Living with ALS: Kate's story

Kate was busy planning her wedding when she was diagnosed with amyotrophic lateral sclerosis (ALS), one week before her 33rd birthday. With their plans for the future turned upside down, she and her husband are trying to make their lives feel as normal as possible, as she focuses on her new purpose: being an advocate for ALS. 


Kevin: "I Kevin, take you Katherine, to be my wife."

Kate: "I Katherine, take you Kevin, to be my husband."

Kevin: "In good times and in bad. In sickness and in health."

Kate: "I will love you and honor you."

Kevin: "all the days of my life."

Kate: I was diagnosed a week before my 33rd birthday on April 9th. I was told it was ALS.

And at that point, Kevin and I had become engaged and had set a date for our wedding.

Kevin: It was devastating, especially looking forward to our wedding. Talking about potentially having kids, all of that vision flashed before my eyes. I think that was one of the hardest things.  

Kate: All I wanted was that fairytale adventure of planning and being a bridezilla, making everything perfect the way you want. So, it really shook me to the core in a way that, okay, maybe table linens aren’t that important. And it really brought it back to me and Kevin and those who love us being there to support us.

Kevin: Going forward, it's more of how do we adapt to the changes in Kate's life?

Kate: I can't say that we're completely finished grieving yet. Luckily, three years ago, we found this home, and it was the American dream, the white picket fence...

And we were able to modify it and make it accessible. It will work for us going forward, but it's also comfortable, and I think having it feel normal feels good, and gives us a little respite from ALS, in pockets.

I have become quite the advocate, and oftentimes I'm busier now than I was prior to diagnosis. I really enjoy being an advocate for ALS, so if I can speak up and help make a difference, then that's my purpose for now.

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