Movers and Shakers: Drugs

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This week’s episode of the Movers and Shakers podcast is about the subject that always seems to open any conversation between two “Parkies” when they meet - drugs. “What are you on?”, we ask each other, sometimes extracting packets from our pockets or laying out a few tablets, like a couple of sad old hippies.

And indeed we start this episode by rattling our pills and listing their names. We are all on some kind of levodopa, the classic dopamine replacement drug, most of us also seem to be taking a dopamine agonist such as Ropinorole, Judge Nick “Sir Nicholas” Mostyn is very pleased with his Opicopone, and Gillian Lacey-Solymar tells us that a Venetian who turns up from time to time wearing a mask and a long cloak is one of the more pleasing side-effects of her medication.

But what we quickly realise is that our understanding of the drugs and how they work is sketchy at best. So we turn to our first guest Professor Ray Chaudhuri, who happens to be the judge’s doctor, for an explanation - why for instance do we not just take levodopa and other dopamine replacement drugs? “The problem,” he explains is that if you stay with levodopa, it leads to certain complications, excessive movements, for instance, dyskinesia, so we have to think about levodopa sparing strategies.”

These include dopamine agonists - so what are they and how do they differ from levodopa? “Levodopa has to be broken down by an enzyme within the brain to become dopamine, whereas agonists go directly on the receptors and produce dopamine.”

Ok, so why not forget the levodopa and just take the agonists? “Because they’re not as effective as levodopa - agonists work in the early stages of Parkinson’s but if you keep on it loses its efficacy over the years. So you need the levodopa to supplement the degeneration of dopamine that's happened.”

For weeks, Jeremy Paxman has been railing in our regular meetings about his drugs, their lack of effectiveness, and the general uselessness of the scientists who have failed to come up with anything new for 60 years. So we were hoping for the great inquisitor to subject Professor Chaudhuri to a bit of a going over. But he is disarmed by the Professor’s use of a brilliant tactic - he largely agrees with Jeremy!

“I think the biggest disservice we've done to Parkinson’s is by calling it a single disease.” He says it is such a complex and variable condition that treatment has to be tailored to the individual. “I think, fundamentally we the doctors need to understand, and the nurse specialists, that everyone has to have a personalised treatment programme. We do it for other conditions, we do it for multiple sclerosis, we do it for motor neurone disease, but we don't seem to do it for Parkinson's - you take dopamine, that's it.”

His career has been all about treating the non-motor symptoms of the condition - depression, anxiety, pain, sleeplessness - and that means exercise and diet should be stressed as much as drugs. He is also an advocate of wearable sensors - smartwatches - which can tell doctors how well a patient is responding to drugs rather than having to wait months or even years for the next consultation.

We also speak to specialist Parkinson’s pharmacist Stephanie Bancroft who makes a valid point about the importance of here profession to people like us: “We're there at the sharp end, we're seeing the patient more often than any other health care professional.” But she tells a familiar tale of hard-pressed pharmacists wanting to do more - for instance sorting dozens of pills into daily doses - but not having the time to get up to speed on Parkinson’s.

Over the course of this, the first series of Movers and Shakers (yes, the exciting news is that we’re already planning a second series) we have become increasingly aware that there are major deficiencies in the care of people with Parkinson’s. We also know that we are the privileged few, bolshy and prosperous enough to make a fuss if we are unhappy with the way we are being treated - but that does not apply to many of the 145,000 people. living with Parkinson’s in the UK.

If you have stories - good or bad - of how you have been treated or simply want to tell us what you think of the podcast do get in touch.

You can email us at feedback@moversandshakerspodcast.com

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