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.
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.
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.
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.
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.
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.