I’m working to resolve some home equipment malfunctions

One of my rules is that nurses cannot care for me when they’re sick. Although this creates challenges, I don’t want to risk exposure. Because I live with SMA, the repercussions of a virus or other cause of illness on my health would be severe.

Another thing that creates hardship is when my technology or equipment malfunctions. In many ways, when these things aren’t working, it’s similar to one of my nurses not being present for their shift.

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A broken bed and air conditioner

One piece of equipment I’ve been having problems with is my hospital bed at home. My bed needs to be able to roll around so that there’s enough room for me to be transferred in and out of it with my ceiling lift, but sometimes it’s hard to release the brake lever.

My mom and the nurses somehow always get it released, but it takes some effort. It’s been like this since I got the bed a year ago. The company has sent people to fix it multiple times, but none of the solutions lasted long. They are now going to replace the bed altogether.

This situation is similar to what I’ve been experiencing with the heating and air conditioning unit in my room. Last month, I wrote that the unit has been malfunctioning over the past year. The company has sent people to repair it more than 10 times, but they haven’t found a long-term solution yet.

This has resulted in many restless nights because I’ve gotten too hot. We’re still working to get the unit repaired, if not replaced.

The good news is that, over the past few weeks, I haven’t been getting as hot. I haven’t needed to ask my nurses to point the portable fan at me as often, day or night. I’m not sure why.

Here is more good news. For the past month, the unit has been efficiently heating my room without breaking. I like the temperature in my room to be between 76 and 78 F. That may seem warm to some people, but it’s just right for me. I get cold easily because I don’t move around much with SMA.

Computer problems

My desktop computer has also been giving me problems. North Carolina’s vocational rehabilitation program generously paid for a new computer, which I’ve been using since last summer.

However, my monitor kept going black. It did that with my old desktop as well. It began happening more frequently and staying black for more than a few seconds. My mom bought a new HDMI cable, which fortunately solved the problem.

The second issue was that my computer kept trying to update, but the progress bar got stuck at 0% for days at a time. In the meantime, I couldn’t use the computer.

Fortunately, I had my TD I-13 device to fall back on. The TD-I 13 isn’t just an alternative communication device; it also functions as a regular computer with internet access. So even when my desktop was down for days at a time, I could still get my work done.

People have tried several things to fix my desktop. The solutions would work for a few days, but then it would get stuck on the update screen again. We’re still trying to figure out the problem.

I hope I’ll soon be able to share how all these pieces of equipment got fixed or replaced. While it frustrates me that these devices keep malfunctioning, I have faith that everything will get resolved. I look forward to soaring into the day when all my equipment is working properly!

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.