Staying motivated while living with aphasia: an interview with Steve Parnell

“I wish more people knew that with aphasia, you can see everything in your brain you want to say–it just doesn’t always want to come to your mouth.”

On the evening of January 31, 2018, Steve Parnell was at his computer finalizing a presentation for a work trip to Hawaii when he noticed that something didn’t feel quite right. In that moment, he couldn’t pinpoint exactly what was wrong, but his disquieting sense that it was in his brain was soon borne out. His wife noticed a droop in his mouth—a telltale sign of stroke—and he was immediately rushed to Brigham and Women’s Hospital in Boston, where he underwent emergency surgery for a life-changing stroke.

For 43 days afterward, Steve was unable to speak—undoubtedly a seismic shift for anyone, but in particular for someone who communicated publicly as a professional. Indeed, before his stroke, Steve led a successful career as a Managing Director for Hartford Fund, in which capacity he partnered with MIT’s AgeLab to enhance the quality of life of elderly individuals. Now, Steve applies that same inner focus, determination, and altruism toward his stroke recovery and advocacy. 

We were fortunate enough to sit down with Steve to hear from him, in his own words, about his work with Boston University’s Aphasia Resource Center—where Constant Therapy co-founder Swathi Kiran, Ph.D., CCC-SLP, serves as Research Director—and how important it is to him to pay it forward for the next person who might walk a similar path.

The following interview has been edited for concision and clarity. 

• For readers who might not be familiar with your story, would you share some background on the stroke you experienced and your recovery journey since?

It started back in December 2016, when after coming home to Boston on a flight from Seattle, I thought something was off with my lungs. I went to a doctor, and although my lungs were fine, an EKG showed that I had atrial fibrillation. I had a pacemaker implanted to treat it, and while my primary care doctor urged me to start taking the anticoagulant medication Apixaban (Eliquis) to prevent a stroke, the cardiovascular surgeon disagreed. He told me my risk of stroke was so low that it was unnecessary. About two years later, I had a stroke. 

I spent nine days at Brigham and Women’s hospital after having surgery for the stroke, and then I went home to Cohasset, Massachusetts, to finish my recovery. I couldn’t say anything for 43 days, and I didn’t pass the swallow test for 86 days after the initial stroke. I was used to presenting to hundreds of people in my line of work, and I just never thought that I would have heart issues, but there I was. 

• How did you first learn about Boston University’s Aphasia Resource Center and Constant Therapy?

In the early days after my stroke, my wife would accompany me to speech therapy, where they taught me what aphasia was. At the end of my 19 months in speech therapy, my SLP introduced me to Liz Hoover, the Clinical Director of the Aphasia Resource Center. I went to Boston University’s Sargent College the next day to meet with the people who work at the Aphasia Resource Center, and that’s where I met Swathi Kiran.

• What impact has the Aphasia Resource Center had on your journey? 

Swathi is a very significant person for me and my life—she has been so positive. All of the professors and other patients at the Aphasia Resource Center have had such an impact on me. When I see other people who have aphasia, I understand what they’re going through and learn more about my own journey. 

I went to the Aphasia Resource Center every other Saturday to join a group of about 40 to 50 other people. Swathi would show us videos of people who had also had a stroke, and through those videos, I learned about a woman named Mary, who had been a school principal just before her own stroke. In the video, Mary tells the story of her stroke. She used Constant Therapy to help her recover, and whenever I think of Swathi and Mary, I think of the difference they’ve made in so many people’s lives, including mine. About a month ago, I knocked on Swathi’s office door to tell her what a difference she’s made in my life. 

• There’s been a brighter spotlight in the public discourse on aphasia since Bruce Willis shared his own experience with it. What do you wish more people knew about aphasia, and what is something you wish you knew at the start of your recovery? 

Somewhat serendipitously, Bruce Willis’s film The Kid (2000) is one of my favorite movies—it features Willis at his very comedic best. After the news about Bruce Willis came out, Boston 25 News did a segment on aphasia that featured me, Swathi, and Mary discussing the work of the Aphasia Resource Center and Sargent College. I wish more people knew that with aphasia, you can see everything in your brain you want to say–it just doesn’t always want to come to your mouth. 

For those people who have a person close to them with aphasia, I wish they knew what a difference they’re making in that person’s life. And I wish that people with aphasia knew that their experiences also make a difference for others who have aphasia and their loved ones. I would tell them: Continue to do what you do because you’re good at it. Working hard is what’s important. 

• How do you stay motivated and positive on tougher days?

What makes life important to me in good moments and bad ones is motivation. And motivation is good, but you also have to practice, practice, practice. Exercise is helpful, as it’s one of the most important things you can do for your brain, and it helps you process your experiences. I love walking by the ocean in Cohasset. I also used to like to read a lot before I developed aphasia, so I still do it. For example, I recently finished a 29-CD audiobook about Alexander Hamilton in a month and a half because I told myself, “Steve, this is important because you’re getting your brain to do what it’s supposed to do.”

I also stay motivated by reminding myself about the interconnections in life. My father was one of nine children, and his older sister Margaret always looked out for him, especially after their mother, Sarah, passed away when he was 13. Margaret had a stroke and lived afterward for 27 years before passing away in 1995. I’m one of ten children and am the only one who has had a stroke, but witnessing Margaret’s recovery journey made a difference for me. When I think about my journey, I look back at hers. Last May, I was able to put a headstone in the cemetery to honor her. It was and still is helpful knowing that she had been there before me, surviving a stroke and persevering through it. Margaret looked after my dad first, then she looked after me, so I finally got to look after her.