5.11.22 Serenity Now

Friday was clinic day and it was a marathon. Mah and I left Hico at 7AM and got back at 5PM. Not how I’d prefer to spend a Friday but we’re going to discuss how to approach the day from a different perspective.

Instead of complaining about a 6AM alarm, I’m choosing to celebrate that I was in bed early Friday night. Rather than focusing on the 4 hours of travel time, let’s acknowledge the fact that Mah got us there and back safely, without getting lost, and we got to have Whataburger breakfast. See where I’m going with this?

On March 30th I took my first dose of a trial drug called Pridopidine. Thanks to the Expanded Access Program, this drug has proved to be safe and have some efficacy in ALS so I get to take it for a year through compassionate use. I’m not noticing any changes or side effects, and with a lot of things ALS related no news is good news. In keeping with the sunshiny theme of this post, instead of venting my frustration over a lengthy trial visit followed by a lengthy clinic visit I’m simply thankful for the opportunity to participate and contribute to research.

Attending clinic during ALS Awareness Month is invigorating. I’ll be the first to tell you how emotionally taxing 31 consecutive days of awareness driven activities can be, but getting to meet with my care team and other families fighting alongside me gives that energy a literal fill-up. I didn’t have clinic in November or February so it was good to get back to normal and masks were optional so it felt normal, too. Next clinic is in August and I’m already looking forward to it. We changed respiratory companies so my breathing numbers were different but the therapist said in the two clinics since they started that everyone’s numbers were impacted. Many things can cause these differences, so I’m not worried at this time.

Unfortunately, I do have my first obvious physical decline in a long time. Progression is a weird topic and has no clear answer. I haven’t had an obvious setback in a while, so that’s something to be thankful for. What I mean by obvious is not that it’s something you would notice but rather that I can pinpoint when the decline occurred. ALS is weird, y’all. One day I ate breakfast just like every other day and by lunch the tremor in my right wrist was so significant I had trouble eating. Sometimes these annoying setbacks can be fixed with rest, more water, less alcohol, better sleep, etc. Just like when my thumb started to curl, this fun party trick hasn’t gone away with good behavior. Silver lining? I’m not just the pretty girl in a wheelchair anymore. Now I’m the pretty girl in the chair being fed by the person beside me.

So after an exhausting day, the icing on the cake of my crazy life was waiting in the mailbox. Brent Morrow is one of those insane people that is competing in an Ironman race. He asked me for a SunnyStrong flag for the finish and boy did I deliver. This 8’x5′ beauty is heading to Tulsa next weekend with him and can double as a tent if necessary. I haven’t stopped laughing about this lack of common sense on my part and Brent’s just happy it’s smaller than the flags at the car dealership.

I hope y’all have the opportunity to rethink a trying situation or at the very least be able to laugh at yourself on the other side.

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