New technology, digital devices and social media can provide a wealth of help and support for people with Parkinson’s (PwPs) – tech expert Matt Eagles helps Parkinson's Europe navigate some of the highlights he’s found useful on his own Parkinson’s journey.
Matt Eagles is head of patient engagement at global healthcare communications group Havas Lynx. He lives in Cuddington, near Northwich, UK, with his wife and 15-year-old son. Matt, 49, first noticed his Parkinson’s symptoms at just seven years old, and was diagnosed shortly after. Here, he shares his top technology tips for PwPs.
Devices that track symptoms are really useful, as they help the PwPs become experts on their own condition.
How useful can technology be for people with Parkinson’s?
“If PwPs embrace technology, they can help themselves, which is incredibly important. Before the emergence of health tech, I used to plot my daily ups and downs on graph paper and give them to my specialist to look at. Nowadays, with the availability of digital, it’s much easier.
For 20 years I didn't know anyone else with Parkinson's and now technology helps me to keep in touch with a huge Parkinson's community around the world.
“I think wearable devices are the future of Parkinson’s. I’m often asked if I am having a bad day, but it can be misleading for me to answer based on that moment. Parkinson’s symptoms can change second by second, so I could say I’m ok, but five minutes later find I’m experiencing dyskinesia, for example. Devices that track symptoms are really useful, as they help the PwPs become experts on their own condition.”
Have you always been interested in technology?
“It has actually only been in the past few years that I’ve come into much contact with technology, and I find the digital age really helps me as a PwP. For 20 years I didn’t know anyone else with Parkinson’s and now technology helps me to keep in touch with a huge Parkinson’s community around the world. It enables me to communicate with people experiencing the same difficulties.”
Technology can be daunting if you aren’t used to it – is it for everyone?
“You should never feel daunted by technology. Some apps are so simple and easy to use, anyone can use them despite their age or experience. It’s also very important to consider the carers, as they have different observations to patients. So if you use these apps and devices to record your experience, it can help them to analyse symptoms and patterns. It can be as simple or complicated as you wish.”
Matt’s top websites and technologies for people with Parkinson’s
Walk With Path ‘Path Finder’
“Path Finder is a device that you attach to your shoe, and it fires a green laser light in front of you when you walk to help combat freezing. This is a really useful aid because the light gives you a focus to step over. Some people use doorways, for example, but if you are walking down the street you don’t have anything to focus on. This light really helped me modify my gait.
“You can buy them online – they aren’t in mass production yet so at around £395 (€451) the cost can be prohibitive. But it provides a solution to a problem, which is what tech is all about.”
Emma Lawton’s PD365 video log
“I use YouTube a lot to see how are other PwPs are coping, and I get daily updates from Emma Lawton’s YouTube channel PD365.
“Her videos are so insightful. She keeps everything real, and doesn’t hide her symptoms. She tackles real issues, like how to apply her make up without a steady hand, or using a straw to drink from a cup to avoid throwing it everywhere. People get what she says, because she doesn’t hold back. She’s not afraid to tackle the issues some other Parkinson’s perhaps shy away from. These issues aren’t always pleasant, but it’s what we have to deal with.”
Evergreen Life app
“I use this app on my mobile phone and it does all sorts of things – I can reorder my prescriptions using the app, and it can notify me when they’re due – it goes straight to the pharmacy, and a day or two later my medication is ready to collect.
“As a PwP, I’ve taken 220,000 units of medication, and I sometimes forget to reorder, so this is a really good app for me. You don’t have to worry about calling up the GP to explain to someone officious that you are running out – you just reorder via the app at any time of day or night. It’s so convenient. It has other features like tracking your exercise but you can use it as much or little as you like.”
Dragon Speech Recognition Software
“Dragon Software is brilliant for me. If you have shaking hands, and struggle to type, this is very useful. Basically, you speak into a microphone, and it converts your speech into type on the page. You have to read a long passage to it, and it learns the words you use most often, so when you’re speaking it recognises the words to use."
Start Living Today PD (SLTPD)
"Founded by Heidi Reynolds, SLTPD is a Facebook community that positively encourages PwPs to live positive, happy lives, despite Parkinson’s. When people are comfortable in a community, they discuss things they wouldn’t discuss otherwise, and it brings tremendous comfort. I asked a question about initial diagnosis, for example, and got so many responses. We have administrators in the UK, Australia and all around the world, so you get access to a 24-hour community. This kind of outlet is crucial to help stop people feeling lonely."
"I really like the Parkinson’s Life website as it has a variety of stories and the way it is laid out is very user-friendly. It gives great information and it’s so easy to navigate. I like the way it recommends articles it thinks you’d like to read as well, and I look through all the sections as I like to keep up to date on what’s going on and get the latest news."
"I bought a Fitbit device for my wife and now I plan to get one for myself. It’s really good to see how much exercise you’ve done, as it is crucial to wellbeing in Parkinson’s. You’ve got to keep moving, and a Fitbit helps you to help yourself. I think PwPs can benefit from having a target to spur you on and focus your mind, and devices like Fitbit are really helpful for this."
Have you found a digital device, website, app or other piece of technology that helps you as a PwP? Do you find technology helpful or daunting? Email [email protected] and tell us your stories.
Parkinson's Europe is sharing this article for information purposes only; it does not represent Parkinson's Europe's views and is not an endorsement by Parkinson's Europe of any particular treatments, therapies or products.