Podcast: Exploring devices, apps and other technology related to Parkinson’s disease

“Now I can write by hand. I actually wrote a Christmas card for my husband this year — for the first time in three years,” explains Elaine Paine on the latest episode of the Parkinson’s Life podcast, talking about the difference it has made wearing Parkinson’s CUE1 device, designed to alleviate symptoms such as freezing and sluggishness.

In this episode, Elaine, who was diagnosed with Parkinson’s disease in 2015, talks to movement disorder specialist Dr Alistair Mackett and Lucy Jung, CEO of Charco Neurotech (the company behind the CUE1 Parkinson’s device) about how technology can improve people’s lives Parkinson’s disease patients. .

Elaine is a self-confessed technophobe, but since her Parkinson’s diagnosis, she has adapted to a wide range of technology-based supports, from running remote support groups via Zoom during the pandemic to learning how to use CUE1 and its companion app. and most recently trying an apomorphine pen, which injects a dose of the dopamine agonist apomorphine directly under the skin.

Elaine’s key is simplicity: “The more complicated it is, the less likely I am to continue using it.”

How technology should help – not replace – the face-to-face approach

“I literally had to break up an argument between a couple!” Dr Alistair Mackett describes how frustrating it is to assess a patient in such a short visit when it does not give an accurate picture of their daily life. “They start walking and I say, ‘Oh, pretty good,’ and then the patient’s wife says, ‘You never walk like that!’ You never wave your arms, you never lift your feet… and now you’re walking perfectly! And I’m not really sure what to do because the person I saw in the clinic seems to be doing well, but their partner at home sees a different picture.”

This is where technology can make a difference, explains Dr. Mackett. A Parkinson’s disease device, such as a wrist-worn monitoring device, can provide the doctor with information about how symptoms such as slow movement and tremors affect a person from day to day.

“That would be amazing,” agrees Elaine.

However, both Dr. Mackett and Elaine also agree that technology cannot replace face-to-face consultations. And in fact, their discussion in the podcast shows that one of the best things technology can do is connect communities, from conversations on online forums to the potential of using technology to connect people who are at the same stage of Parkinson’s disease, or perhaps to setting up a mentoring service.

It is these face-to-face communities that help people with Parkinson’s disease encourage each other to try new devices and other technologies to treat Parkinson’s disease.

“We talk about them in my support group,” says Elaine. “We learn things this way. We say, “Okay, who uses the apo (apomorphine) pen?” So we can talk to people who do it, rather than a clinician who is doing everything they can for you but may not know how you might feel about it.”

Listen to the full episode on Spotify by clicking the link above, or on your podcast provider of choice.

Parkinson’s Europe provides this article for information purposes only; does not represent the views of Parkinson’s Europe and does not constitute an endorsement by Parkinson’s Europe of any particular treatment, therapy or product.