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The Last Time I Walked By Myself

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.

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Dealing With Cold Temperatures While Living With Muscular Dystrophy

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.