Friday, February 20, 2026 – Day 546

Friday, February 20, 2026

Good morning, everyone.

Yesterday was a long one, just as expected.

We were picked up at 11:00 a.m. sharp. Our driver was cordial and immediately took over control of the power chair, insisting I not touch the joystick. I suspect a past passenger left him with trust issues.

Once locked into the van, we headed out. The moment we hit the main road, we knew it would be a rough ride. Every bump launched us into the air. When the driver casually mentioned the van had over 500,000 miles on it, I thought, I’m guessing the suspension has the same mileage.

We arrived a little rattled but ready.

First stop: vitals. They had to calculate my weight by subtracting the chair from the total. The result: 137 pounds. Down three more. I had hoped for a gain. It’s frustrating to keep losing ground.

In the exam room, pulmonary testing came next. I’ve done these breath tests many times. In the early days I could inhale and exhale forcefully for 7–10 seconds. Yesterday it was more like 2–4 seconds, without much strength behind it. I didn’t need anyone to interpret the results. I could feel them.

The rest of the clinic rotation followed: nutrition, speech, PT, OT, social work, neurology, and finally Angel Peggy.

PT wants me wearing shoes with my AFOs in the house for ankle support. I prefer shuffling around in socks, but I committed to trying transfers with the braces. That means ordering bigger shoes—my feet are swollen enough that the current ones aren’t an option.

Speech therapy is connecting me with a rep to program short phrases for easier communication. My voice continues to thin out. It’s time to adapt again.

Then came the neurologist, Dr. Wlodarski. His visits have always been brief and perfunctory. This time was different.

He talked about the limits of non-invasive ventilation. As my diaphragm weakens, the NIV won’t be able to carry the full load. The next step, medically, would be a tracheotomy.

I ruled that out from the beginning.

So what does that mean?

It means he’s writing the order to transition me from palliative care to hospice care.

In practical terms, not much changes right now. I’ll stop one ALS medication that isn’t helping. Hospice will focus on comfort as breathing becomes more difficult. The goal shifts from fighting progression to managing symptoms and preserving peace.

Still, hearing the word hospice lands heavy.

Peggy walked us through what the process looks like. It’s not a switch that flips overnight. It’s added support. It’s planning. It’s making sure I’m comfortable. She spoke calmly about things. My brain lies awake 2:00 am every night worrying —the fear of not being able to breathe, the anxiety that creeps in when the room is dark and quiet.

She answered those fears directly.

I did cry. Not from panic. Not from giving up. Just from the weight of acknowledging that we are moving closer to the final chapter. Naming it makes it real.

But it also brings clarity.

Hospice isn’t about surrender. It’s about comfort. It’s about dignity. It’s about making sure the people I love aren’t scrambling in a crisis someday. It’s about choosing how this story is handled, having some control at the end.

We hugged Peggy tightly and made our way back to the van. Locked in again at 4:30 p.m., bouncing home over every bump in the road.

A long day.

A hard word.

But also a plan.

And for now, that’s enough.

Have a fabulous Friday Love you guys!❤️