Now before anyone thinks that I volunteer my Mum for any clinical trial going (I do try!), I am not the sort of person who pushes others into things without getting involved myself. In the name of Parkinson’s research, I am a fully-signed up and certified brain donor (some might think I have passed it on already!), I have aaaaarrrrhhhhhhh’d for a very long time down a phone line so that my voice can be analysed and this week I have found a new pastime – “100 for Parkinson’s“.
Now I can’t sign my Mum up for this one – Dad does have a mobile phone and, despite him being in charge of it, it is Mum that manages to silence it when the Calypso bursts forth, prompting the next shot of levodopa. However, it is NOT a smartphone. It’s not even average intelligence. It certainly can’t take pictures. It is A PHONE. But I, on the other hand, am Gadget-woman (as my friends and family will testify). So I clicked on the link for “100 for Parkinson’s” and downloaded a very pretty flower-like App onto my phone.
There are a lot of references to BIG DATA and that is just what this App is. 100 for Parkinson’s does not mean 100 people – you have to record your data for 100 days and then the science geeks analyse it. Anyone (with a smartphone of course) can participate – PWPs and not. I don’t even have to remember to log my data every day because my phone reminds me. It’s very easy – I just swipe on the flower petals to log how I’m doing. You can choose what you want to record so that it best fits with your situation. As a non-PWP, I did not choose tremor for example. Every evening at 19:30, I tell my phone what my sleep was like, how much exercise I have done today, how long I have spent in front of the screen (failing THAT task EVERY day!), how I feel about work, what my day was like and so on. I am also recording weekly weight and blood pressure, so it is making me thing more about healthy lifestyle choices, which is no bad thing.
The study is aiming to be the biggest of its type, collecting data from 100,000 people across the world. Then the data can be mined by Parkinson’s researchers to facilitate improving the lives of PWPs. For ten swipes of the mobile phone, that’s an impressive outcome! Give it a go!