Taking action

SMA is like a string of lights. When one bulb goes out, you don’t really notice. But over time, as more and more bulbs go out, all of a sudden, you’re in the dark.

So I was noticing that I wasn’t as strong as I used to be. I wasn’t able to walk long distances. I was unable to get myself off the floor. I was unable to walk up and down the stairs on my own.

I was always constantly getting weaker. And so, that is very difficult. It’s very difficult. I remember probably the biggest thing that lasts in my mind is there was a time when I was still able to feed myself, and I remember going to work. I would literally take myself to work on public transportation 2 hours each way. And during lunch, someone would just help me throw something in the microwave, and I would be able to feed myself. And one day, I couldn’t. I just couldn’t get the fork to my mouth. And so, after about a week of struggling trying to feed myself still, I had to realize that I just couldn’t do it anymore. And that was probably the hardest thing for me to accept because it was that last ability that I’m no longer able to do.

SMA has been a slow progression. It’s not really something that I notice day to day. But when I think back, like when I was first a teacher, I could use an overhead projector, and now I can’t. And so, it’s obvious that it has progressed.

Imagine there’s a hundred things you do every day from the minute you get up in the morning. You stand up, you walk to the bathroom, you kiss your wife, you answer the phone, you hug your kids. There’s some more than a hundred things. But imagine there’s a hundred things that you do. And with this disease, those go away. Forty years ago, we didn’t know what it was. We didn’t have any treatment. But now, today, today there’s treatment.

SMA does not offer a lot of choices in my life. I had to basically do what it told me to do. And for once, now I have a choice, and my choice is to seek treatment and to slow the progression of a disease that is going to continue whether I want it to or not.

I like options. Options are great, right? We live in a society where there’s always an option. And I’m just grateful that there is actually an option, not just one, but many because for so long, the SMA community hasn’t had a treatment and a possibility that something will help us, help us maintain our strengths.

I think choice is always important in any circumstance, but most certainly when it comes to your body. And being able to make a choice of how you want to approach a situation and how you wanna approach SMA is critical.

My goal is to continue and maintain some of the things that I'm able to do on my own. I wanna know that I’m doing everything I can to maintain motor function so that I can be there for my family and my students, and my husband.

In talking to other people about Evrysdi, I love telling them that Evrysdi for me is about taking action, and I get to take action every single day by taking Evrysdi.

What motivated me to start taking treatment with Evrysdi was my wife, really, honestly. She is the one that told me how important it was for me to have a full life to be with her, how important it was for me to be there for her. And it wasn’t until then that I realized that I’m not just living my life for me anymore. And so, I did seek treatment. I'm not one looking forward to retirement.

I wanna be able to do what I’m doing with the voiceover work, and I wanna be able to do that for another 10, 15 years. The future for me should look just like it does today, and that would be wonderful.

I would tell anyone I met with SMA to seek treatment. I can’t begin to describe how it feels every morning when I get to take that medication and to know that I am fighting a disease that has been fighting me. And I get to make that choice, and I would want anyone to make that choice as well.

Treatment matters.