Tag Archives: Multiple System Atrophy

Wholly Unprepared

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2025 was the most challenging year of my life and it wasn’t even close. And 2024 was the second most difficult.

Being educated, white, straight, and male in the wealthiest country the world has known made the other sixty one largely a breeze. Especially when you add a successful hardworking dad, an extremely loving mother, and an extremely loving wife into that mix. I was pedaling downhill with the wind until I wasn’t.

Occasionally, until Lynn was stricken with Multiple System Atrophy, I found my privilege so extensive as to be disorienting, wondering, “Why me?”

Was the cosmos playing catch up? Not even Steph Curry can make 63 straight free throws. The odds had to be against me running the table.

And of course, 2024 and 2025 were way, way worse for Lynn. I was just collateral damage.

I spent nearly all day, every day caring for Lynn during the first eight months of 2025. Never travelled anywhere, rarely saw anyone else. I knew that type of intense, nonstop closeness was really bad for our relationship. For us, absence, whether for a few hours, days, or weeks, always, always, made our heart(s) grow fuller and fonder.

I felt like I was suffocating in the house doing the best I could to stay on top of Lynn’s multiplying symptoms. The few times I lost it and told her I was worried about my mental and physical well-being, she said I just needed to figure out how to get away for a weekend. Which was hugely deflating.

I understood that to mean she was way too overwhelmed by MSA to appreciate how far I’d slipped from my normal contented, happy, healthy self. I told her and A and J that what I needed was months with no responsibility to rest, recover, and heal. And I knew that was a pipe dream, so I kept grinding until I couldn’t anymore. Which turned out to be late summer, at which point A and J realized the seriousness of the situation and we pivoted to finding an adult family home, which of course, initially at least, added to the family’s trauma.

Like a burglar inside a vacant second home, MSA took its time taking everything from Lynn and me. Over a few years we lost the ability to be active in nature together, to travel, to go out to dinner, to be physically intimate, for Lynn to do anything for me, to work together to accomplish anything, to communicate, to know something of what the other person was thinking and feeling. And to add insult to injury, any ability to plan for a shared future.

Intensely sad, painful, compounding losses, but spread out over enough time I was able to fool myself that I’d be prepared enough for Lynn’s inevitable death that I would be alright and somehow piece together a new life.

But strangely, as it turns out, I was wholly unprepared for the most obvious thing of all, the permanence of the loss. I was deluded to think a break was possible. Now that the movie is over, forever, it’s jarring. To say the least.

It’s devastating to think that I’m never getting back any of the amazing, life-fulfilling things that were lost. Ever.

Silver Linings

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If I press pause long enough to reflect on my wife’s Multiple Systems Atrophy, and the toll it is taking on her and us, it’s almost too much to bear. So I tend not to. Yes, you’re right, of course it will catch up with me eventually. Right now, cue the cliche, it’s one task and one day at a time.

Even though I resist completely coming to a stop, I do sporadically slow down enough to take account of ways that I’ve changed as a result of our travails.

There are some silver linings.

For example, I have become a much better cook. Am I a good cook? The Gal Pal says I am, but I don’t know. All I know is I’m a lot more confident in the kitchen. My repertoire has expanded and we eat healthily.

I’ve also adopted more of a contractor’s mindset towards life. After we bought our current crib, we contracted with our builder to make some accommodations for the Good Wife. We threw in a cut-out for a t.v. and a bath tub for good measure. As a result, I got to know the builder and I was blown away by how calmly he went about problem solving. I was always afraid to bring up a problem, but he anticipated them, and rolled with them, immediately shifting to solutions. In fact, from watching and working with him, I realized that all contracting consists of is identifying problems, prioritizing them, and solving them. Full stop. Without drama or fanfare.

That’s not a bad approach to life. Being mechanically challenged, I’ve almost always freaked out whenever something breaks or doesn’t work as it should. Now, not so much. I think to myself. “This can be fixed. How can I fix it?”

