Jeri Burtchell was diagnosed with relapsing-remitting Multiple Sclerosis (MS) in 1999. She lives in what she describes as a “really dinky, small town” in northern Florida that has one neurologist. She told her then-neurologist that the medication he had prescribed didn’t work. He insisted that it did. And she spent eight miserable years on that therapy.
“It got to the point where I was suicidal,” Burtchell said. “I decided I was going to kill myself or do something to change things.”
Change things Burtchell did. She got herself a new neurologist, who also happened to be a lead investigator in a clinical trial for the first-ever pill form of treatment for MS. That was back in 2007. When she didn’t find anything on the Internet about the patient experience with clinical trials — everything was from the perspective of physicians and researchers — she started her own blog.
“Patients started finding me and following me to find out how the study was going,” said Burtchell, who’s also founder and CEO of Partners in Research, which is dedicated to research education and awareness about clinical trials.
“What I realized is my blog was serving as a recruitment tool for the clinical trial. Before I knew it, I was an MS advocate,” said Burtchell, who recently took home a first-prize purse of $20,000 for an app called Stay Calm at Hack MS. This three-day event, which took place in Boston from February 6 to 8, challenged teams to develop stress management solutions for people with MS.
She collaborated with Matt Winslow of Conversant Health on a prototype of Stay Calm, which helps patients manage their stress through diet, meditation and yoga. The event was sponsored by Biogen Idec, which has first dibs on the opportunity to work with Burtchell to bring the app to market.
According to the MS Society, 2.5 million people around the globe are living with MS. Symptoms can vary from patient to patient and can include muscle weakness and spasms, fatigue, and problems with balance and vision, in addition to other challenges. Healthline says those symptoms can also vary widely for each patient, which is an ongoing source of stress. That’s what makes apps such as Burtchell’s so important to those living with MS around the world. It can help them pursue their dreams.
Read on for Not Impossible Now’s interview with Burtchell:
NIN: Tell me what led you to come up with Stay Calm.
Jeri Burtchell: I will fully admit – and it’s part of the tagline of my blog – I’m a hypochondriac. I have trouble with panic and stress. A lot of that is self-induced worry. I didn’t even know about Hack MS until a friend on Twitter tagged me. After a little clicking around on the event’s website, I realized you didn’t have to be a hacker. You just had to have an idea.
The design of the Stay Calm app really came from a selfish place. What would do it for me? I couldn’t decide if it should be about diet or perhaps it should be a yoga app. I’m no good at yoga. I mean, I can do stretches in my own way, but I don’t know a lot about it. I try to Google it. And what happens is my PC’s on my desk, my yoga mat’s on the floor and I’m on my knees stretching. It would be great if I could have a yoga app on my phone so I could look down and even pause a video demonstration with my nose!
I decided to include yoga and diet with the app; incorporating a “spa like” experience was also important. This app is different from something your doctor will hand to you to do. Stay Calm doesn’t say a lot about MS — that will stress you out. It’s distracting yet relaxing.
You’ve also got a reminder feature and a stress diary as part of your app. Why are those important?
Burtchell: My short-term memory is really horrible. I was joking with someone the other day: I don’t need to walk into another room to forget something. I forget to walk into the other room!
The quickest way to help with that is to create a disposable message that I can play back in the next 15 minutes or an hour. I could put up a sticky note to remind myself to put out the fire, for example, but I’ll have to remember to write it down — and where I left the sticky note!
With the stress diary, I figured people would have a tool to jot down what happened in a certain situation and why they felt the way they did. Something quick. This would be a really useful tool to share with your doctor. Then you could discuss together how you dealt with a situation when it came up and how you rid yourself of that problem.
What impact does stress have on those living with MS?
Burtchell: I can’t speak to everyone else’s experience. People with MS are like snowflakes; we’re all different. How people deal with things is different. For me, flying and being in the snow in Boston and competing at the Hack MS event were very stressful situations!
When I told the Hack MS judges that I just need this app right now, I really meant it. A lot of people with MS need routine. With the disease, you’re already waiting for the next shoe to drop, so Stay Calm can help give us some feeling of control over the rest of our lives.
I’d rather have a tool to help me deal with stress than live my life avoiding stress. When doors open, you have to go through them to grow or live — and all of that brings stress and a lot of unknowns. If we can empower ourselves with tools like this it helps us live full lives, despite having a chronic condition.
One of the Hack MS judges asked you why your app didn’t include an online community. You said you didn’t need a community; you needed something in your pocket. Tell me more.
Burtchell: It’s like having a lucky rabbit’s foot in my pocket — though that’s not very lucky for the rabbit! The app’s like a charm. Before I had a cellphone, I had a worry stone; it was a smooth, beautiful, silver-colored rock. I kept it in my pocket and took it out when I was stressed out or nervous.
I have a cellphone that’s bogged down with apps — I’m always getting messages that I need to free up space on it. My cellphone is my connection to the world, my connection to things that help me.
Stay Calm is an app that’s specifically for stress reduction. It has just the things I need.
How did it feel to win first prize?
Burtchell: It came as a huge surprise to me. I thought I’d just go home with the Hack MS T-shirt. I was intimidated by all of the people from MIT!
What’s next for Stay Calm?
Burtchell: It’s at the prototype stage right now. I want to put Stay Calm in the hands of every single person with MS. Whatever it takes to get there. I can’t wait to go and install the app on my phone, so that I can use it and have a better quality of life.
Learn more about Hack MS at this link.
Top photo caption: Attendees at the Hack MS event in Boston on February 8, 2015. (Photo courtesy of Biogen Idec’s Twitter account)