Calgary man develops app to help people with Parkinson’s manage their daily details

Garry Swanson created My Carecycle after years of helping his wife navigate Parkinson's disease.

A Calgary man has developed an app to help people with Parkinson’s disease track the daily details that can be difficult to remember between medical appointments.

Garry Swanson created My CareCycle: Parkinson’s after years of helping his wife Fiona, manage the symptoms, medication schedules and changes that come with the progressive neurological disease.

“I wanted to find a way to help support her as we were going along in the journey,” Swanson said.

The app allows users and caregivers to log medications, symptoms, mood, exercise and “on/off” periods — the times when Parkinson’s medication is working well or beginning to wear off.

Swanson says tracking those changes is important because some Parkinson’s medications are time-sensitive.

“There’s an on period where the medication is effective, then there’s an off period where the medication starts to wear off,” he said. “You want to try and keep track and make sure that the medications are taken at a consistent time.”

The app generates reports patients can bring to appointments with their neurologist or other health-care provider.

“The great thing with the software is you can print off reports to give to your doctor or to your neurologist, and go, here’s how I’ve been feeling, here’s how the medication has been going,” said Swanson “Then the doctor can look and go, ‘okay, so you’ve been pretty consistent taking your medication in the morning and afternoon, but you’re sort of relaxing a bit in the evening’, so we can make adjustments.”

Swanson says the idea came from attending Fiona’s neurology appointments and hearing the kinds of questions doctors ask about medication timing, symptoms and daily changes.

The app is designed to help users keep information in one place, including medication schedules, reminders, symptom logs and records that can be shared with doctors.

Tracking matters

Fiona says that kind of tracking matters because Parkinson’s can affect both movement and memory.

She says doctors often ask when medication starts to wear off, but that can be difficult to answer without keeping a detailed record.

“I never realized how important the timing was,” she said. “I have the app now, and so now I can put it in there.”

Lana Tordoff, CEO of the Parkinson Association of Alberta, says the amount of information people with Parkinson’s and their care partners are expected to manage can be overwhelming, and appointments can also be stressful, making it easy for patients to forget details they wanted to raise.

“The neurologists are really great and they’ll ask you all the questions, but even in the moment, there’s always doctor anxiety,” Tordoff said. “You always feel a little bit nervous being in the doctor’s office. And so it’s real easy to forget something that was actually really important to you.”

Tordoff says tools that help people put information on paper, or in an app, can be useful for patients trying to explain what has been happening between medical appointments.

“This is where an app like Garry’s created can come in really handy,” she said. “You don’t have somebody else to kind of anecdotally support what you’re telling your physician.”

‘It’s a family disease’

Tordoff says Parkinson’s affects more than the person diagnosed.

“It really is a family disease, because it affects everybody,” she said.

She says symptoms can change unexpectedly, forcing patients and care partners to adjust their routines, plans and expectations.

“Sadly, that is how this disease progresses,” Tordoff said. “One day you’re just fine and then the next morning you wake up and there’s a new symptom and it wasn’t expected and there was no warning notice.”

Fiona was diagnosed with young-onset Parkinson’s after already seeing the disease affect her father.

She says the disease is always present in daily life, whether she is dealing with medication, movement, memory or word finding.

“It’s just a chronic thing that’s always there,” she said. “You got to deal with, you got to worry about, to think about.”

Fiona later underwent deep brain stimulation surgery, which she says made a major difference in her physical symptoms and reduced the number of Parkinson’s medications she had to take.

But she says the procedure also changed how she experiences the disease, forcing her and Garry to relearn parts of her care routine.

“I kind of feel like I’ve reset myself,” she said.

Swanson says My CareCycle was built to help with those kinds of changes by giving patients and caregivers a simple way to keep information organized.

He says it is not meant to replace medical advice or become the only tool someone uses to manage Parkinson’s, but he hopes it makes appointments and day-to-day care easier.

“It’s not going to be the be-all and end-all,” he said. “But I hope it would help people keep track of the disease more and more.”

Swanson says he chose not to make the app a monthly subscription, even though some people encouraged him to do so.

In Canada, he says the full version costs $14.99 as a one-time purchase.

“I know how expensive medication is in the U.S., so I don’t want to soak people,” he said.

The app has had about 100 downloads over the past year, and Swanson says he continues to update it every few months.

He recently optimized it for iPad after hearing that some people with Parkinson’s may find it difficult to use smaller buttons on a phone.

Swanson says feedback from users has encouraged him to keep improving it.

“There was a point where I was going to abandon it,” he said. “Then I got an email from someone saying, ‘what a great app!’ , and that pushed me to keep the app going.”

‘I’m all in’

Fiona says Garry’s support has been constant since the couple met.

She says early in their relationship, she told him he needed to understand Parkinson’s would be part of both their lives.

“I said, you have to be all in right now or forget about it,” she said. “And he says, no, I’m all in.”

Swanson says he does not see himself as simply a caregiver.

“I don’t feel like I’m being a caregiver,” he said. “I feel like I’ve just been a partner in the journey.”

Tordoff says the Swansons’ willingness to share their experience can help others facing a Parkinson’s diagnosis.

“We’re really lucky to have people like Garry and Fiona who are so willing to share their experiences and share their lives and do what it takes to kind of help the next person who’s diagnosed,” she said.

My CareCycle: Parkinson’s is available through the Apple App Store.

The app is intended to help users organize and track information, but it does not provide medical advice, diagnosis or treatment.