My SMA limitations mean the perfect positions make all the difference
It might look like fussiness, but it's really about comfort, health, and independence
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A caregiver recently told me that the more she spends time helping me, the more she learns what I care most about. This longtime friend already knows that I care about faith, relationships, stories, advocacy, and sunshine, so what she was referring to are the tasks I need done because of the limitations I have with spinal muscular atrophy (SMA).
I don’t really care all that much which towel we use to dry my hair or how my bed is made, but there are definitely things that I am particular about. I asked other members of my caregiving team to share what they think those things are. There were a variety of great answers (which told me a lot about myself, actually!), but a common theme that kept coming up was position.
Position in bed
I have what we call a pillow fort system to get me comfortable for the night. If all my pillows, my head, and my limbs are positioned exactly right, I can usually sleep soundly through the night without moving. But because of tight muscles, stiff joints, and poor circulation, I have become accustomed and very aware of the small details of minor discomfort that mutate into major pains after only a couple hours. These things matter! So my caregiver patiently takes all the time I need to tuck my blankets, adjust my night clothes, fluff my pillows, and tweak my position until I am blissfully settled. They know it is worth it for us both to get a good night’s sleep.
Position in my wheelchair
Similarly, when I get up and into my chair every morning, there is some careful shuffling needed for me to feel stable and comfortable. My scoliosis causes me to lean heavily to the left if I’m not well supported, which causes pain in my neck, shoulders, and hips. We have different tactics, like scooting my backside, shoving my knees, and propping my elbows to adjust me until I am centered. If we don’t, I struggle all day just to hold up my head, access my joystick, and maintain my balance. And if I have an especially bumpy ride on a sidewalk or in my van, I usually need another adjustment.
Position of items around me
One friend said the reason it matters to me where things are placed is because I’m likely planning ahead to be able to access things more easily. That is so true! My range of motion is very limited, so if I am alone for several hours during the day, it is important that I am able to get to the things I want or need. Few things are as frustrating as finding my current book or bag of dark chocolates sitting only inches out of reach!
All of this attention to position might look like fussiness from the outside, but it is really about comfort, health, and independence. The smallest adjustment can determine whether I sleep through the night, move through my day without pain, or reach what I want when no one else is nearby. My caregivers’ willingness to be mindful of these details is one of the ways they care for me most deeply. They help put my body and my belongings in the right position, so that I am better positioned to enjoy my life and focus on the bigger things that I care about most.
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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