Spinraza Dose 6 Tomorrow

[kevin-schaefer]

Good luck DeAnn! Hope it all goes smoothly, and that the PT assessment goes well. It’ll definitely be a tiring day, but hopefully one with good results. Let us know how everything goes.

[mike-huddleston]

Hope this went well, DeAnn.

[deann-r]

Thanks!  The day was long as expected, but everything went well.  My PT assessment showed an increase on the upper limb scale by 3 points!  Even though I didn’t tear through the paper, I was able to get the lid off the Tupperware container after some finagling!!!  Overall I’ve had an 8 point increase over baseline.  The physical therapist doing the assessment said that 8 points has been the largest increase they’ve seen in other adults, so that’s kind of amazing.  Continuing to see increases in the assessment will be more challenging moving forward as even if I see improvements the amount of improvement needed to get more points is significant.

The injection went smoothly as well.  When they got to my spine he was bumping into invisible bone or something but was able to work around it.  Also felt the zing to my big toe, but it was just momentary. I thought maybe I’d be more sore today, but it’s barely noticeable I got the shot.  No negative side effects…yet (knock on wood.)

[kevin-schaefer]

That’s great DeAnn! Those are huge numbers. I increased I think one point last time I did an evaluation, but that’s awesome you went up three points.

And yeah I had a similar issue with my last injection, in terms of the doctors taking a little longer to get the needle in the right spot. It was a little annoying, but I still haven’t experienced any side effects from the injections, which is huge.

Keep us updated, but glad it went well.

[mike-huddleston]

3 points in one assessment is huge, as is 8 overall!  This is excellent news to hear and I’m happy for you! Congrats!

 

I’ve felt the effects of the needle hitting a nerve channel (or whatever), but it usually just radiates a little – never down to my toes.  I have my first re-assessment on 7/24.  For some reason, I’m a little nervous about it.

[deann-r]

I’m already nervous about my next evaluation (4 months away).  What if this was just a good day and the next is on a bad day?  I know it’s ridiculous, it’s just after all these years of decline it’s nice to improve and I don’t want to go backwards again.  Good luck with your eval Mike!  I’m sure it’ll be great.  Do you have the same person doing the assessment?  I have and it’s nice as they can actually see the progress.

[mike-huddleston]

Hey DeAnn –

Got back from the reassessment a little while ago.  It went well.  And, yes, it was the same person.  My 9 hole pin timed test (they have a name for it but I don’t remember it) improved by about 4 seconds on each arm.  And the Hammersmith evaluation score went from 15 to 21.  It was really humid today and I had shorts on and kept sticking to the mat.  As if it’s not hard enough to move or try.  She adjusted the A/C, so that helped a little.

My first maintenance dose is at the end of October, so a while before I’ll need to do one of these again.

[mike-huddleston]

And a correction.  My PT just e-mailed me and corrected the Hammersmith score from 21 to 19.  Math error.  🙂

[deann-r]

Thanks for the update Mike!  Awesome improvement.  You can shoot for 21 next time.  15 to 19 is still a big accomplishment.  Kind of huge actually.  I blame the humidity for not being able to rip the paper, ha ha.  Keep up the good work!

[michael-morale]

FANTASTIC NEWS DeAnn. I think those of us that are adults will definitely see benefits regarding our treatments, but I truly believe that those of us that are also doing PT and/or OT in combination with our Spinraza injections will probably see better benefits.

Keep working and keep your beautiful smile, you’re a great inspiration to all of us.

[deann-r]

Thanks Michael!