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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 2 replies, 3 voices, and was last updated 1 year, 5 months ago by DeAnn R.

    • Author
      • #13251
        Kevin Schaefer

        I’m weird in that I can be both a workaholic and a very laid-back guy. At times I overload myself, and others I’m just cruising by and working normal hours. Regardless, I commit myself to my work and I always strive to deliver my strongest performance.

        In terms of maintaining a balance, it is becoming harder for me to find free time during the week. I think it’s typical for a lot of Americans working in the corporate world, but still I find my job and my writing occupying so much of my time and energy. By the end of the day I have a little time to read and watch Netflix, but before I know it it’s time to get to bed and do it all over again.

        What does help me is taking Saturdays off. On Saturdays I sleep in, get lunch with my parents, hang out at the comic shop with friends and do other leisurely activities. It helps to clear my head by having this time in which I’m not staring at a computer or phone, creating documents and sending emails.

        Again, I know it’s typical for a lot of people today to find a good work/life balance, but I think it’s especially important for those of us with SMA. Maintaining our energy level is important, and it’s vital that we keep from burning out.

        What strategies do you all have for maintaining a healthy work and life balance? Is there anything in particular that helps you reduce stress? Is this something you talk about with your care team?

      • #13300
        Michael Morale

        While I was still able to work, and I still had the ability to drive myself in my own vehicle, my work/life balance was much different.

        I typically would go to work at 6 o’clock in the morning, and I would get home around 3 o’clock in the afternoon. After this, I would change out of my shirt and tie and put on a polo shirt and go teach college from 5:30 in the afternoon until 10:30 in the evening. Along with this, I would also go to school to finish my MBA and management. The part that surprises me is that it seems as if I had more time to do some of the things that I wanted to do even though I was so busy. Now that I’m on permanent disability, it seems as if there are not enough hours in the day to get everything done that I want to do.

        I don’t really understand how this happens, but I would give up all of my free time to be able to go back to work and especially go back to teaching. I really miss the interactions with all of the kids.


      • #13309
        DeAnn R

        I think it’s even more difficult when you have SMA because we try to do everyday tasks that physically are more taxing for us to accomplish. Not to mention all the extra stuff like breathing treatments, the additional time it takes to get up and going for the day, working in caregivers schedules and lots of other things your average person doesn’t need to consider.  Sometimes I think people wonder what I do all day even though it should be what don’t I do! One thing I do believe is that it is important to keep busy whether it’s work or hobbies, but like you said balance is important at least to try to attempt.

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