Why the new advance in Parkinson’s treatment is exciting for sufferers like me
Rory Cellan-Jones, former BBC tech correspondent, gives his view on the new DBS implants
In January 2019, in a rather dingy room at St Mary’s Hospital in Paddington, a junior doctor told me that I had Parkinson’s disease. Or rather she informed me, in a rather matter of fact way, that I was showing symptoms of “Parkinsonism”; that it was an incurable degenerative disease and while medication could alleviate some of the symptoms, it could not halt or reverse its progress.
It wasn’t a big surprise. The previous summer I’d noticed my right foot dragging as I walked and a neurologist had written to the BBC suggesting I get a check-up after spotting my hand shaking in a report for the Breakfast programme. And compared with learning 14 years earlier that I had a malignant melanoma behind my left eye, Parkinson’s seemed less frightening and less urgent to confront.
But that was not how friends and colleagues saw it. They were extremely sympathetic and shocked – and in some cases I almost felt I had to comfort them, rather than vice versa. And from a few who were quite knowledgeable about Parkinson’s came a question: are you going to try deep brain stimulation (DBS)?
This fairly serious surgical procedure involves inserting a device into the brain which sends electrical impulses to specific areas in an attempt to control tremors and other symptoms of the disease. It is only advised when medication is no longer working or is having severe side effects. There’s also a 1 per cent chance of the patient suffering a brain haemorrhage.
No, I would reply politely to this question while thinking privately “are you bonkers? Why would I agree to this Frankenstein operation when my symptoms aren’t that serious and I’m only just starting on medication?” In any case, 25 years after it was first approved by regulators, DBS remains a fringe treatment, available to fewer than 5 per cent of people with Parkinson’s in the UK.
Three years on from my diagnosis, my symptoms ptoms have worsened slightly. I’ve had back pain in recent weeks, ks, which my physiotherapist says ys is just a bog-standard slipped ped disc but may have been n brought on by walking king long distances with h my awkward Parkinson’s on’s gait. I also have severe insomnia.
I still don’t feel ready to have a surgeon drill into my brain. Nevertheless, ss, I was excited to hear ar about a trial in Bristol stol that could make the he procedure simpler r and therefore more widely dely available. I have made ade it my business, both before and after I retired from the BBC last October, ber, to understand and write rite about advances in healthcare technology – with, of course, a particular interest in anything that relates to Parkinson’s.
The trial involves the world’s smallest DBS device and is taking place at Southmead Hospital. Up until now, the operation has involved a battery being implanted in the chest with wires running up under the skin to the brain. But the Picostim DBS system is about a third the size of existing devices, meaning the battery can be implanted directly into the skull; making the whole procedure much simpler and less of an ordeal.
The plan is for up to 25 people to take part in the t trial, which aims to discover whe whether the Picostim device is bo both effective and safe. The early signs si are positive, The first patien patient, Tony, had his device implanted i in November 2020. His Parkinson’s had been diagnosed nine years ag ago when, rather like me, he had little more than a tremor in his right hand. But over the y years, simple daily activities got ever harder, with tying his shoelaces taking three or four minutes.
He wa was surprised to wake up from surgery and not feel any pai pain. “I had the operation on a We Wednesday and went home o on Thursday afternoon. I felt ti tired but I still had no pain. T The impact has been amazin amazing,” he says.
“I ca can now walk two miles or mor more, whereas before DBS, I could get about 200 yards t then I would have to rest,” h he continues. “I am playing golf, not as well as I used to, but that’s probably down to old age catching up; but at least I’m back.” A video of Tony taken before and after the operation appears to confirm a dramatic improvement in his symptoms.
The consultant neurologist on the trial, Dr Alan Whone, stresses this is not a radical new treatment but a way of bringing to more people what he describes, along with the drug L-DOPA, as one of “the two quantum movements in the treatment of the symptoms of Parkinson’s.”
With the first six patients on the trial, the time spent in the operating theatre was just three hours each, compared to eight for the conventional DBS system. That means the procedure
What we have in common is hope, and the efforts of brilliant scientists
could be a lot cheaper and, rather than fewer than 5 per cent “you might open that up to 7 per cent or 8 per cent of the Parkinson’s population.”
But Whone is cautious about promising too much, perhaps for fear of another disappointment akin to the previous GDNF trial he ran – an innovative project, which involved pumping drugs directly into the brain.
It provoked huge excitement in the Parkinson’s community with trialists saying they experienced dramatic improvements. But in 2019 it ended in failure, with no appreciable difference between those given the drug and those given a placebo.
I met the neurologist earlier this year at another experiment in Bristol. In a terraced house packed with sensors, Whone and his team observed people with the condition who came to stay for five days – a kind of Parkinson’s Big Brother programme.
The idea is to develop technology that might be installed in the homes of drug trial participants for a year or more to get a far more granular measurement of their condition. One big problem with Parkinson’s disease is that the way of measuring symptoms, such as a tremor or stiffness of the limbs, is pretty crude, so it is hard to say whether they have worsened or improved in response to a new treatment.
Over the past three years I’ve taken every opportunity to get involved in Parkinson’s research myself, participating in a trial aimed at developing a wearable device that would use AI to detect the disease, and watching a dissection at the Parkinson’s Brain Bank at London’s Hammersmith Hospital where I signed up to leave my own brain for research.
I’ve also learned a lot from meeting and comparing notes with other “Parkies”, from Vicar of Dibley cowriter Paul Mayhew-Archer to quiz supremo Paul Sinha and High Court judge Sir Nicholas Mostyn, currently on a sponsored cycle to Amsterdam for the Cure Parkinson’s charity.
Even more inspiring has been interviewing people such as Emma Lawton, diagnosed with young-onset Parkinson’s a decade ago aged just 29, quite severely affected by the condition yet fiercely determined to fulfil her dream of starting her own events firm.
What we have in common is a combination of hope that all the efforts of brilliant scientists will produce some miracle drug, combined with a nagging fear that it will arrive too late for us.
Whone recognises that frustration as people look for something to cure the disease or simply to slow it down. “There are things coming through – everybody says ‘five years’ and I suspect people with Parkinson’s get completely fed up with it,” he says. “But I think it is possible that something will come through that is disease modifying in the next five to 10 years.”
Fingers crossed. And in the meantime the only option is to retain your sense of humour. I tell old colleagues when we meet for a drink that I am still prepared to stagger to the bar to buy a round – but if they want a full pint they had better choose the glass I’m carrying in my left rather than my shaking right one.