Brianna Albers

Happy December! My latest column is about disease progression. I often feel like my SMA is getting worse, only to realize it’s just menstrual fatigue. Still freaks me out every time, though!

How do you cope with SMA progression?

I think it’s safe to say we’re all disappointed by the holidays this year, right? My latest column covers exactly that.

How are y’all dealing with the holidays this year?

Happy Friday!

Since we’re nearing the end of 2020 (thank God, am I right), I wanted to check in about SMA My Way. I’m one of the contributors to this site. What do you like? Is there anything you don’t like? What do you want to see more of? I’d love any feedback you might have!

Happy Tuesday! In my latest column, I talk about sleep, Rebecca Solnit, and hope. (Clearly, I have a range.) Some late-night musings prompted me to think about cures and the magic of the word maybe.

How do you feel about cures?

Anyone doing Friendsgiving this year? I know COVID has thrown a wrench in things, but I’m planning on having a few friends over (masked and socially distanced, of course). It’ll be nice to pretend like things are normal, if only for a few hours.

Ever have those days where it feels like everything that could go wrong does, in fact, go wrong? I’m right there with you. My latest column is about that old saying, “When it rains, it pours.”

How are you holding up these days?

I met with a genetic counselor last week, who said that I needed to get retested for SMA. They found the results of my genetic test from 1996, but need to know how many SMN2 copies I have. I’ll let you know when I hear back about the results!

Have you ever taken a DNA test for SMN2 copies?

Happy November!

I know we’re 100% anxious about the election right now, but in yesterday’s column, I address what happens after everything is said and done. I even use the musical “Hadestown” to make my point. (Did you think I was going to reference “Hamilton”?!)

Who are you more like, Orpheus or Eurydice?

So my cat just got spayed and is already revolting against the cone. I’m a little worried — okay, a lot — about caring for her for the next two weeks. I can’t physically keep her from pulling the cone off.

Any ideas?

Happy Tuesday! My latest column is based on a quote I recently heard: “What if the first home we have to return to is our body?” It got me thinking about bodies and how we can better love our disabled bodies.

Do you consider your body to be your “home”? Do you think about body positivity and acceptance?

I heard from my contact the other day — Numotion technically can’t send appeal letters on my behalf, for some reason, so they faxed it straight to my insurance. Fingers crossed!

For those of you who have a JACO, was your appeal denied?

Happy Tuesday! My latest column is about my JACO denial. Numotion is appealing the decision, so the fight isn’t over yet, but I wanted to write about “medically unnecessary” devices. Ooh, it makes me so angry!!

How do you feel about “medically unnecessary” DME devices?

So I’ve been thinking a lot about the future and what would happen to me if something were to happen to my parents. I would like to prepare for that, just in case, but I have NO idea how to go about it. My mom has handled pretty much everything up till now, but she’s set to retire in a few years. I would really like to start transitioning care in…[Read more]