column logo

Living with spinal muscular atrophy (SMA), routine is something I greatly appreciate. When I’m taken out of my regulated schedule, my anxiety is heightened and it’s difficult for me to accept the change.

My mom and dad are my main caregivers. We’ve learned over the years, through trial and error, how to create a system that works comfortably for all of us. Meanwhile, I recently spent a long weekend away from them, and it was more challenging than I anticipated. We haven’t spent a considerable amount of time away from each other over the last few years due to the pandemic and other personal reasons. 

And regardless of my situation and circumstances, my parents deserve a break. It would be selfish of me to keep them bound to my care 24/7. However, coping with their absence is one of my most difficult fears. They’re my security blanket. I feel the best cared for, and comfortable by them. Who knows what you need better than the people who raised you? They understand how my body functions, and could probably care for my needs blindfolded. However, I’m aware they won’t always be here, and it’s a preparation for a reality I need to intentionally start assembling. 

Continue Reading

I think the most challenging part for me when my parents are away is my sleep. Arranging for my nighttime routine is quite the project some nights. Meanwhile, having someone come in to care for me overnight, other than my mom or dad, makes me feel burdened with many worries. There’s a lot involved such as oxygen, pillows, wedges, lifting, etc.

The concern that puts me in a panic the most during the night is my care assistant not being able to hear me. I often call out a couple of times to be shifted and prevent bed sores. I sleep with my cell phone near me and an Alexa if my voice doesn’t carry loud enough. But there’s been times we’ve lost power during the night, and I couldn’t wake someone to care for my need. These are some of the things I carefully consider. I try to arrange them thoroughly, to keep my mind at ease and to get adequate rest. 

However, I feel in a situation like mine, when you depend on someone to survive, you can never be prepared enough. To someone able-bodied, these concerns may sound like paranoia, or silly to worry about; however, they’re valid thoughts when you’re fully dependent on someone. 

Read more about experimental therapies for SMA

In addition, waking my caregiver multiple times in the night makes me feel bad. I understand it’s their job, but I also realize they need rest as well. So, often I feel guilty, and I try to endure the discomfort for as long as possible. It’s even more frustrating when I wake them and we can’t find a comfortable solution. I sleep with a few pillows under my knees and prop my feet to prevent pressure on my lower back.  However, this forces me to sleep on my backside, which at times causes my sacrum to get irritated. Finding alleviation for that can become an impossible task. 

Meanwhile, expressing how to get me comfortable in bed can take several attempts to create an understanding. Being able to physically demonstrate what I need, causes challenges for both myself and the caregiver. This is why I find it important to have my parents demonstrate the routine before their absence. And even with their demonstration, it takes time and patience to learn how to handle someone with a plethora of physical needs. 

I try to always stress the importance of having a couple of caregivers who you trust and understand your routine. Hang on to them like precious rubies because change can be very difficult for those whose physical needs are so complex.