• Welcome!

    Posted by kevin-schaefer on December 20, 2017 at 1:14 pm

    Welcome to the SMA college students forum! This is a public forum for SMA individuals who are either in college, want to attend or have graduated. I am a 24 year-old with SMA Type II, and in 2016 I graduated from NC State University with a B.A. in English. I now work here at BioNews full-time, and you can access all of my articles and podcasts at SMA News Today.

    To start the discussion, please post brief introductions of yourselves and why you’re here. Are you currently in school or looking into college? Or have you already graduated?

    This forum is public, so for a more privatized discussion please join the SMA patients group. You can also private message anyone here.

    Thanks for joining us here!

    deann-r replied 6 years, 2 months ago 3 Members · 3 Replies
  • 3 Replies
  • carson-berry

    January 4, 2018 at 10:28 pm

    Hello, everyone!  I am a Junior at Coastal Carolina University in Conway, SC majoring in Marine Science with a concentration in physical oceanography, and I am also minoring in German.  If all goes smoothly, I plan on graduating in May 2019! After that I will either end up looking for work or put myself in more debt and go to graduate school with the hopes of making more money with a graduate degree.


    I lived on campus my freshman and part of sophomore years and had a caregiver agency help me out in the mornings and evenings, which was an experience within itself and eventually led to me moving back home to be a commuter.  Currently, my mother is paid by the state to be my assistant and she follows me to class and all that good stuff.  If anyone has any questions about transitioning to college life with SMA, especially about going into the sciences with such a physically limiting condition, I’m all ears–or eyes in this case.


    With my graduation upcoming, I would be interested in hearing from others who have graduated about how they transitioned to the workforce, as I know there are many obstacles and things to consider when it comes to insurance, social security, etc., or even transitioning to grad school if anyone has done that.

    • kevin-schaefer

      January 5, 2018 at 12:36 pm

      Thanks for sharing Carson! This is all valuable information, especially for people who are looking into college but have reservations about living on campus or just managing the workload.

      I commuted throughout my 4 1/2 years at NC State, and I hired a couple friends to drive me around my Junior and Senior years. Independent Living had given me 30 hours a week, which I used for this.

      As far as entering the workforce, the rules for North Carolina Medicaid have changed so that if you’re on SSI and you get a full-time job, you can just stop receiving your SSI monthly checks and retain Medicaid. This allows you to make a substantial salary and hold on to your medicaid benefits. I also recommend the organization Vocational Rehabilitation. They helped me a lot in college and help disabled individuals find work.

      Thanks for your input!

  • deann-r

    January 17, 2018 at 10:59 am

    Guten Tag! (That’s about the extent of my German.) I too had a PCA agency caring for my needs in college.  On more than one occasion I was stranded in bed when no one showed up to get me up in the morning.  It actually happened my first day!  Luckily I slept with my phone, so could call for assistance.  On one occasion my phone had died, so I had to call out when a neighbor was walking past.  Frustrating for sure.  My Mom actually had to stay in my apartment for almost a semester one year when the agency was short staffed.  Aren’t moms the best?!  Eventually the agency figured out I wasn’t going anywhere so covered the position.  Now that I’m on my own I’m with an agency that allows me to find my own staffing and I have a PCA overnight, so at least I don’t have to worry about being stranded in bed.  I was resistant at first to having the PCA overnight.  Now I’m used to it.  Getting the hours for overnight was a struggle as the county was requiring I have someone but not willing to approve the hours.  Needless to say if they required it they had to approve it.  Nothing is easy, but persistence pays off.

    I think it’s awesome you’re going into the science field.  A bit jealous though.  Meteorology was what I wanted to go for, but I couldn’t line up housing and PCA care at the only college in my state to offer the program.  Ended up getting a degree in business although a lot of my electives where in science.

    Best of luck on your journey!


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