I think we can all agree that ALS sucks. One of the cruelest jokes of this ridiculous disease is that as I progressively lose control of my fine motor skills, and hands in general, the more medications I take on a daily basis. I’ll be the first to admit that I’m not the best at taking all of the pills, all of the time, but as part of my 30 by 30 I am going to give it everything I have.
Part of this challenge is to educate and motive others to accomplish their own goals. Here’s my daily intake and why:
Morning – All in One Gulp (sometimes)
- Sertraline – makes me happy, happy, happy 🙂
- Riluzole – only FDA approved drug to slow the progression of ALS
Bedtime – Never in One Gulp (ever)
- Nuedexta – this is a fun one, I’ve started developing signs of Pseudobulbar Affect or PBA, so this med helps me control my facial expressions by adding spacicity
- Tizanidine – another fun side effect of ALS is constant muscle cramps, especially at night. Seriously, I can just about sleep through a Charlie Horse, it’s the joint cramps that keep me up. This med helps me, and my husband, sleep at night.
- Glucopyrrolate – no muscle control in my face = excessive drooling. Now, anyone can tell you I’ve always been a drooler, but it’s MUCH worse now and my poor husband gets the worst of it -__-
- Mononessa – birth control, because it’s not time for that…yet 🙂
- Rasagiline – completed my first clinical trial in Aug 2016 for this drug, FDA approved to slow the progression of Parkinson’s Disease so the thought process is if Parkinson’s, why not ALS?
Side note: I’m not a doctor, nor am I claiming to fully understand these meds or the combination of them in relation to ALS.
- January 2nd – Successfully ingested all the pills check
- January 12th – 10 day progress check I was super late taking them Sunday, but so far no dose has been completely skipped
- January 22nd – 20 day progress check
- February 1st – Completion of task
1.19.17 – This is pretty cool, submitted my Rasagiline for refill and received it by mail today. Here’s the breakdown on cost, insurance coverage, and my out-of-pocket:
1.22.17 one $70 trip to Walgreens for the remaining refills and this was my savings