Sparks of Experience
Image source upklyak / Freepik
By Eirwen Malin
One of PD Avengers aims is to increase meaningful input into all stages of the research process from those living with Parkinson’s day by day. Quick off the blocks the core team have set up a group of PD Avengers from around the world to work towards making this aim a reality and work has already begun in several directions. I write on behalf of that group about one project, Sparks of Experience, (working title) which seeks to draw on the unique knowledge held by the PD Avengers membership.
Those of us who live with Parkinson’s every day whether as a person who has been diagnosed or a close associate feel the ups and downs and ins and outs of our own experiences with a deep knowledge that clinicians and researchers cannot have unless they too share those experiences. From time to time we notice particular phenomena, good and bad, that spark the thought “Why is that and why isn’t somebody working out what’s going on?” and sadly often that’s the end of story and that’s a pity because those very thoughts may contain the germ of a real revelation.
There are well known examples of individual’s observations sparking a follow up,. Joy Milne, and her fantastic nose, had noticed her husband smelled different and queried it leading to a research programme. Tandem cyclist Jay L Alberts and his Parkinson’s tandem partner noticed an improvement in her motor symptoms after an extended tandem ride and from their observation the concept of “forced exercise” for Parkinson’s developed.
We want to highlight the day to day observations that we all have. Some of them may seem a little quirky, but we need to shine a light on those too, because just possibly, somewhere amongst them, is a game changing idea and Parkinson’s research needs that idea.
We started just last week with members of the group each sharing their own observations and thoughts and in doing so learned some important lessons. Firstly, even amongst a fairly small number of people there was quite a range of ideas.
The word cloud is not a rigorous analysis, just intended to give a flavour of discussion.
This is a word cloud taken from hasty notes (not verbatim) and written contributions, of the topics raised. Quite an array!
Secondly, hearing individual’s comments struck a chord with others. One of the first observations was from a care partner who watched her husband struggle to turn over in bed and wondered if monitoring this increasing difficulty might be a useful measure. This is of course a well-known feature of Parkinson’s, possibly rather ignored and my own reaction was to think “Yes, why is it so difficult, I can do much more complex movements on the exercise mat, what is special about turning over in bed?” Sharing ideas widely for comment can only increase the chance of uncovering something significant.
Hosted jointly by the Van Andel Institute and Cure Parkinson’s Trust and this year held virtually, the parallel Grand Challenges in Parkinson’s and Rallying to the Challenge events will be held 23-25th Sept 2020.
On Friday 25th as part of Rallying there is
11:10 a.m. EST
From anecdotes to answers: How to turn the patient experience into useful data
Laurie Mischley, N.D., MPH, Ph.D.(c)
Laurie has extensive experience of working with patient data and we will be listening carefully to help us decide how we might proceed with Sparks of Experience. Keep a look out on this website for more information on how you can get involved.
11:30 a.m. EST
PD Avengers introduce the PACT – what does it mean?
Larry Gifford, Tim Hague, Soania Mathur, M.D., Omotola Thomas, MPM
