Time to get up
My day begins like this: I wake up and call my caregiver (these days, it’s usually my grandmother or my friend, Sam), who turns off and disconnects my machines. I have a breathing machine called a BiPAP, a feeding pump, and an oximeter, which measures my oxygen concentration and heart rate. I’m usually pretty sore from being in the same position throughout the night, so I do some stretches. Well, I don’t because I can’t. My caregiver does it for me.
Toileting and showering
I need full assistance for both tasks. Having no privacy comes with the territory, and I have long since learned to accept that. I have chairs specifically used for the bathroom. The shower is one of my favorite parts of the day because the hot water is therapeutic. I used to shave about every other day, but I’m currently growing a beard, and let me assure you, it’s James “The Beard” Harden quality.
Because of my weakened swallow, I need suctioning throughout the day. I have several suctioning machines similar to what we’ve all used at the dentist. Before and after the shower I especially need it, because to swallow at all, I have to be in a certain position that’s not possible in my shower chair.
This usually consists of choosing a pair of jeans and either an Oregon Ducks or Seattle Seahawks shirt. Like you, for most of the year, I have to wear warmer clothes. But unlike you, the extra weight on my arms restricts my movement even further, which is frustrating. I can manage a sweatshirt, but it’s impossible for me to move in a heavy jacket.
Starting the day
I’m then lifted into my chair and buckled in. Getting me seated in the right position can be a challenge. Being even an inch off can affect my comfort and ability to swallow. Now that I’m up and ready, the first thing I do is watch “First Take,” my favorite sports show. If I’m hungry, I eat, but I’m usually not because my overnight tube feed fills me up.
Of course, day-to-day life varies, but one thing I love doing when possible is going to coffee shops — not only for the coffee but also just to get out of the house and be around people. Being there is great, but getting there can be hazardous. Many of the roads here in Bend, Oregon, are bumpy, especially in the winter. Because I have no head control, I’ve been hurt many times on the roads. Ideally, I will have someone hold my head, but this is often not possible because my brother and sister are usually at school. We try to avoid the worst roads, which requires some planning.
In my previous column, “Keep Your Hobbies Alive—You’d Regret Losing Them,” I explained that chess is important to me because it is one of the few forms of competition that is purely mental. There aren’t many activities I can take pride in excelling at because nearly everything involves at least some level of physical ability. Even with video games, which I’ve played my entire life, I’m still at a disadvantage. That’s not the case with chess. For the past eight months, I have had a slow game — meaning a player has 24 hours to move or else the other player can claim victory — going 24/7.
Eating and drinking
When it’s time to eat, most people only think about what they’re going to eat and drink. I also have to think about how. I need my food cut into small pieces. There are many foods that I can’t eat at all, because they are just too tough to chew. As for feeding myself, only my right arm is strong enough, and I still have to use lightweight plastic silverware. I also need assistance drinking because I’ve lost the strength required to lift a cup. I’m excited about some of this changing when I get my robotic arm.
The later part of my day typically includes watching sports, Netflix, or playing video games. My favorite franchises are “Call of Duty” and “NBA 2K,” but lately I have enjoyed “Fortnite.” Some of my favorite TV shows are “Breaking Bad,” “The Blacklist,” and “The Office.” At bedtime, I am hooked back up to the same machines and laid on my side. Getting me into a comfortable sleeping position is extremely difficult most times. I often experience a great deal of pain throughout the night as a result.
But tomorrow is another day, and I look forward to discovering what God has for me.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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