Friday, May 16, 2025 - Day 276

Friday, May 16, 2025

Good Morning, it’s FRIDAY!!!

📣 LIVE EVENT ANNOUNCEMENT 🌻 Season’s Sunflower Hour — Special ALS Episode.

In just 4 days, we’ve got something real to share. 🗓 Tuesday, May 20th
🕖 7:00 PM CST
📍 LIVE on YouTube

Join me and the family for a candid conversation about life with ALS — or as we’ve come to call it, that shitty disease.We’ll talk about the hard stuff, the funny moments, and even those questions people haven’t had the nerve to ask out loud.

💬 Got questions? Bring them.
🎥 Tune in live, interact in real time, and be part of the story. 
🔗 Click here to watch on YouTube —————————————————————

Let’s Talk About Mobility

Mobility is the name of the game right now—and let’s just say, I’m not exactly winning. My legs have been slowly checking out, and communication is right behind them on the leaderboard of frustrations. But today’s post is all about getting from point A to point B without finding myself spayed on the floor.

I’ve started relying more and more on the tools designed to help folks like me stay as independent as possible. Whether it’s getting outside, getting upstairs, or just getting across the room, on my own as long as possible.

The idea is simple: keep Cindy from having to play full-time jungle gym. She’s already carrying the weight of running our household, so the more I can manage on my own, the better. I like that she can run errands without wondering if she’ll come back to find me upside-down in a laundry basket. (She does worry, of course. I’m trying not to give her reasons. Promise! 🤞)

So here’s my running list of mobility aides—some I’ve already got, some are on standby, and a few are in my future. With thanks to the ALS Clinic, Medicare, the amazing folks at SCVN, and of course, Alex.

🚶 The Early Days

  1. Canes and Trekking Poles
My entry-level tools. Stabilizers to help me stay upright. Fun fact: I was using them incorrectly until PT set me straight. Shout-out to Alex for making me a custom cane—equal parts functional, badass, and defensive weapon.
  2. AFO (Ankle Foot Orthosis)
My right foot drops when I walk, so this keeps me from tripping over it. Left foot version is in the works. Simple, effective, and reduces fall risk.
  3. Stair Handrails
Legs alone don’t cut it on stairs anymore, so I’m recruiting my arms. With rails on both sides, I can still make it up and down on my own steam.

🚶‍♂️ Getting Serious

  1. Walker
A big upgrade in the balance department. When a cane’s not enough, the walker keeps me steady using both arms. One is standing by for whenever I need it.
  2. Lightweight Power Wheelchair
Mainly for outdoor use—walks with Bear, soaking up summer. Handles lawn… barely. Good for short trips.
  3. Power Scooter
My off-road Cadillac. Better wheels, longer range, more speed, and can carry more gear. Ideal for more rugged outings.
  4. Stairlift
When my legs officially tap out on stairs, this keeps me mobile inside the house—so long as I can still sit and transfer.

♿ Transitioning

  1. Manual Wheelchair
Once I can’t walk upstairs at all, this becomes my go-to second floor vehicle—someone just needs to push.
  2. Liftkar
A battery-powered stair climber for when the stairlift no longer works for me. Requires Cindy to help. We haven’t reached that stage yet, but it’s in the wings.
  3. Shower Wheelchair
When I can’t transfer to a shower seat anymore, this chair rolls me in, and I do the rest. It means someone will need to help me in and out—but it lets me keep some independence with hygiene.

🛠 The Big Guns

  1. Heavy-Duty Power Wheelchair (I was fitted yesterday for this chair)
The final boss of mobility gear. It does almost everything except climb stairs or fold itself into a closet.
    • 425 pounds of pure muscle
    • 20-mile range, 6 mph max speed
    • Off-road capable
    • Elevates me to conversational or shelf-reaching height
    • Tilts and reclines to relieve pressure
    • Can double as a napping spot (though not recommended—unless desperate)
  2. Accessible Van
When I can’t transfer at all and the heavy-duty chair is my only means of transport, the van becomes essential. It’ll let me get to appointments or just out into the world again. Think of it as my independence-on-wheels.

❤️ Just Because

  1. 1968 Convertible Red Mustang
No medical justification here. Just old-fashion fun!!. Summer breeze, radio cranked, top down. Because if you’re going to ride off into the sunset, you may as well do it in style. Requires car and driver.

Have a great Friday.

Love you guys! ❤️