DeAnn R

On my never ending quest to find a formula that agrees with me I’m finally giving Real Food Blends a try. My sample shipment just arrived. Usually I do gravity feeds. we’ll have to play around with the consistency as it’s too thick to go through the gravity bag without watering it down. How do those of you on it take it? While I’m giving it a…[Read more]

Last week I asked where you are at in your SMA treatment journey. I got a lot of responses and the answers varied between those who have been on treatment for a while and those just starting out. One question it brought up for me is the effectiveness of the treatments. In this video I talk about some of the factors…[Read more]

For those of us with SMA our wardrobes create added challenges. As I’m sitting here in mismatched socks (not intentional) this question popped into my mind. Would you rather have mismatched socks or a wrinkled shirt? I’m going with mismatched socks. Isn’t that a trend these days anyway? At least I could play it off as intentional.

Typically I try not to dwell on the news. Especially when it involves variants with extra spikes. What? Anyway something I heard has been keeping me up at night. So, I thought I’d get your take on it. Although I’m a supporter of vaccines (they’ve saved my life a time or two,) I feel it’s a to each their own kind of thing. Of course I’d be…[Read more]

For the life of me I couldn’t figure out why Alexa wasn’t turning my bathroom light on and off. Despite responding, “Okay,” nothing happened. Luckily I have alternative means, but it’s still annoying. After days of trying to figure it out totally by accident I said, “Alexa, turn off the bathroom,” when I meant to say “on.” The lights turned on!…[Read more]

I’m just wondering, where is everyone at in their treatment journey? Although I’m not entirely thrilled with Evrysdi I’m sticking with it for now. Imodium is managing my stomach issues for the most part. Despite feeling Spinraza works better the difference isn’t enough to justify switching back. At least not for me. For the moment.

A recent social media post got under my skin. In it, there’s a link to a story regarding the Miami International Airport installing wheelchair charging stations. Initially, I thought this is a step in the right direction. Now I’m thinking it’s a way to gloss over the real issue of not being able to stay in our chairs for a flight. In the…[Read more]

Hey everyone! I’m excited for this one. Although it took a lot of effort everything has come together and I finally have my Jaco Robotic Arm!!! In this video not only do I show you what the installation process is like, I also show you what I can do with it. You’ll be able to see the moment it arrived at my d…[Read more]

As with many of you I tend to be an overachiever. Maybe it’s because I like to keep busy. However, I think a lot of it has to do with proving I can hold my own regardless of my disability. It’s a lot though. Really I don’t think people realize how much I do with what little physical function I actually have. So, when I get comments regarding…[Read more]

We end the month with a call for advocacy. Ben Mattlin’s story talks about how far we’ve come in the 31 years since the ADA was passed. He also goes on to say we have much more work to do. SMA awareness month is coming to a close, but let’s not forget that SMA doesn’t go away when the month is over. Each day we have the opportunity to enhance…[Read more]