SMA News Forums Forums Treatments and Research Spinraza (nusinersen) Post MDA Clinic/Occupational Therapy Evaluation

  • Post MDA Clinic/Occupational Therapy Evaluation

    Posted by kevin-schaefer on November 30, 2018 at 4:02 pm

    I’m pretty exhausted, so I’m going to keep this post short for now and add more later.

    I just got home from the MDA clinic, which I go to about two times a year. Part of this includes an occupational therapy appointment, in which I do a series of tests with the OT to evaluate the effects of Spinraza. The tests include picking up a couple coins, using a marker to draw a line through a maze, moving a weight across a table and a few others.

    I scored a point higher than the last time, and the test I was really surprised by how well I did was the marker one. That’s the most I’ve drawn in years. Whereas last time I only finished part of the maze, I completed it this time. The weights were a little harder at first, but once we figured out that my armrest on my chair was preventing me from moving my elbow, the OT let me have it moved out of the way and start over to get more accurate results. She was fantastic to work with, and was both attentive and helpful.

    Like I said I’ll write more about this later, but I’m pretty pooped. I had this, physical therapy and a physical with my primary doctor all in the past few days. Hope everyone here has a great weekend.

    kevin-schaefer replied 5 years, 6 months ago 5 Members · 10 Replies
  • 10 Replies
  • michael-morale

    November 30, 2018 at 5:48 pm

    Way to go Kevin.

  • ryan-berhar-2

    November 30, 2018 at 9:57 pm

    Glad to hear that!

  • deann-r

    December 3, 2018 at 12:49 pm

    Improvement is always impressive.  I almost messed up drawing through the maze because I started with an awkward grip on the pencil.  Luckily I still did it without lifting the pencil, so that’s not where I dropped the point.  Have you done an assessment before every injection?  So far I have a overall gain of 4 points on the upper limb scale even though I dropped a point on this last one.

    • kevin-schaefer

      December 3, 2018 at 12:59 pm

      Not before every injection. I’ve done three. They’ve been in December 2017, June 2018 and December 2018. How often do you do yours? I just do the OT evaluations at the MDA clinic, which I go to twice a year.

      • deann-r

        December 7, 2018 at 11:43 am

        I’ve had to do an assessment before every injection.  I think it’s kind of overkill to be honest.

      • kevin-schaefer

        December 7, 2018 at 11:46 am

        Interesting. I agree that that’s a bit excessive. I definitely notice more changes in between several injections than in between just one.

  • adnan-hafizovic

    December 4, 2018 at 12:13 pm

    It is good to hear that you have some improvement after using Spinraza.

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