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Parkinality writer Julie Walker talks to Alzheimer's Research UK Drug Discovery Alliance researchers about living with Parkinson's disease

Parkinality columnist Julie Walker, of Bishop's Stortford, writes not about parking, but about living with Parkinson's disease in her 50s...

The Wise-ish Man and I had a rare excursion outside the walls of Stortford when we were asked to give a talk in London to a group of researchers working at the Alzheimer's Research UK Drug Discovery Alliance.

Alzheimer's Research UK is the UK's leading dementia research charity, focusing on all forms of dementia. Dementia, like Parkinson's disease (PD), is one of a group of neurodegenerative chronic conditions which are all very different. None (currently) has a cure.

Researchers are clever people who spend their time with test tubes and Petri dishes, working tirelessly to create new drugs to manage or even cure the conditions. They are an incredibly important link in a complex chain of very clever academics.

However, they are probably one of the furthest from those living with the conditions. This was therefore a rare opportunity for us to speak directly to the researchers and tell them how we manage and live with a neurodegenerative condition on a day-to-day basis.

Speaking at Alzheimer's Research UK had relevance for us living with PD as there is a connection between dementia and PD. Astute readers will realise that I don't write much about the non-motor symptoms of living with PD. One reason is that there isn't much humour in non-motor symptoms, such as being constipated. Okay, maybe that's a bad example.

Julie Walker and her partner Andy Johnson, AKA The Wise-ish Man, giving their talk to researchers
Julie Walker and her partner Andy Johnson, AKA The Wise-ish Man, giving their talk to researchers

There is, however, one non-motor symptom which I have been burying my head in the sand about. Some people with PD also live with a particularly awful form of dementia called dementia with Lewy bodies. I haven't written anything about dementia because, to be completely honest, it scares me. I am not ready to hear about it.

Back to the conference. After a lovely dinner, when PD behaved itself, and a tricky self-service buffet breakfast, when PD definitely didn't behave, we were third on the agenda – an interesting juxtaposition, following an academic presentation.

We described to 80 researchers how we deal with living with a neurodegenerative disease. We told them how we might see our neurologist for half an hour twice a year, then we explained the tricks and tips we use to manage our condition for the other 8,759 hours a year (8,783 hours in a leap year). We recited poems to describe our symptoms and talked about the Time Warp, walking backwards, using the stairs, counting steps and the band Royal Blood.

We were very well received despite PD deciding to kick off, with the post-DBS (deep brain stimulation) operation tremor being the main performer. Following lots of questions, the feedback was incredibly positive.

In the words of Professor John Davis, the Drug Discovery Alliance's director of business development, who invited us to speak: "It is good for us to give up our test tubes for a day and think about what we are actually trying to change for individuals and families managing these diseases. It is both an eye opener and energising. It gets us thinking outside

the box."

So, who are Alzheimer's Research UK and the Drug Discovery Alliance?

Alzheimer's Research UK's mission is to achieve a world free from the fear, harm and heartbreak of dementia and their goals are to better understand, diagnose, treat and reduce the risk of dementia.

The Drug Discovery Alliance, launched in 2015, is one of its strategic initiatives and unites three dedicated drug discovery institutes, all working to translate new findings from academic research into potential treatments for dementia as quickly as possible. The three drug discovery institutes are located at the University of Cambridge, University of Oxford and University College London.

For more information, go to www.alzheimersresearchuk.org or email enquiries@alzheimersresearchuk.org.

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