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.