Losing your sense of smell deprives you of so much. The richness of our lives and our experiences are enhanced through the strong memories that are tied to smell. Our closest relationships are supported by the smells of those we love. These are some of the lessons I’ve learned as I’ve spoken to people with smell loss across the country. I am Dr Richard Rees, Clinical Research Fellow from the Department of Clinical Neuroscience at University College London.
I’m also aware that for many people with smell loss, there is another dark spectre that accompanies smell loss, and that is the fear that, for the minority, their condition may be linked to progressive brain diseases such as Parkinson’s or Alzheimer’s.
I have been seeing people with idiopathic anosmia – that is smell loss with no identifiable cause – as part of the Predict-PD study. This research project aims to detect people at higher risk of developing Parkinson’s. We know that many people with Parkinson’s report smell loss years before problems with movement. However, very little research has looked at people with smell loss to see what makes it more likely for some of them to develop Parkinson’s. I have been working for the past 2 years to start to answer that question. If we can identify markers that indicate that a person’s smell loss is linked to Parkinson’s, not only would we be able to reassure most people with anosmia that they are not at risk, but also work closely with those at higher risk to manage things from an earlier stage. What’s more, as we get closer to treatments that don’t just treat the symptoms of Parkinson’s but actually slow or stop the disease, identifying people at the very earliest stages is more likely to be beneficial.
What can you do? If you are aged 60-80 you are eligible to take part in Predict-PD. Go to www.predictpd.com to learn more and sign up. The study is done on a computer at home, and takes about 25 minutes. You will answer questionnaires and do some online tasks. We will ask you to repeat the assessments once a year to see how things change over time. If you have idiopathic anosmia diagnosed by a smell specialist, please contact me on Richard.firstname.lastname@example.org and I will arrange to come to you, to do an in-person assessment that takes a little over an hour.
The study is based at the Institute of Preventive Neurology Unit at the Wolfson Institute of Preventive Medicine, Queen Mary University of London, and the Department of Clinical and Movement Neuroscience at University College London. We have been working closely with Fifth Sense since the study started, and collaborate with Professor Carl Philpott and Mr Simon Gane.