Still Standing: My Journey with MoyaMoya Disease

By Mike

I had my first stroke when I was just five years old. That’s when I found out I have MoyaMoya disease, a rare condition that causes my arteries to narrow, cutting off blood flow and leading to strokes. It’s a scary reality to live with - knowing these episodes will continue to happen and there’s very little I can do to stop them. But through it all, I’ve learned how to keep going, even when it feels like the odds are stacked against me.

I still remember that first stroke vividly. I was at a BBQ, just a regular day. I reached out to grab a plastic cup, and suddenly, the right side of my tongue went numb. The cup slipped from my hand, and before I knew it, I was being rushed to the hospital. It’s a moment that changed everything.

I’ve now had four strokes and multiple TIAs. The most recent one hit while I was sitting at home, just watching TV. I noticed a strange numbness creeping in, first on my left side, then the entire right side of my body, from my face all the way down to my feet. Once again, I found myself back in the hospital. My blood pressure had spiked to 194. That was a frightening moment, but I knew I had to face it head-on.

Since my first stroke, I’ve been permanently impacted on my right side, and the most recent episode has made things even more difficult. Right now, I’m going through physical, occupational, and speech therapy, working every day to regain what I’ve lost. It’s not easy, but I stay faithful. I believe that I’ll be healed again. I believe I’ll be able to use my right hand again. I haven’t lost hope.

Some of my biggest challenges right now are basic things - like eating. The numbness in my lips, mouth, and chin makes it hard to chew and swallow. Using my right hand is another daily battle. But even in the hardest moments, I remind myself: progress is still progress, no matter how small.

To anyone reading this, especially young people facing challenges of their own, my advice is simple: never give up. Just breathe. Keep calm. Keep going. Every day might not be perfect, but every day is a new chance. Things do get better, bit by bit.

One thing that’s really helped me in my recovery is keeping my mind active. I love mental challenges; word searches, puzzles, brain games on Lumosity, and doing daily tongue and mouth exercises. I also enjoy reading and looking at pictures to help me remember important moments and people. These little things keep me grounded, and they remind me of who I am beyond this disease.

Even through all of this, one thing I’m most proud of is being a musician. I’ve toured, I’ve performed, and I’ve created all while battling these invisible (and sometimes very visible) struggles. Music has always been my escape, my therapy, and my triumph. It reminds me that bad times are not the end, they’re chapters in a much bigger story.

So here I am, still healing, still pushing forward, still standing. And if you’re reading this and walking through your own storm, just know you’re not alone. We might not be able to control everything, but we can control how we fight. And I choose to fight with faith, with love, and with hope.

If this story resonates with you and you have question, please call the team on StrokeLine 1800 787 653