so i didn’t explain how we are going to track this Radicava adventure. The schedule is 14 consecutive days of infusion then two weeks off. Next is 10 infusions over a 14 day period. Then another two weeks off, and the cycle continues with 10 infusions, two weeks off, and so on until further notice.
my plan is to:
- continue to post after each infusion.
- complete an ALSFRS-R after each round for a quantitative assessment.
- include notes with each post for qualitative assessment
- include a rating on a scale from 1-10 with 1 = death and 10 = million bucks after each infusion.
Sound like a plan, Stan?
My ALSFRS-R score on 10/4/17 was 34. here are my historical scores:
Round 1, Day 3 notes: some lightheadedness in the afternoon, took a power nap and felt so much better.
Round 1, Day 3 rating: 6
Tribe support for life 💜