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Accomplishments with Spinraza
Today I opened a Tupperware container without using my teeth! Yes, it took some finagling, but I did it. Will I be able to do it on assessment day? Maybe, maybe not, but today I did it. Sounds silly, but this is a task I wrote off many moons ago. One of those things I had to plan ahead for or forego until someone was around to open it for me. #feelingaccomplished #itsthelittlethings
For those wondering, I’m 5 doses in, 38 years young, type 2. Have you noticed improvements?
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4 Replies
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That’s awesome DeAnn! Glad to see that you’re noticing improvements.
I go in for an evaluation in a few weeks, and will be able to see then if my strength has improved. After five doses, my arm strength is still pretty stagnant, but it’ll be interesting to see what tasks I’m able to perform at the evaluation. Currently, I still need extensive help moving my hands, even slightly. I’ll post here again after my evaluation.
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Congrats DeAnn! That is huge! 🙂 Love hearing this kind of thing.
I have my post loading dose reassessment on July 24th. That’s basically the Hammersmith with I suppose some variations. Interested to see if there are any differences. A lot of that depends on how you feel or whether your body is cooperative when you’re actually being assessed along with fatiguing.
One of the things I’m also interested in is if there is any difference in proximal vs. distal muscle groups with Spinraza. I raised this to my PT a few weeks ago and she mentioned that studies are being done on the topic of Spinraza’s effect on different muscle groups through MRIs? I haven’t looked into this, but curios about this whole topic.
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Very interesting Mike! Keep us posted on how your assessment goes. I try not to read too much into it, but it’s kind of like a challenge to me. As far as your priximal vs distal muscle question I’ll be intrigued what the findings would be. For me it seems like the movements I’ve lost most recently are where I’m seeing most improvements. Not leaps and bounds improvements, but heading in the right direction anyway.
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DeAnn also big support from me.I m really glad to hear that improvement at you from Spinraza.Specially you are older person with SMA.
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