Top 10 ALS News Stories of 2017 JANUARY 2, 2018BY CAROLINA HENRIQUES Throughout 2017, ALS News Today brought you daily coverage of amyotrophic lateral sclerosis (ALS)-related advocacy events, clinical studies, and the latest research updates. We have compiled a top 10 list of the most-read ALS news stories of that year, with a brief description of … Continue reading 1.9.18 Top 10 ALS News Stories of 2017 – ALS News Today
radicava
Round 4, days 4 -7
Kenneth knocked out days 4&5 then I brought in a celebrity nurse for days 6&7 of this infusion. Wonderful best friend getaway in Austin for a couple of days of wedding planning and catching up. She completed both infusions and deaccessed the port without passing out, winning! ALS is teaching all of us new things. … Continue reading Round 4, days 4 -7
2017: A Year of Big Advances in ALS Research
Round 4, Days 1-3
Ringing in 2018 with round 4 of Radicava Ridiculousness. Had to stick twice to get accessed but I should earn my needle stick scar soon so that won't be an issue. Nothing exciting to report, which is a good thing, so I'm sharing with y'all pics of the fur babies Christmas presents.
Round 3, 9&10
and just like that, we're done with round 3. Round 4 starts 12.29.17. ALSFRS-R Scores: 12.10.17: 34 11.16.17: 35 10.19.17: 34 according to Radicava.com : ALS Functional Rating Scale–Revised (ALSFRS-R) The ALSFRS-R consists of 12 questions that evaluate 4 domains (fine motor, gross motor, bulbar, and respiratory function) in patients with ALS.1 Items: speech, salivation, … Continue reading Round 3, 9&10
Round 3, 7&8
de accessed the port after last nights infusion and it made this suction kind of pop when it came out. i jumped, and we almost lost kenneth. poor guy, he's come a long way with all this stuff. today's appointment included cookies #winning two more infusions and we're done with round 3, hooray!
Round 3, 5&6 and then some
Port life is a dream, round 3 is easy peasy lemon squeezey. Today was my 12 month visit for the PHENOTYPE, GENOTYPE, AND BIOMARKERS (PGB) IN ALS AND RELATED DISORDERS study at UTSW with Nina the Great. Good to catch up, got my blood on the second stick (after we shot the tube out once), … Continue reading Round 3, 5&6 and then some
Round 3, 3&4
Two more flawless infusions with nothing overly exciting to report, whoo hoo! I found this fun little info graphic the other night while I was looking for something in my insurance app. Interesting article from The New York Times: A New Drug for A.L.S., but the Diagnosis Remains Dire states: The Food and Drug Administration … Continue reading Round 3, 3&4
Round 3, Days 1&2
went back to the surgeon, turned out my tubing was pinched and that's what was causing all of the issues. Day 1 of round 3 was easy, hit on the first stick, easy flush, easy infusion. I got super duper nauseous a few minutes in but it went well. Day 2 was easy too, and … Continue reading Round 3, Days 1&2
11.27.17 Wake Up, Sunny!
Here we go, time to get up and get focused on the agenda. Last few days before round 3 of radicava ridiculousness begins, before christmas chaos starts, and time to add purpose back into the routine. I'm excited to share with you my "Sunny Do" list. Part of this transition has been to purposely focus … Continue reading 11.27.17 Wake Up, Sunny!
SunnyStrong 