I realized that I haven’t actually shared a lot about the more medical parts of my life and SMA. That’s because, honestly, they’re not something that I think about all that much – I’ve been using many of them for so long that they’re just normal parts of my daily life!
But I thought it might be interesting to share a little bit about them today. I’m going to talk about all things assistive, from the medical devices I use to the assistive tech that helps me be more independent.
This is the most obvious, so I’m not going to spend tooooo much time on it. I use a power wheelchair – I don’t have enough strength to push a manual one. It’s pretty high tech – it can raise up in the air so I can get closer to eye level with people – this is great socially, and also helps me reach things that aren’t down at my height normally. It can also tilt and recline so that I can change my position (and so that I don’t get a pressure sore, which could be a huge problem). It even has a USB port so I can charge my phone through my chair! I charge my chair each night – it could probably last two days, but I’d rather be safe than sorry.
My Feeding Tube
I use a feeding tube overnight to supplement my calories. I eat “normally” throughout the day, but I’ve never had a huge appetite, so using the feeding tube overnight just makes sure I’m getting all the calories that I need to stay healthy. I got my feeding tube around 10 years ago now – before I got it, I went through a 2ish year period where I lost a lot of weight accidentally without realizing it. It had a really, really bad effect on my life. I felt like I was constantly out of breath, and my heart would race. By the time we figured out my weight loss was to blame, I just couldn’t eat enough to gain the weight back – I was basically burning more calories by eating and breathing than I could possibly take in each day. The decision to have the feeding tube surgery was, quite frankly, one of the most emotionally challenging ones that I’ve had to make. It was absolutely the right decision – it really improved my life almost immediately – but it took me quite a while to wrestle with it beforehand.
The feeding tube itself is pretty simple! It’s a pump (this is what it looks like). Each night, a bag gets filled with “formula” and pick the rate to set it to depending on how many calories I want and how many hours I’m sleeping. For people who rely on tube feeding for their nutrition, the math is a little more important, but I can be a little less careful about it because it’s supplemental. I have a little “Mic-key button” in my stomach that was placed surgically; the feeding tube bag attaches to this. I hook it up when I go to bed and then unhook in the morning!
Since COVID, more people have probably heard about ventilators than before! I don’t rely on mine to breathe 24/7, I use it overnight (a theme! ha.). When you sleep, your breaths naturally get shallower and slower. Since I already have a lower than normal lung capacity, using a vent overnight makes sure I’m taking nice, deep breaths while I sleep. I use this mask – there are so many different masks that people use. When I was in high school, I got really sick from the flu and had to be hospitalized. I used a different mask back then, and actually still have a scar on my nose from wearing that mask for so many days in a row. So now, I like masks that have as little contact with my face as possible.
Cough Assist Machine
This is a really cool machine – it basically mimics a cough (hence the name). Since my muscles are weak, I can’t cough strongly, so this machine helps me. It’s especially great right after I wake up and am dealing with allergies/sinus drainage, or obviously, when I’m sick. I usually use it in the morning and at night, but when I’m sick, I use it more often.
I know this isn’t just assistive tech, but it’s been so great for me. I especially love it for controlling outlets and lights – most light switches are way higher than I can reach, and this lets me turn the lights on and off! It’s something small, but it actually makes a really big difference in my life. A little bit of independence can go a long way.