Traveling With a Neuromuscular Disease

As many people do, I enjoy traveling to different places. As I have grown older with DMD, traveling has become much more difficult and requires a lot more planning. One of the biggest challenges for me personally is I cannot really ride an airplane unless I’m sitting in First Class. The last time I rode an airplane was in 2010, but keep in mind I was much stronger then. The amount of lifting and maneuvering to get me on the plane wasn’t painful or anything. At this point, I cannot be lifted in that manner anymore so it isn’t feasible. That’s enough about airplanes though.

My purpose of this post is to highlight the difficulty of traveling by driving. My family used to have one long trip every year but they slowed down over the years as I started needing more assistance from different equipment. Before last summer, the last trip longer than 3-4 hours I had taken was to a cousin’s wedding in Nashville in 2012. I remember it well because it was a couple weeks after Superstorm Sandy had passed through the NJ/NY area. During that trip, the only equipment I needed was my manual wheelchair. I would have preferred my power wheelchair but then I would have needed a little more room that we did not have.

Fast-forward six years and I can no longer comfortably sit in my manual chair because it cannot tilt back. I also now sleep on a hospital bed with a unique mattress and use a BiPap machine for ventilation at night. There also is the fact that I cannot transfer without a lift. I also need to carry my Cough Assist machine and my shower chair. All that equipment has to fit into the van. Well everything besides the bed, I put the mattress on another bed because it can be folded after releasing all the air. If you have not heard of any of this equipment, you may think it does not seem like much but I will literally show the amount of room it all takes up.

As you can see, its impossible to take more people in one car. These pictures were from a trip I took to Ohio a couple weeks ago. I’m hoping to be able to take at least one trip every year. The good thing is that if I ever want to take a longer trip, there is the option of renting most of my equipment at the destination. I admit it can be difficult but going out of my normal daily routine to someplace new can be beneficial, not just for me but everyone.

The Importance of Wheelchair Accessibility on Beaches

Imagine this, you’re on your way to the beach for the first time. You’re anxious and excited and don’t know how the day is going to turn out. As you get closer you can see the shoreline getting closer and closer. You finally reach there and eagerly get out of the car to head for the sand. You get on the sand and then almost immediately you start sinking into the sand. You find yourself unable to move and find your day ruined. You may be wondering how you would be stuck.

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Beach Wheelchair. (n.d.). Retrieved July 31, 2018, from http://www.accessrec.com/pvc-chairs

Well, people who use wheelchairs like me would face that situation every time they tried to drive onto the sand. Beach wheelchairs do exist but they can be costly. They have rather large tires that don’t sink into the sand. Many beaches do have rentals available, often for free.

The problem with them is that for people with neuromuscular diseases like me, they do not have enough support. I need more support on my sides, arms, and especially my head. It would be too much just so I can get on the beach once or twice a year.

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Beach mats in Seaside Park, NJ

In the past, I have heard of beach mats that go right on the sand on some beaches in Florida and California. They are made of a hard plastic and wheelchairs can roll on top of them with no issues. I never thought I would get to experience that but I was wrong. About a year ago, I read an article that they were installing these mats that go about halfway down the beach in Seaside Park, New Jersey. That is a little more than an hour away from where I lived. I was extremely excited and immediately went to check it out. It was really a remarkable feeling to feel the breeze while sitting in the middle of the beach. A couple weeks ago I went with my family and I had a great time. Last time we all went I had to stay on the boardwalk while everyone went onto the sand.DSC_2435

All this was possible because of a mother of two kids with disabilities who started a nonprofit called, “Beach Days For All.” Their mission is to have all beaches in New Jersey become wheelchair accessible. Their efforts are what allowed Seaside Park to be the first town to in New Jersey to install the mats. The specific beach is located at F Street, Seaside Park, NJ.

 

 

My Fear of Falling

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.

Transferring 101

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. pivotIn 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.

IMG_4151Now 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.

IMG_4121The 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.

To Stand or Not to Stand

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?!”

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This was taken after I came home
home from my 2014 high school
graduation. I was going to stand
and drive up to get my diploma
if it wasn’t outside

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.