A New Layer of Relief: My First Week on Vaylev

Tyaisha Dillon
Sep 6
3 min read

I’ve been living with Parkinson’s for 26 years.

That’s 26 years of being misdiagnosed, learning how to fight for my voice, living with pain most people never see, and holding onto hope that something could make a real difference. For the last six years, that “something” was Deep Brain Stimulation (DBS). It steadied the ground beneath me when everything else felt shaky. It gave me back the ability to lead, to parent, and to feel a little more like myself again.

But Parkinson’s doesn’t sit still. It changes. And lately, so have I.

The off periods — those times when my meds wear off too soon and the symptoms come roaring back — were getting harder. My body was shifting again, and I could feel myself needing a new path forward.

That’s when I brought up Vaylev with my care team.

I had already been reading about it. I knew it might be worth a try. After long talks about my symptoms, goals, and what I’d already done, we agreed — this was the time to step into something new.

The Night Before

I stopped Rytary at 9 PM the night before my infusion. By the time I walked into the clinic the next morning, my right shoulder was locked in painful dystonia. It was throbbing, stiff, and impossible to ignore.

It wasn’t just pain. It was my body telling me, “This isn’t working anymore.”

Starting Vaylev

The infusion began at 9 AM.

At first, I didn’t expect much. But by midday, I felt the smallest shift. My shoulder loosened. The sharp pain softened. I could breathe again.

My legs were still heavy — like dragging through mud — but that release in my upper body was enough to give me a little momentum.

The Days After

The first couple of days? I barely stayed awake. My body just wanted to sleep.

And honestly, I was frustrated. I didn’t want to feel that drained. But then I remembered — this isn’t the first time my healing has started with rest. Sometimes the bravest thing you can do is stop pushing and let your body reset.

So I let it.

One Week Later: A New Rhythm

A week in, here’s where I am:

My dystonia is easing
My movements feel smoother
My thinking is clearer
My energy is slowly coming back

It’s not magic. But it’s progress. And progress matters.

Vaylev is building on the foundation DBS gave me — not replacing it, but helping me take the next step forward.

Why I’m Sharing This

Because this journey — 25 years of living with Parkinson’s — has taught me something: there’s no single “perfect” answer. There’s only the willingness to keep asking, keep adjusting, keep trying.

When I asked about Vaylev, it wasn’t because I was giving up on what worked before. It was because I refuse to stop believing that something better is still possible.

So if you’re going through off periods, battling pain that sneaks up on you, or just feeling like your current plan isn’t enough — hear me when I say this:

👉 You’re not alone.

👉 You’re not failing.

👉 Your needs are changing, and that’s okay.

Talk to your care team. Stay curious. Rest when you need to. And when you feel ready, ask about options like Vaylev.

Because forward is still possible. Always.

Rooted in Resilience 🌱

If there’s one thing Parkinson’s has taught me, it’s that resilience isn’t about pushing harder — it’s about learning when to pause, breathe, and reset.

That’s why I created something personal to share with you: Rooted in Resilience: 15 Minutes to Wellness

It’s a short, simple guide you can use right away to ground yourself and reclaim a sense of balance, even on the hardest days.

➡️ Download your free copy here

And if you’re curious about Vaylev, you can learn more here.

Because forward isn’t about finding one big solution. It’s about building small moments of strength, rest, and resilience — and letting them carry you into the next step.