Rachel Markley

I personally have never missed anything because of cold and flu season. Most people know to miss out if they’re sick and I’m in attendance and I have always felt I have to trust them. To me, being out and about is more important and I’m willing to take the risk. I mean, I work at a hospital, I know all about risks 🙂

Kevin, I can move my left big toe! And my left arm contracture went from -40 to -20. Dose #5 is on the 13th!

I don’t have a ton of questions – mostly cost, insurance approval, and drug interactions. And taste lol! Anything that avoids the words spine and needle in the same sentence and I’m down.

My winter doesn’t really change except on the weekends. I still have to work everyday but I the weekends I hibernate and mostly read or play computer games.

First off, I LOOOVE that show and think it’s highly underrated! Secondly, there are several children in my extended family that lived until age 1-2. Based on what family remembered, they more than likely had SMA but it would be cool to know for sure.

Work is a huge part of my daily motivation. It is hard to overcome the fatigue and the general challenges associated with navigating SMA and work (EX: a 2.5 hour wheelchair clinic this morning), but 98% of the time it’s worth it!

I had the start of one with my last dose. I drank a medium Mt Dew freeze from Taco Bell (recommendation from Biogen FAM) and it went away!

Literally me staring at my dinner last night while my parents heated their dinner, fed the dog, heated up the oven…

DeAnn, that’s why my OT and I decided not to demo. She was afraid if I demoed and it even remotely worked, insurance would go for it versus Jaco and Jaco would allow me to do way more.

It made me wish I’d chosen a career where I could make more money haha. No really it motivated me to just go do it and make the first move!

Hey Ryan! My OT was looking into this for me. If you find out cost can you let me know please?

Kevin, I have that too but struggle to use the average #2 pencil. Do they allow you to move your paper?

Your virgin pregnancy comment made me laugh as I say essentially the same thing for every blog post I write after an injection! The crazy long days are the worst part for me and are made worse because of the fact that I work at the hospital where I’m dosed. I’m requesting for my first maintenance dose that I be allowed to get my IV early and go…[Read more]

All the time and it’s so frustrating! I have this most with clinics and DME companies but the other day it took 2 full days for me to get an antibiotic because of communication errors.

This post made me laugh but also made me sad to realize how many times we miss out on physical contact. No other tips though!

I’m really struggling lately with everything in this blog. I’m over not being able to help and not having enough energy for fun. The fatigue has improved since Spinraza but it’s still hard working full-time and having 11 hour days.

I do believe Zolgensma will become available for adults, however, I have many concerns about it’s efficacy in those of us with neurons that are deader than dead. It took me a year and a half to come around to the idea of Spinraza and another year to get it. I get dose 4 Wednesday.

According to my mom, I was 2-2 1/2. I was easy to train after I was ready and it was my decision lol. I think she said seeing others at preschool not have to be changed helped a lot. Made me decide it was a good idea!