Brianna Albers

So, after literal years of school, I’m weeks away from graduating with my M.A. I’m so relieved and excited to be done, but also bummed that it ended up being during quarantine. I’m not all that social, to begin with, but I was looking forward to celebrating!

Since I’m stuck at home for who knows how long with my boomer parents, I thought…[Read more]

Nothing feels normal these days, but I did receive some SMA My Way proofs the other day, including a video I recorded and some of the articles I’ve written. It was a much-needed reminder of the past, or the future, or a time with no social distancing or flattening the curve. I’m settling in for the long haul, but it’s nice to know that certa…[Read more]

I was all excited to get my suprapubic catheter… and then Minnesota got its first presumptive coronavirus case. Like most of y’all, I’m on lockdown, which means I’ve postponed the procedure until further notice.

Right now, I’m mostly just trying to keep my anxiety under control. My dad is able to work from home, so I don’t have any PCAs co…[Read more]

This time next week, I’ll have a suprapubic catheter, and be able to hydrate as much as I dang well please.

I’m a little nervous. I haven’t had a procedure since my G-tube placement, which was during my freshman year of high school. But it’s an easy surgery, and I’m not going completely under, so I’m trying not to freak out. Thankfully,…[Read more]

I never thought I’d say this, but I’m actually looking forward to my urology appointment on Tuesday! I’m hoping to get a suprapubic catheter (SPC), which — if all goes according to plan — would completely transform my toileting situation. Very few people have heard of SPCs, so I’m a little nervous, but I’ll let you guys know how it goes.…[Read more]

Hi everyone! For Rare Disease Day, I wrote about one of my favorite stories. Long story short, my service dog accidentally pulled my G-tube out. We had to schedule a gastro procedure to put it back, but anesthesia issues — of course — meant that, instead of knocking me out, I had to rely completely on laughing gas. Unsurprisingly, I didn’t do mu…[Read more]

Kevin sent me this article about AbleGamers’ new Xbox controller, and it made me so happy. I’ve been in a bit of a gaming slump lately. One of my best friends and I are playing “Star Wars Jedi: Fallen Order” (or, more accurately, she plays and I watch), which is great, but I’m honestly bummed that I can’t play it myself. I’m dying for a n…[Read more]

Thought I’d let you guys know about a cool opportunity for adults with SMA! Cure SMA has offered support packages for newly-diagnosed patients and has recently started offering support packages to adults as well. I recently received my package and was impressed with how slick the process was. 

The support package includes, among other th…[Read more]

Hey, all! Happy Friday!

I wanted to share this really neat opportunity with y’all. Shane and Hannah recently found out that a pilot for NBC is currently in development. The pilot is about a parent-child duo. The child is around 9 years old and has SMA. The writer has a child with SMA and is hoping to cast an actual disabled actor — a hug…[Read more]

I’m on an antibiotic for a possible sinus infection (yay), but I also took a Sudafed today, just because the pressure was starting to get to me. I was telling my PCA about the side effects of Sudafed that I experience, like fatigue, nausea, and cold sweats. She mentioned the possibility of me metabolizing it differently because I’m taking the med…[Read more]

Hi, all! In my latest column, I talk about my caregivers and how they’ve really become my second family. My very first PCA, Katelyn, has resumed working for us after several years, which has been great. It took a while to get used to it, but we’re quickly settling into a groove. 

My other PCA, Danielle, recently gave birth to a beautiful…[Read more]

The recent thread on SPCs has me thinking about getting one! But I’ll be honest: surgery makes me really nervous. Like, really. My spinal fusion was pretty traumatic, to the point where I tense up whenever surgery is mentioned. Like right now.

But apparently twilight anesthesia circumvents all the issues surrounding surgery. I had a not s…[Read more]