How comfort and routine are vital while living with SMA
Because I live with SMA, I value comfort and routine, which help to alleviate some of the hardship and stress that come with managing this disease.
Since January, a new day nurse has been doing her best to provide these things for me. Her excellent care helps to protect me from the stress of recovering from a recent fall that was very painful and resulted in a slow recovery. I’m grateful that she works 40 hours a week for me.
I’m also in the process of finding and training the right people to provide me with the same type of comfort and routine at night. This is because one of my night nurses left in March, and I needed to find one or two nurses to cover three nights a week.
The two nursing agencies I use were able to find good replacements by the time my night nurse left. Unfortunately, one replacement turned out to be only temporary. Hopefully, she’ll be able to continue working some hours, though. Others are filling in the other shifts, and I hope they stick around.
The nurse who works Friday and Saturday nights is also good at providing me with comfort and routine. One way she does this is by being on time, which may seem like a minor thing but is actually very important. My mom, who also is my caregiver, and I agree that punctuality is a sign of respect for a patient and their family.
When I’m in bed, I love it when my nurses ask me if my head and arms are in a good position. If my arms are resting on the upper part of my body, they’ll fall asleep after a while, so I like to position them near the lower part of my body.
For my head, if the pillow is positioned too low under my neck, it can cause more secretions from my mouth. When that happens, my nurses have to suction my mouth more frequently. When the pillow is positioned too high under my neck, it’s hard for me to talk. So my head has to be positioned just right.
As you see, the focus on my comfort isn’t about being picky — there are important reasons for it.
Also, I never lie on my back while sleeping to avoid getting pressure sores on my bottom. I sleep on either side and am turned every couple hours. If I’m not turned over far enough, not only is it uncomfortable, but I could also get a pressure sore.
There are many other examples like this of how comfort, routine, and safety go hand in hand and help me to soar!
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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