Podcast: Explore Parkinson's devices, apps and other technology

“I've learned to write by hand, and this year I wrote my husband a Christmas card for the first time in three years,” Elaine Payne explains in the latest episode of our show. Parkinson's Life PodcastTalk about the difference wearing it has made Cue 1 Parkinson's disease devices designed to relieve symptoms such as stiffness and slowed movements.

In this episode, Elaine, who was diagnosed with Parkinson's disease in 2015, speaks to Dr Alistair Mackett, movement disorder specialist, and Lucy Jung, CEO of Charco Neurotech, the developer of the Parkinson's disease treatment device CUE1, about how technology can improve the lives of people with Parkinson's.

Though she is a self-confessed technophobe, Elaine has adapted to a wide range of tech-based supports since her Parkinson's diagnosis, including running remote support groups on Zoom during the pandemic, learning to use CUE1 and its companion app, and more recently trying an apomorphine pen, which injects the dopamine agonist apomorphine directly under the skin.

Simplicity is key for Elaine: “The more complicated it is, the less likely people are to stick with it.”

How technology can help, but not replace, face-to-face approaches

“I've literally had to mediate a fight between a husband and wife!” Dr. Alistair Makett talks about how frustrating it can be to assess patients in the short space of a consultation, and not get an accurate picture of their daily life. “They start walking, and I say, 'Oh, that looks pretty good,' and then their wife says, 'I've never seen him walk like that before! He's not swinging his arms, he's not lifting his legs… but now he's walking perfectly!' It's hard to know what to do because the patient seems fine in the clinic, but their partner at home sees something different.”

This is where technology can make a difference, explains Dr Mackett: Parkinson's devices, such as wrist-worn monitoring equipment, can provide clinicians with information about how symptoms such as slowness and tremors are affecting a patient's daily life.

“That would have been great,” Elaine agrees.

However, both Dr. Maket and Elaine also agree that technology cannot replace face-to-face consultations, and in fact the discussion in the podcast indicates that one of the best things technology can do is connect communities, from chatting in online forums, to potentially using technology to connect people at the same stage of Parkinson's, or even setting up mentoring services.

And these in-person communities help Parkinson's patients encourage each other and try new Parkinson's devices and other technologies.

“In my support group, we talk about them,” Elaine says. “That's how we find out things. What we do is, 'Okay, who's using APO?' [apomorphine] That way you can talk to the people who are actually doing it, rather than clinicians who are doing the best they can for you but may not really know how you feel about it.”

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

Parkinson's Europe shares this article for informational purposes only. It does not express the views of Parkinson's Europe, nor does Parkinson's Europe endorse any particular treatment, therapy or product.

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