Sunday, February 16, 2025

Sunday, February 23, 2025

Good morning, friends and family!

Let’s talk about what came out of my ALS Clinic visit on Thursday. I’ve already shared the emotional side, but I owe you the clinical details—though, let’s be honest, there’s plenty of emotion tied into each discipline I saw throughout the day.

Knock knock… it’s pulmonary, the first of many visitors through the revolving door of my exam room. Time to breathe into a device that measures my lung strength—both inhaling and exhaling. See the photo for a perfect representation of how that went. The results? I’ve lost a little ground since October, but overall, my lungs are holding up. However, my cough is weak, and I can’t clear my airway effectively. A small concern for pulmonary, apparently, as I won’t be getting a cough-assist device until April. They classified me as “routine.” Personally, I don’t find anything routine about these choking experiences—just ask Cindy.

Knock knock… it’s my care coordinator. I talked about her on Friday. She’s my angel.

Knock knock… it’s nutrition, and this time, two people enter. We discuss my weight and whether I’m having trouble swallowing. I think they’re trying to be funny. Officially, no serious swallowing issues yet—though I have had a few close calls with choking myself half to death. The big question: “How much weight have you lost?” My answer: “Seven pounds since October, about 22 since June.” Not great. I’m practically swimming in my clothes. Looks like a Costco trip is in order! The primary topic is protein intake, and I finally surrender to the idea of drinking protein shakes. Cindy promises to turn them into chocolate shakes, so now I’m officially on board.

Knock knock… it’s neurology. Time to test my overall strength, head to toe. Three people enter—a neurologist, a PA, and an unknown third. The PA leads the exam, but every so often, the neurologist steps in when he doesn’t quite trust the PA’s assessment. So, I get to do some tests twice—lucky me. Of course, they aren’t here to cure me, just to ensure they’re accurately charting my ALS progression.

Knock knock… it’s OT, and in walks Violet (who I saw last time) with a colleague. I have to admit, it’s a little jarring to take exercise advice from someone who, let’s just say, doesn’t look like they frequent the gym. But I keep my thoughts to myself and remain polite—she means well, even if she’s not exactly a walking advertisement for physical fitness. We go through upper-body exercises, repeating much of what I just did with neurology. Conclusion: no significant changes since October.

Knock knock… it’s speech therapy. Two people enter, and it’s déjà vu from October. They watch me drink, eat, and swallow, and we discuss strategies to prevent choking. We also talk about voice and text banking. I let them know I’ve started the process (thanks to Geoff and Kristen) and that I’m working with Team Gleason on an ongoing plan.

Knock knock… it’s the social worker. Except… he wasn’t supposed to be here today. Apparently, someone forgot to cancel his visit. As he sits down, I preempt his first question: “I feel safe at home, but I’m not sure how Cindy feels.” Thankfully, he doesn’t press the issue. He asks the same questions as last time and offers group therapy sessions again. I give him the same answer: sitting in a room with other ALS patients would just depress me. He continues pitching the benefits, but I shut it down with, “Don’t kill the bird that’s still tweeting.” He remains unfazed and keeps talking until his time is up.

Knock knock… it’s PT. Three people enter, and now it’s time to focus on my lower body—the part of me ALS has hit hardest. I repeat many of the neurology tests but only for my legs. Their conclusion? Slightly weaker than October. I’m not sure I agree, but it doesn’t really matter—it’s not like they’re going to change anything. They examine the insert for my right shoe, which is supposed to help with my foot slap. Turns out I need wider shoes for it to fit properly. Simple fix. We take a walk down the hallway to assess my balance and cane use. They point out that I’m using the cane incorrectly. Another simple fix—just need a little practice.

And that, my friends, was my day. Long, but overall, the doctors and staff seem to think my ALS progression is relatively unchanged since October. While I feel like it’s moving fast, they see things differently. So, what do I know?

Since Thursday, I’ve added about a dozen appointments to my medical calendar. I will go willingly, because I want to slow this disease down anyway possible and be in the best shape possible for the fall wedding.

Have a great Sunday.

Love you guys!❤️