Living Beyond the Diagnosis

Living with a terminal illness like Multiple System Atrophy (MSA) is like walking with a shadow that never leaves. It’s always there, lingering just out of sight, a constant reminder of what’s to come. If you’re anything like me, you’ve probably found yourself consumed by thoughts of the end. How much time do I have left? Will it be tomorrow, next year, or longer? What will it feel like?
I’ll admit it—there are days when these questions take up more space in my mind than I care to admit. But here’s the hard truth I’ve come to understand: this kind of obsessive thinking isn’t living—it’s dying before your time.

The Trap of Rumination

It’s natural to ruminate when faced with something as overwhelming as MSA. The slow deterioration of our bodies, the loss of independence, the fear of what lies ahead—it’s enough to make anyone feel trapped in a cycle of worry.
But here’s the thing: rumination doesn’t change the outcome. It doesn’t slow the disease, ease the pain, or add a single moment to your life. What it does is rob you of the precious time you have left.
I’ve spent countless hours worrying about what my final days will look like. But for every hour I’ve spent dwelling on death, that’s an hour I didn’t spend truly living—an hour I could have spent enjoying the sunlight, laughing with my family, or finding moments of peace in the chaos.

The Cost of Worry

Worry is a thief. It sneaks in and steals your joy, your energy, and your ability to be present. For those of us with MSA, energy is already in short supply. Why give what little we have to something that doesn’t serve us?
I’ve seen how my own worry affects the people I love. My family sees the fear in my eyes, hears the tension in my voice, and feels the weight of my uncertainty. By letting my thoughts spiral, I’m not just hurting myself—I’m hurting them too.

A New Perspective

I’m not here to tell you to stop worrying altogether. That’s impossible, and honestly, not realistic. But I want to redirect my thoughts when they start to spiral. Instead of focusing on the unknown, I want to focus on what I can control:
• Moments of Joy: A conversation with a friend, a good article, or a walk outside—even if it’s short and difficult.
• Connections with Loved Ones: My family and friends are my anchor. Sharing a laugh, a meal, or even a quiet moment together is worth more than any amount of time spent worrying.
• Small Victories: Did I manage to do something today that felt impossible yesterday? That’s worth celebrating.
When I focus on these things, the fear may not disappear, but it loses its power.

A Message to Caretakers and Families

If you’re reading this as someone who loves and supports someone with MSA, know this: we need your help. Not to fix us or take away the disease, but to remind us when we’re lost in our thoughts. Gently pull us back to the present. Be patient with us when we’re overwhelmed by fear.
And most importantly, don’t let your own worry steal your time with us. We feel your anxiety, your sadness, and your stress. But what we need most from you is your love, your presence, and your hope.

Living While We Can

MSA will take a lot from us—it already has. But we still have the power to choose how we face it. We can let the fear consume us, or we can push back and claim whatever time we have left.
Every day I remind myself: I am still here. I still have today. None of us know how much time we have, but we do know this—every moment we spend worrying is a moment we can’t get back.
So let’s make a pact, you and me. Let’s stop counting the days and start living them. Let’s find joy, even in the smallest things. Let’s hold on to hope, even when it feels impossible. Because no matter how dark the shadow of MSA becomes, there is still light to be found.

Let’s live while we can.
~Coach~