An app for "Parkies"

Putting patients in control

“Don’t you just love being in control?” A 1990s advertising slogan for British Gas came to mind the other day. Which is ironic because right now none of us feel in control of our bills from energy suppliers - but I was thinking about Parkinson’s. I’d just had a conversation with Kuhan Pushparatnam - better known on social media as @morethanatremor - after spotting a rather brilliant animation he’d put online.

More Than a Tremor @morethanatremor

There are good days and bad days with #Parkinsons ..but what makes a good day? To find out I kept a record of my daily activities for 60 days. I was surprised by the results. Here’s what I found…

It was about an experiment which had seen him measure many aspects of his daily life - how much he exercised, whether he took his medication on time, how bad his Parkinson’s symptoms were - and try to draw some lessons from the data. As we talked about this, and about his plan to create an app which would help other people with Parkinson’s do something similar, I realised it was all about giving we Parkies something we often lack - a sense of being in control of our lives.

Kuhan had a long and successful career in the mobile phone industry working for the likes of Vodafone and Orange and carried on even after he was diagnosed with early onset Parkinson’s nine years ago. But he stopped last year and set about using what he’d learned about product management in a new direction:  “I was versed in understanding market requirements and trying to find services that suited those requirements. And then I thought, let me try and do the same sort of thing in the Parkinson's space.”

With a degenerative condition like Parkinson’s, those of us who have it know we are not going to get better. But while some people will decline rapidly, others carry on with relatively few symptoms for years - so far, touch wood, I seem to be in the latter camp. But what Kuhan has spotted is that the big issue is quantifying the symptoms and measuring the rate of decline; “That decline is crucial to understand because it dictates the sort of the treatment that we have and the mix of meds that we take.”

His statistical exercise taught him a few lessons - that taking his medication on time was more important than he’d thought, that his symptoms could be affected by exercise and sleep: “I was able to see how much my mood lifted the days that I did exercise, and on the days that I had a good night's sleep - or conversely if I had a stressful day or was feeling anxious I could see the impact on my symptoms.”

His mission now is to turn this into a smartphone app. While there are plenty of apps designed for clinicians to monitor people with Parkinson’s there is a gap in the market, says Kuhan, for something aimed just at patients. Getting the app developed and out into users’ hands has proved more challenging than he’d expected.

He has realised that anything that offers medical advice will be considered a medical device and will need approval from the regulator the MHRA. That could take ages so he’s designed MindMyPD - the working name - to be an app that just allows the user to monitor their condition and learn more about Parkinson’s, rather than advising them about treatment. What he hopes says Kuhan is that the app can “provide some useful insight to the user so that they can then have an informed discussion with the neurologist.”

So, the first version will include a medication reminder, a sleep. diary, and a symptom checker, where the user has a sliding scale from mild to severe to assess symptoms such as a tremor or dyskinesia, the involuntary movements or twitches associated with Parkinson’s. That sounds like quite a subjective process but as Kuhan points out, the same is true when the neurologist starts the nine monthly consultation with the question “so, how has it been going?” The hope is that version 2 of the app will be able to make use of data from devices such as the Apple Watch to give a more objective view of symptoms.

Despite all of the challenges Kuhan is confident there will be a market for this app: “The Parkinson's community, I think, is crying out for this sort of service.” He hopes to get the first version out by the end of the year and if he succeeds I will be among the first to install it. After all, I just love being in control…