Our frazzled reality

It seems like yesterday that we received confirmation of THAT diagnosis ... MSA.

It feels like just yesterday we got that diagnosis...
MSA.
The diagnosis that turned our world even more upside down than Parkinson’s did.

I’ll never forget it — sitting there, hearing our faithful physician say,
"Okay, so...I don't think it's Parkinson’s disease. It’s one of the diseases under the Parkinsonism umbrella..."
Then came the words that hit harder than we realized at the time:
"It’s not good. But I’ll be here with you every step of the way."

Enter Multiple System Atrophy — the "rogue cousin" of Parkinson’s that now runs the show in our daily life.

If you don't know, MSA is a degenerative neurological disease that messes with your autonomic body functions — you know, the really important ones you don't get to control like breathing (awesome), blood pressure (even better), and muscle control (and yep, here’s where the ride really gets bumpy).

There’s no cure.
You don’t beat it.
You manage the symptoms the best you can, until you can’t.

We’ve been walking this journey for years now. And when I say “we,” I get it — I’m not the one walking in my love’s shoes. But it’s a path you walk together whether you like it or not.

The first gut punch was syncope — the passing out/fainting spells.
If I had a dollar for every time he fell into a wall, through a door, on top of me (lucky me), or onto the control desk at work (hello, terrifying phone call from security followed by an ambulance ride), I’d be living large.
The kids even became pros at spotting the signs that dad was about to DFO — that’s “Done Fell Out” for those of you not fluent in family code.

Doctors threw around terms like "vasovagal" and "neurocardiogenic."
We did tilt-table tests, CT scans, medication changes, and kept blood pressure logs that could wrap around the house.

Then came the loss of smell.
We literally spent days sticking the nastiest stuff we could find under his nose:
"You can’t smell this? UGH!"
It was actually kind of hilarious — picking the most foul-smelling stuff, shoving it under his nose, and him just blinking at us like, "Nope, nothing."
Every once in a while he’d catch a whiff, and we’d react like he took his first steps all over again.
And then — just like that — poof, gone.

Next came the changes in voice, which you honestly had to laugh at sometimes.
One minute, he’s got the high-pitched squeak of a little old lady; the next, the deep, raspy tone of a 1-900 operator.
Every time I call, I wonder who is going to answer.
We always joke it reminds us of his sweet mom — and honestly, it brings back memories that are pure gold.

Then the vision loss hit.
"Hon, I literally can't see out of my left eye — it's dark and fuzzy."
Cue the ophthalmologist appointment, scans, and...nothing they could fix.
Turns out the blood vessels just decided to take an early retirement, most likely thanks to MSA.

And it keeps coming.
Not slow, not steady — just BAM.
Balance issues.
Speech that sounds like you’ve had a few too many.
Trouble eating and swallowing.
Cognitive changes.
And let’s just say ... a whole list of other fun side effects that no self-respecting caregiver/wife talks about at the dinner table.

Every day is a new adventure.
Sometimes we giggle.
Sometimes we cry.
Sometimes we do both at the same time.

It’s exhausting.
It’s heartbreaking.
It’s also filled with more strength and grace than most people will ever see.

Because the truth is — sometimes you don’t realize you’re drowning when you’re busy being everyone else’s anchor.
(Thank you @joyofmom for that perfect reminder.)

If you’re walking this road too ... just know you’re not alone.
We're out here — laughing, crying, anchoring, and living one day, one moment, one adventure at a time.