And just as I’ve grown more confident in the kitchen, my home project bonafides have shot up from zero, to I don’t know, something more than zero. Just yesterday, I completed a home project that pre-MSA Ron would’ve never dreamed to attempt.

Long story short. Our Mitsubishi heat pumps came with nice digital thermostats on the second floor and mind numbingly bad remote controls on the first. By which I mean, the Japanese team that designed the user interface of the remotes should be brought before the International Court of Justice and slapped around.

So I did some research. And then bought and installed new digital thermostats on the main floor. Which entailed finding the circuit boards in each heat pump and attaching wireless dongles to the CN105 ports.

But like Rors after making birdie on 15 (shoulda been another eagle) on Sunday, I had too much momentum to stop there. Recently, I learned about apps that enable users to control heat pumps from their phones and said to myself, “Lets swing for the fence.” I know what you’re thinking. Then Ron channeled Rors on 13 and inexplicably dumped his wedge into the creek when he had the WHOLE FREAKING green as a backstop.

Not today friends. I bought second dongles only to learn I then needed to purchase splitters and then I had to connect everything to the circuit board and the dongles to the wireless network. Let’s just say when Olga came to my office this morning and said to me, “Can you turn off the heat in the kitchen, it’s too warm?” I said, “Sure, let me get my phone and PRESTO heat off.”

Felt like I hit a walk off homer. Or at least what I imagine that feels like.

DanDantheTranspoMan and Las Vegas had the odds of me succeeding on this project as the same as the Trump administration coming up with a coherent economic plan.

But sometimes miracles happen.

An Entirely Different Kind Of Marathon

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A year ago or so, when my wife’s Multiple System Atrophy (MSA) really started to take a toll on her and us, one of her close friends pulled me aside and said, “You’ve run a lot of marathons. This is going to be another one.”

It’s an apt metaphor until it isn’t. Apt in the sense that caring for my wife is daunting and it requires real endurance. And ultimately, it’s exhausting.

But when running marathons, there are markers every kilometer or mile that help you carve the total distance up into more manageable parts. “Okay, now I’m half done.” Or “Okay, now I just have to gut out a measly 10k.”

With MSA there are no markers unless you count steadily worsening mobility, steadily losing one’s voice, or steadily losing. . . pick the system. Despite my wife’s steady decline, I don’t know how to pace my caregiving, so cliché alert, it’s literally one day at a time.

Two aspects of it are especially hard.

The first is the utter selflessness required. A traditional marathon is almost entirely physical. It mostly boils down to whether you’ve put in the miles or not. In contrast, this caregiving marathon is entirely spiritual. Very simply put, the question is whether I can let go of all of my personal hopes and dreams to meet my wife’s immediate needs. All day. Every day. Over and over. And over.

I want to waste some time watching bad television, go away for the weekend, and sleep through the night uninterrupted, but I can’t do any of those things. Or much at all because there isn’t time.

We’re fortunate in that we’ve hired some help, which means I can squeeze in runs, rides, and swims, and thereby flush some of the stress. But some inevitably accumulates.

Recently, I approached a crosswalk in our nearby traffic circle at the start of a run. Not seeing me and thinking she would just roll into the circle, a driver approached the crosswalk way, way too fast and nearly clipped me. I straight-armed her bonnet and lost my shit. So much so she looked scared and immediately turned apologetic. For those scorekeeping at home, my anger was worser than her speeding. “Who have I become?” I wondered.

Which leads to the second challenge. Instead of mustering some semblance of self-compassion, which I’ve become convinced is probably the key to a good life, I continually beat myself up, concluding I’m not nearly up to the spiritual demands of providing the patient, selfless, and kind care my wife would undoubtedly provide me if the situation was reversed.

So, instead of saying to myself, “Ron, you’re doing the best you can to be as selfless as possible in very difficult circumstances.” I find myself thinking. “Because I lack the requisite spiritual depth, I’m doing a shit job caring for my wife.” Those are not constructive thoughts. But, they are mine.