I leaned back. Little did I know, he had stepped off five seconds before. I don’t know where my strength came from, but somehow the whole chair flipped back and I kid you not, my head landed on my cousin’s shoe. That, in all honesty, prevented a concussion. Obviously, I was in shock and started crying. People came running, including an older cousin, who was a doctor so he immediately checked me for a concussion before I was even back in my chair yet. That was the last time I forgot to check my tippers.
The second time I fell, I didn’t get out of it unscathed. It was a Sunday morning when I was ten years old. Now in my room, I had a mattress on the ground my dad slept on in case I needed assistance. On this particular day, we were setting up my first computer so I was quite excited. I decided I would help so I got close to the mattress and bent forward to grab some sort of cord. Well, thinking I was smart, I had not put my seatbelt on. As you can expect, gravity acted and sure enough I started to slide in almost slow motion. My dad ran from the other side of the room but by the time he could reach me I was on the ground screaming in pain. The worst part was that I missed the mattress directly in front me and landed on the wooden floor. Somehow from that, I managed to fracture the hardest bone in the human body to fracture, my right femur. I was in a leg cast for a couple of months. Ever since then, I have a mental freak out if my seatbelt is not on while in my wheelchair.
One of the biggest struggles I used to face was the transferring from the bed to wheelchair, wheelchair to shower chair, and everything else in between (yes, toilet too). For the first couple of after I started using the wheelchair, I used a combination of things. At first, I still had upper body strength so I used a sliding board. If you do not know what a sliding board is then well it is exactly what it sounds like, a smooth plank of wood that you can slide your butt across. When the sliding board wasn’t used I did what is called the stand and pivot (hahaha PIVOT) transfer. In order to do that my dad would lock his arms around my body under my arms and then he would stand me up and I would put weight on my feet and then we would turn and he would place me in the chair. I got the hang of that so it became routine unless my mom was transferring me, in that case, the sliding board was used because I weighed too much for her to safely hold me.
Now we did get a lift a couple of years later but for a good year it was never touched and was just parked in a hallway. I don’t really know why we didn’t use it earlier. That did change one day when we had no other choice. My dad was transferring me and right when he stood me up he felt his knee pop and put me right back down. He was clearly in pain so we brought the lift which is called a Hoyer lift in. Using it the first couple of times took a long time because it is a strange feeling. There is a sling that goes behind my back and under my butt and the crosses in front under my legs. It’s basically like a seat as you can see from the picture. If you have never heard of this kind of lift you are going to find actually being in the air quite funny.
The straps you can see have loops at the end that go onto these hooks attached to the lift. Once hooked on there, there is a handle that is pumped up and down and the hydraulics lift me up. As you can see it is my own personal swing and yes it does actually swing around and spin. I will admit the first few times I used it I screamed a couple of times because it felt like my butt was sliding out because well it actually was the first time. That was fixed by changing which loop was hooked on. These days this is the only way I transfer and it is one of the safest ways.
One of the things I get asked the most often is, “Can you stand?” Well, the simple answer to that is, “No, I can’t.” That has been the answer since the middle of third grade. Sometimes random people in public ask which can be annoying especially when that is the last thing on your mind. For the most part, the question usually gets asked at doctors’ offices the most when the nurses want to get my weight. During those moments I really do not mind because it is basically a routine that occurs all the time since it may not be the same nurse. Although you would think that would be written in my chart somewhere. Out of all the different specialists I visit, the only location that I can see how much I weigh is when I visit Dr. Diamond at Children’s Specialized Hospital. They have this sling that goes under my legs that attaches to a lift which has a built-in scale. It almost looks as if I was on a swing.
Now the answer of, “No, I can’t” is not exactly accurate depending on the way you look at it. The answer is technically correct but I do stand every day. You may be completely confused at this point if you do not know me personally. If I was reading this I would be thinking, “How can he stand if he is saying he can’t?!”
The answer to that is fairly simple, my wheelchair is a stander. If you don’t know what a stander is, it basically puts you into an upright standing position. My wheelchair has the ability to lay down and tilt which in turn can go up into standing position. In order to do this, I have to put a knee block on so my knees do not bend out which is shaped like a T. I also have a chest belt that I usually always wear but when I stand I do have to.
Some of you may be wondering why I need to do this. At this point, the main reason is that it is beneficial to my health.There was a period after my chair had a broken part where I was reluctant to stand for a good year after it was fixed. During that time I became sick a lot more often. After my physical therapist pushed me, I realized it was for my own good and I started standing every day again. I have not really become too sick every since then. Some other benefits are that it helps me with my digestion since I sit in the same position all day and it helps my back since I have slight scoliosis that has not become as bad as other people at my age with Duchenne Muscular Dystrophy. Many my age have needed spinal fusion which I have avoided. I believe my standing every day has had a direct effect.
Up until recently, I used my phone by just tapping on the screen with my finger while the phone was flat on my tray attached to my wheelchair. This is what I have been doing ever since I started using a cell phone. It seems simple enough, right? Well yeah, it was, until about the last 8 to 10 months. I found it was increasingly getting difficult to reach things on my phone and I was really starting to strain my neck to look down at my phone. To top it off I couldn’t really take pictures anymore or play many games or even really text.
I knew there were other options as I had seen some of them at the New York Metro Abilities Expo in 2016. I put that at the back of my mind and finally decided to look up more details after a couple of months. After doing the research I found there were 2 options that would work well for me. Those 2 options being the Tecla Shield and Blue2 Bluetooth Switch.
They both work using Bluetooth connection on iOS and Android devices as well as Windows and OS X computers. Both work by using switches that are pressed to do different functions on your device. The Tecla Shield can work with up to 6 switches plugged into them while the Blue2 has 2 switches built into it. Personally, I felt the Tecla Shield was the better option but it cost over $300 just for the device. I decided to go with the Blue2 which I actually bought on Amazon for just under $200. I admit it worked slow but once I got the hang of it the speed increased. Now I can do things I was struggling with without any issues.