Log In or Register to Join The Conversation!

Sponsored Post

The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.


This topic has 5 replies, 3 voices, and was last updated 2 years ago by Ryan Berhar.

  • Author
    Posts
    • #14078
      Kevin Schaefer
      Keymaster

      Most wheelchairs, especially permobil models, come with an attachable tray. Especially as I’ve gotten older and lost more arm-strength, I’ve become more and more reliant on my tray. I use it for working, reading and just using my phone or iPad. For me it makes things much easier, and I rarely go anywhere without it.

      However, I know many other people with SMA and other disabilities who never use their trays. For those of you who don’t use your tray, do you use a different kind of adaptive equipment? Certainly do what works best for you, but I was just curious.

    • #14098
      DeAnn R
      Keymaster

      Honestly I hated using a tray.  I used one throughout middle school and ditched it the instant I got off the bus.  Didn’t use it in Sr. High.  For me it felt my mobility was restricted.  Funny, you find the opposite.  That’s what’s great though, everyone finds what works for them.  It’s nice to see what works for other people in case it would be something that would work for you.

      • #14099
        Kevin Schaefer
        Keymaster

        So there are times when it is restrictive, but for the most part I use it like a desk. For instance, I need it to prop my phone. Otherwise I’d have to rely on other people to type on it for me.

        Are you able to hold things like your phone when you’re on the go? For me I just don’t have enough arm strength.

        • #14101
          DeAnn R
          Keymaster

          Most of the time I just have my phone on my lap.  I am looking for a holder for it, just not sure yet what I want yet that would work for me.  For a tablet I do need to use a table.  Recently I acquired a cute hospital type table.  Since it has wheels it’s pretty easy to move it around.

        • #14102
          Kevin Schaefer
          Keymaster

          Yeah I’ve seen a lot of SMA people just put their phones on their laps as well. I’ve tried that but it doesn’t work. I can’t keep my phone steady there, and I don’t have enough flexibility to move my hand back and forth to my joystick. That table sounds cool.

    • #14111
      Ryan Berhar
      Keymaster

      The only time a tray is helpful for me is writing—something I never do anymore. When it comes to using my phone, or really anything else, I find it restrictive.

Viewing 2 reply threads
  • You must be logged in to reply to this topic.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account

Copyright © 2017-2020 All rights reserved.