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Update on the Edinburgh Branch Posters Presented at WPC 2019

The Branch had three posters presented at the World Parkinson Congress, Kyoto 2019 – the individuals involved are identified below and there are links to the pdf versions:

  • Where’s the feeling better box? Beyond PDQ-39: An examination by Alison Williams of how our quality of life is measured by the PDQ-39 questionnaire, and what alternatives there might be.
  • Parkinson’s smell levels, symptom management and empowerment: When Joy met Alison: The story of Joy Milne’s amazing ability to smell Parkinson’s, her work with Manchester University, and the work she has done with Alison Williams on how exercise has reduced Alison’s Parkinson’s smell levels dramatically, written by both Joy and Alison.
  • Creating a virtuous cycle of PwP support: The journey from impairment to empowerment: A four-stage model which looks at how PwPs move from being rabbits in the headlights at diagnosis, to being guiding lights to others, with help, support and mentoring from other PwPs. This poster was a collaboration between Judith Shepherd, Bill Wright and Alison Williams, and was deemed ‘excellent’ by the WPC and made part of one of the Congress’s prestigious poster tours.

Alison tells us that each of the three posters has developed a life of its own, and the work behind them is currently being taken forward in different ways.

  • The thinking behind Where’s the feeling better box? Beyond PDQ-39 is being further developed by Dr Yoon Irons of Derby University, in collaboration with a colleague in Belfast University, and with support from Alison.
  • Alison and Joy are writing up their joint research as a paper, building on the latest research by Bastiaan Bloem and his colleagues on the neuroprotective and neuroregenerative effects of intensive exercise in a further development of Parkinson’s smell levels, symptom management and empowerment: When Joy met Alison. They are hoping to submit their paper to the Journal of Parkinson’s Disease.
  • Because their paper Creating a virtuous cycle of PwP support was deemed ‘excellent’, Bill, Judith and Alison were invited by the WPC to write it up as a blog post. The blog was published at the end of May 2020, and you can find it at

Since then Julie Jones, the Parkinson’s UK Clinical Academic Fellow at Robert Gordon University, Aberdeen, has joined them to write a paper extending their thinking and their audience to include health professionals as well as PwPs and care-partners.

And finally, Alison and Joy’s work was captured in an extraordinary podcast by NPR (National Public Radio) in the US. You can hear it at:

The posters were designed by Alan Tait:

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