When seemingly small changes turn into something much bigger
A columnist moves upstairs for a few days, which wasn't as easy as it sounds
It’s incredible how seemingly small changes can lead to something that turns out to be much bigger. Let’s explore this idea through my experience with SMA.
In February, I moved into a new house, where we converted the garage into my bedroom, bathroom, kitchen, and medical supply room. While my family resides upstairs in our generational home, having my own space has made a huge difference in meeting my needs.
However, in recent months, I noticed that the flooring in my room was buckling due to the weight of my medical equipment. I frequently move various items around my space throughout the day. For instance, my hospital bed needs to be repositioned often to align with my ceiling lift, which allows me to transfer between my bed, wheelchair, and shower chair. Additionally, I have a movable cabinet on wheels that houses both my suction machine, which is essential for clearing my airway, and my ventilator.
The weight of my wheelchair, which exceeds 400 pounds when I’m in it, combined with all of this moving equipment, was causing my vinyl flooring to lift. This could have led to serious injuries for my mom or the nurses if someone had fallen. To prevent this, we decided to switch to epoxy flooring, which provides better support for the weight of my medical devices.
Figuring out the logistics
What seemed like a small change — staying primarily in the living room for three days while the floors were redone — turned out to be quite significant. Typically, when I go upstairs for a short period, it’s not a hassle because I don’t need to take all my equipment with me. However, since I was relocating for several nights, I had to bring all of my medical supplies upstairs. My mom even rented a different Hoyer lift and hospital bed for the living room. And the packing involved seemed like we were going on vacation.
Interestingly, we’ve never rented a hospital bed when we’ve gone on vacation. We might consider doing this for future stays, particularly in Airbnbs, to avoid the issue of regular beds being too low. Hoyer lifts facilitate transfers into beds, but after a transfer, lower beds can cause my mom and the nurses to have to bend over too much while providing care. That could potentially cause back injuries. Meanwhile, a hospital bed has an adjustable height, which helps to prevent this.
Moving my medical supplies took several hours. The flooring work started on a Monday morning and was finished by Thursday afternoon. I have to commend my mom for bringing most of my supplies back downstairs on Thursday night, despite being exhausted.
Additionally, some items that had been left downstairs needed to be reconnected. My desktop computer stayed downstairs because I used my portable TD I-13 augmentative and alternative communication device, which also functions as my laptop, when I was upstairs. After the flooring was finished, my desktop had to be reconnected to the right power source. My Tobii Eye Tracker 5, which allows me to type with my eyes using an onscreen keyboard, also needed to be plugged back in and reactivated. Additionally, my router and Wi-Fi connections had to be restored, since my Wi-Fi enables me to control my TV, air conditioning, window blinds, and other devices in my room.
Despite the best efforts of my mom and the nurses, they couldn’t get all of the connections set up on Thursday night. As a result, I stayed in the living room for one more night. By Friday morning, however, everything in my space downstairs was up and running again.
I’ve developed a new appreciation for all the equipment and supplies that support my health. If even one item is missing or malfunctioning, it can disrupt my entire care routine. Ultimately, though, these tools contribute to a life filled with hope and joy.
Soar with me next time as I discover more things to appreciate about life!
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.
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