• Assessment Nerves

    Posted by deann-r on September 25, 2018 at 10:00 am

    I’ve mentioned before that many of us get physical therapy assessments to gauge progress while on Spinraza.  A blog I follow touched on this topic along with the anxieties and emotions this seemingly simple activity can cause.  https://elizabetteunplugged.com/2018/09/25/how-to-be-rocky-balboa/   I myself can relate to her longing to tear through folded paper as well as her sense of accomplishment when she finally got the lid off the Tupperware.  Although I’m thrilled to have made even the slightest improvements there’s an area in my brain that thinks “Oh crap, now I have to do better next time.”  Heading into winter months I just don’t know if that’s feasible.  As Elizabette pointed out a lifetime of Spinraza isn’t a certainty, but I don’t want to be the one to mess up my chances of getting it.  Or worse yet have it be the reason it’s denied elsewhere to others.  Rationally I know it wouldn’t be my fault, and I know my team will fight for me to continue treatment if that ever becomes an issue.  Still, being a pioneer in this venture has its moments of doubt.  My next assessment will be in November.  It is what it is and I’ll do my best even with my iceberg hands.  What are your feelings on the assessments?  Do you have anxieties or is it no big deal?



    michael-morale replied 5 years ago 3 Members · 2 Replies
  • 2 Replies
  • kevin-schaefer

    September 25, 2018 at 3:08 pm

    Yeah I can relate. I definitely feel that pressure, like people are expecting improvements each time. The last assessment went really well, but I also am not sure what I’ll be able to do when it comes time for the next one.

  • michael-morale

    September 26, 2018 at 12:06 pm

    Here’s something I’ve never understood. We hear about all these tests that we are supposed to go through while receiving our injections. The only test that I’ve been through was about six months ago when I went to see my neurologist. She did a grip strength test and she also tested my range of motion with regards to my arms, neck and shoulders, and in my legs. All of the other assessments have been done from my physical therapist every four weeks when she reevaluates me. There’s really not a scale that we use in measuring some of my muscle improvements, so I question some of these tests because there doesn’t seem to be a standard test that we must all go through. I know that my physical therapist can measure certain parts of my reevaluation with regards to muscle tone and strength, but core strength and other muscles such as my back and my neck are subjective tests that she does. Either way, I know I’m getting stronger by the way that I feel because I don’t have to have as much assistance when going down a steep hill in my balance is much better in my wheelchair than it used to be.