Rachel Markley

I also feel the same and it’s stressing me out because I work in a hospital and need to go back in soon! I have no solutions though 🙁

Doing things alone – i.e. shower, bathroom, eating, etc.

Mine is Wednesday and only my second maintenance dose but I seem to slump around week 12 as well and by this last week I can hardly function 🙁

Yay!!!!! You will need to purchase your own supplies and try to determine what kind of setup you’ll use on your chair (if you’re using a bag). I’ll send you my supply list!

I got my SPC in October but started the process in May. I was advised by 2 urologists not to do it because “my bladder was in “perfect working order”. I ended up going back to my first urologist and had a piece of paper full of a list of reasons why it was beneficial to my health and well-being and after that she didn’t really argue and ended up…[Read more]

Gas is a totally different drug and your body will respond very differently. I don’t do well with gas either!

So easy! I think I’ve had it twice but the one I was old enough to remember (SPC in October) felt just like a regular surgery but I didn’t go to sleep scared to death of complications. I don’t remember a thing from the second they gave me drugs in pre-op to when I woke up. It was certainly easier to wake up from and I had zero complications. Also,…[Read more]

I’ve had it 3 months. I used to have a G-tube that I hated as well and my SPC is waaaaay less annoying! The surgery was seriously so easy as I only did twilight. It’s worth everything because of how much better I feel.

Hi DeAnn! I LOVE my SPC! I’m happy to discuss but it’s way too much for a post. If you have specific questions or want to meet, I’m happy to!

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!