Taking part in research into vision

Anne shares her experience of taking part in Vision in Parkinson’s — a groundbreaking study into the effect Parkinson’s has on sight and perception.

At 5am I questioned my commitment to assisting in research, but once on the 6.05am train from Leeds to London Kings Cross with coffee and baked goods I felt a tingle of anticipation as to what the day would bring.

I like train journeys anyway so I settled down with my iPad and crochet very happily.

Arriving in London only 6 minutes late I was able to get to the Institute of Cognitive Neuroscience by 9am. I was met by one of the postdoctoral research assistants and an undergraduate student on placement.

Coffee and paperwork over the real business of the morning began. Lots and lots of cognitive and memory tests, from being asked who is the current prime minister to counting down from 100 — in sevens! Remembering and repeating series of numbers and words, then a whole story that I had to refer back to at random moments. Visual recognition of objects in silhouette or photographed from an unusual angle… you get the idea.

I found it all very interesting, and although I could have asked for a break at any time, I chose not to.

Once started on something my habit is to plough through until I’ve finished. Oh but I was glad when lunchtime came around! I spent the hour in a local cafe filling out some questionnaires and mulling things over.

After lunch it was the MRI (a type of brain scan). More consent forms and then they made me comfortable for around 40–50 minutes of lying as still as possible inside the scanner. My arms and legs supported by foam cushions and my head in a padded helmet, so well did they succeed that I fell asleep!

I awoke feeling very refreshed for the final session. This started with blood tests to determine if I carry a genetic marker for Parkinson’s and I was given the choice as to whether I want to know the results or not.

What would you have chosen?

Then it was eye testing, both physical examinations and visual acuity. Having worn glasses since I was 7 years old I was well familiar with most of the procedures. I had even remembered to bring dark glasses to wear afterwards when my pupils would be dilated.

That completed the day and just after 4.30pm I was sitting in the pretty Queens Square gardens waiting for my lovely son to come and take me for dinner.

So will I do it again?

It is a long-term study so I will be asked to go through the same battery of assessments every year.

Unequivocally yes. At no point was I left on my own wondering if I was in the right place, doing the right thing or been forgotten. I was treated with utmost respect as a valued and valuable member of the project. They answered my questions as fully and honestly as they could, without skewing the test.

Finally, I liked the idea that this research could shed light on what is for many people with Parkinson’s one of the scariest aspects — cognitive deterioration.

Although it may not bring answers in my time, I hope its findings will help others.

You can take part like Anne

The Vision in Parkinson’s study is still seeking participants and you can find out more about it on the study website.

There are also many other studies currently underway across the UK that need participants — both people with and without Parkinson’s — to help them better understand the condition, and ultimately developing better treatments and therapies, and one day a cure.

Use our Take Part Hub to look for suitable opportunities near you.