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?!”

1 (1)

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.

 

How I Use My Cellphone

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.