Log In or Register to Join The Conversation!

Sponsored Post

How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 4 replies, 3 voices, and was last updated 1 year ago by Ryan Berhar.

  • Author
    Posts
    • #20017
      Rachel Markley
      Participant

      I’d like to talk RULM. I hate this assessment (yes, I know hate is a strong word). My biggest issue with it is reach – I can perform a lot of the tasks if the item is in reach but because I’m not allowed to elevate my chair high enough, most of it isn’t in reach. After speaking with my new OT she thinks it’s unfair for adults because of contractures, etc. Thoughts? Suggestions?

    • #20019
      Kevin Schaefer
      Keymaster

      Rachel, I know exactly what you mean. This particular test is by far the most frustrating part of my Spinraza evaluations. My OT is great, but it’s very difficult to meet the expectations of this assessment.

      I usually just try to score high on everything else. Do you do the pencil test where you have to draw a line through a maze? I’ve been doing well on that one.

    • #20020
      Rachel Markley
      Participant

      Kevin, I have that too but struggle to use the average #2 pencil. Do they allow you to move your paper?

      • #20021
        Kevin Schaefer
        Keymaster

        Yeah, I can move the paper, which helps a lot.

    • #20023
      Ryan Berhar
      Member

      I’m not even sure what that is, but frankly anything involving OTs has always annoyed me to death. I hate to say it, I know there are good ones, but they’re kind of out of touch in my experience.

Viewing 3 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.