Stimulating change for people with Parkinson’s
Working with people with Parkinson’s to prioritise and design new research projects often leads to ideas we (the researchers) could not have thought of by ourselves. Our newest project is a particularly exciting example of this kind of collaboration.
During one of our ongoing research projects, we asked the people taking part (as participants) to help us prioritise how we use the results. The study itself is funded by the Medical Research Council, and it aims to identify new surgical and pharmacological treatment approaches for Parkinson’s. To do this, we’re recording brain signals from deep inside the brain in people who have had a surgery called ‘deep brain stimulation (DBS)’.
DBS is a surgical technique with a long and very successful history of improving the lives of people with Parkinson’s and other movement disorders. In Parkinson’s, electrodes are implanted into brain regions called the basal ganglia to deliver stimulation. Watch this video to see how transformative the effects of this surgery can be:
As well as providing stimulation, it is also possible to record from the DBS electrodes, and researchers have taken advantage of this capability for decades to help us understand how brain signals influence Parkinson’s symptoms. What we learned from this work is that brain signals are different in the Parkinson’s brain. In fact, overactivity in particular frequencies seem to be closely linked to the severity of Parkinson’s symptoms.
We are now seeing the results of this research translate into new ways to treat Parkinson’s. In one exciting development, some DBS devices can now continuously record from the brain and adaptively respond to increases in this Parkinson’s-related brain signal, meaning that people receive stimulation only when they need it. This capability is already being deployed in the newest generation of devices, and we are hopeful it will deliver even better treatment responses than already achieved.
We talked with people about how the information we’re recording about their brain signals could guide future treatments. While they endorsed our plan to extend the range of symptoms that DBS can treat, they also told us they would like to be able to see these brain signals for themselves.
Why can’t I see this information from home? I’d like to show my wife there’s really a brain in there.
Joking aside, people told us of multiple ways access to their own brain signals could be helpful. In addition, their clinicians told us that giving people access to these signals could help them work with their patients to understand how to manage their condition together.
For example:
- The signals could help people differentiate between symptoms and medication side effects. It is often difficult for people to tell the difference between these two, and clinicians often don’t see people when the symptoms or side-effects are present. Brain signals recorded by DBS could give both clinicians and people with Parkinson’s an objective way to know the difference, giving them control over medication choices that would restore motor function for longer periods of the day.
- Clinicians and people with Parkinson’s told us they could use the brain signals as a ‘red flag’, letting them know when medication or DBS is not keeping brain signals under control. While this would also result in worse symptoms, people would value the objectivity that brain signals could potentially provide. Sometimes for example, people blame fatigue or stress for changes in their symptoms. Information from brain signals could let them know if they would benefit from input from a clinician who can adjust DBS settings and/or medication.
- People said they would value the opportunity to monitor how Parkinson’s-related activity in their brain interacts with lifestyle (sleep, diet and exercise) or mood (stress/anxiety), therefore helping them to see what changes can be made.
- Finally, we already know that people can control their own brain activity, provided they can see it in real time (called neurofeedback). A tool that allowed people to visualise their own brain signals would allow people to access this potential in their daily lives, providing additional control over their symptoms.
With seed funding from Manchester Metropolitan University, and in collaboration with the company Medtronic (who manufacture the DBS devices that can record brain activity), we are making this a reality. We will carry out the computational work needed to make sure the signals that are communicated are accurate and reliable. Importanatly however, we want to hear from more people who live with Parkinson’s about what they would do with information that can be recorded directly from their brain via DBS.
Over the next few months, we’ll be organising a series of online and in-person events for people affected by Parkinson’s, whether you have DBS already or not. We need your help to make the work we’re planning relevant to your lived experience. We also need you to help us design the tools themselves, so that information about brain signals can be easily understood and acted upon.
For now, you can sign up to our Parkinson’s UK Research Interest Group here: https://northwestparkinsons.org/. We’ll be promoting the events through the group, and will be travelling across the UK to hear from as many of you as possible. Alternatively, email me on n.ray@mmu.ac.uk if you’d like to hear more.
We’re very excited to work with you all.