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Assessment Nerves
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?
https://elizabetteunplugged.com/2018/09/25/how-to-be-rocky-balboa/
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