Beyond drugs - the big gap in Parkinson's care

Do innovative approaches such as neurostimulation deserve more funding?

The sums of money that support research into Parkinson’s are lamentably small compared to some more high profile conditions. But what funds there are tend to be directed towards the hugely expensive process of finding new drugs. I have been talking to two people exploring another path - what they call “non drug interventions” - to treat the symptoms of Parkinson’s and hearing about the struggle to get funding.

Jane Ollis got in touch to tell me about her start-up company MindSpire which aims to use non-invasive brain stimulation via the ear. Jane explained that the process involved users wearing a small device much like an earphone, sending out electrical pulses. The target was the vagus nerve which the company describes as “a communication superhighway from our brain to the abdomen.”

The MindSpire device is worn under headphones

MindSpire started by marketing its product as a way of relieving stress .Jane who had started as a medical biochemist, then spent a career in environmental science, wanted to focus on the amygdala which she describes as “your little threat detection mechanism in your brain, that then triggers a stress response.”

The switch to targeting Parkinson’s came after a discussion with David Wilkinson, a professor of psychology at the University of Kent. He set up a trial for MindSpire over the summer where 40 people with Parkinson’s used the neurostimulation device. The results, says Jane, were spectacular: “One gentleman threw his walking stick away and literally went off walking for the first time in years... Another lady got her sense of smell back, having not had that for 20 years.” All the patients, she said, had benefited.

Jane Ollis introduced me to Professor Wilkinson, who is one of the leading proponents of non-drug interventions for Parkinson’s. He runs the University of Kent’s Parkinson’s Centre for Integrated Therapy, whose mission is to make the medical world wake up to the very obvious idea that treating Parkinson’s is about more than just handing out drugs.

“Parkinson's is a multi faceted condition that requires multifaceted treatment,” he says. As well as drugs, he believes that people need to be told about the importance. of diet and exercise, and be directed towards speech therapists, nutritionists and physiotherapists.

But even if they do find their way to some of these healthcare professionals they are unlikely to get integrated care: “I think a big problem is that none of these therapists are joined up or talking to one another.”

But Professor Wilkinson’s other focus is on the kind of technology that Jane Ollis’s MindSpire is developing: “There's a group of neurostimulation techniques that the likes of Jane and I are developing which seem to hold real potential.”

He has spent fifteen years researching this technology, first looking into its impact on brains damaged by strokes before switching his focus to Parkinson’s:

“It turns out you can produce improvements in posture and gait, in mood, in memory and sleep.” Sceptics might assume these improvements might be caused by the placebo effect - just being told you were going to try out a radical new treatment might make you feel better, perhaps encouraging you to throw away your walking stick.

But Jane Ollis and David Wilkinson believe their approach may produce a long-lasting change in the brains of people with Parkinson’s. The professor explains: “Now you all know with your dopamine drugs, when you stop taking them, some of your symptoms come back quite quickly. What we found with neurostimulation is that the effects carry on for weeks and weeks and weeks after you stop. There is no known medication that does this.”

What they now hope to do is run a far more sophisticated clinical trial where some of the participants will be given a placebo. In a drug trial this is relatively simple - you just give people something that looks like the drug but has no active ingredient. With treatments involving a physical device it is more challenging but David Wilkinson and Jane Ollis are confident that they can come up with a solution which will meet the requirements of the medical regulators.

But the real mountain they have to climb is to get the funding for what could be quite an expensive undertaking. “The main blocker is the time taken to write the grant applications to get the money to do the research,” says Professor Wilkinson. “The regulatory pathway is very prescriptive and very clear. The trick is to get the money to move along it as quickly as possible.”

The big money in Parkinson’s research comes from pharmaceutical companies and unsurprisingly they tend to focus on new drugs. But Professor Wilkinson is also disappointed by the response of some of the big charities and philanthropic organisations which have turned down his applications for funds. “There appears to be a bit of a selection bias towards drug trials, because drug trials are often heralded as having the cure,” he says.

At least one drug exenatide, which was heralded as promising a cure, has failed after trials dating back 16 years, which must have cost huge sums. There are now plenty of innovative companies and researchers looking at ways of helping people with Parkinson’s that don’t involve drugs. Many of them still need to go through the regulatory process to prove that they work - but unless just a little of that cash pile funding drug trials is funnelled in their direction we won’t know.