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This topic has 2 replies, 2 voices, and was last updated 2 years, 3 months ago by Kevin Schaefer.

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    • #17038
      Kevin Schaefer
      Keymaster

      Hey everyone, hope you all are having a great week! Here’s my latest column:

      https://smanewstoday.com/2019/02/05/acquiring-more-independence-is-exhausting-but-worth-it

      It’s taken time to get to this point and have more care and independence. Even in college when I had multiple caregivers throughout the week, I didn’t have a full-time job that allowed me to pay for hours that weren’t covered by the government. I kind of felt guilty when my parents and grandparents were the ones covering those hours.

      Today, I’m at a point where I can afford those hours, and I finally have good people throughout the week. It takes away a lot of my burdens, and I’m at peace knowing that my parents don’t have to do everything for me.

      I wrote this column partially so I could articulate just how difficult it can be to manage your care plan and acquire independence; but also to encourage people here and people with other disabilities to not give up. Independence is possible for all of us, but you have to commit to achieving it.

      In what ways are you independent? What areas of your life do you want to be more independent in? What questions do you have?

    • #17054
      DeAnn R
      Keymaster

      It’s definitely worth the effort, but yes it takes time and commitment to live independently.  Your list reminded me I have to find a fill-in for next Tuesday. I also have to confirm I have coverage for the end of the month when my PCA will be on vacation and schedule my ride for my Spinraza injection in March.  Plus it’s all the little things I have to remember to have my PCA’s do while they’re here.  More often than not about 5 minutes after they leave I think, oh shoot I was going to have them do abc so I can do xyz.  It took me three days before I remembered to tell my new PCA to push in the chair so I can have Roy close the curtains when it gets dark.  Do any of you make lists?  I’ve thought about it, but that’s another effort I don’t know if I want to hassle with.

      Traveling is where my independence comes to a screeching halt.  I was in junior high the last time I flew.  Between getting there, the accommodations and care I just don’t know how it’s feasible to do most trips.  When I hear about events I just have to tune it out because I know in all likelihood I couldn’t pull it off.  Any travel experts out there?  I’d love to know how you do it.

      • #17058
        Kevin Schaefer
        Keymaster

        I don’t have the energy to make a list either haha. I’ll write down reminders in my notes app on my phone, but creating a whole other organizational calendar is too much.

        And yeah, I’d be lying if I said I wasn’t nervous about flying this summer for the SMA conference. I’m comfortable with road trips, but even then there are always obstacles to work around. Fortunately now, there are more online resources and blogs about traveling when you have a disability. My next podcast is with the founder and president of the organization All Wheels Up.

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