Following! None I know are active.

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… 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.… 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’m in the appeal process for my JACO and have been asked to write my own appeal letter. Does anyone have one I can look over?

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?

I’d like to talk RULM. I hate this assessment (yes, I know hate is a strong word). My biggest issue with it is reach – I can perform a lot of the tasks if the item is in reach but because I’m not allowed to elevate my chair high enough, most of it isn’t in reach. After speaking with my new OT she thinks it’s unfair for adults because… Read more

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… 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!

Hi Ryan! In 2015, I traveled from Houston to CO Springs for my cousin’s wedding. The rest of my family lives in Ohio so everyone was traveling quite a distance. We all rented an amazing, mostly accessible house with a breathtaking view. It was totally worth the insane planning! I didn’t know it was the last time I’d see my grandma alive and I’m… Read more

I love this post! I think we really need to consider regenerative therapies and pay attention to Zolgensma’s effect on insurance coverage of long-term care. By regenerative therapy, I mean if you or I receive Zolgensma, our neurons and muscle fibers are already dead. How do we rebuild those to see more effects?

I also worry about Medicaid… Read more

Thanks all! I’m currently doing a smoothie with both Greek yogurt and hemp powder (can’t stand more than 1 scoop). Meat is hard because of swallowing – even when blended – and I honestly don’t care that much for it. As for shakes/bars, I do have a nutrition degree and know the junk that goes into these will make me feel awful. More protein… Read more

I have had Houston Hobby break my chair every time I’ve flown in or out. I only plan to fly in the future for something amazing (i.e., my 30th birthday U.K. extravaganza).

What are everyone’s protein goals and how do you achieve them? I know I need more but how much and how to get without a lot of meat. I am looking for low sugar options that are easy to chew and swallow.

I love my FAM!!! My facility (where I happen to work) didn’t want to do complex spines at all and still isn’t thrilled with it as there’s only 2 of us. She immediately addresses any concerns I have – i.e. new dr taking too much CSF – at my facility. She also was great about giving me directions for how to schedule, where to go, and specific… Read more

My parents were told 2 and I am 28! I DESPISE these life expectancies!

I saw a PT I really trust yesterday and she told me there’s no need as long as I’m making sure my feet are positioned correctly on my footrests.

I, too, wish I had known about this at a younger age! I am seeing a urologist for this now and hope to do an SPC with just local anesthesia.

Hi all!

My name is Rachel Markley, I am 28, a weak type II, and live in League City, TX between Houston and Galveston. I am a full-time research coordinator in the Center for Neuroregeneration at Houston Methodist Hospital. I will receive my 4th loading dose of Spinraza next Wednesday!

Happy to answer questions or just chat!