The Movers and Shakers are back in the pub and this week they're staring fear square in the eyes, and talking about a major fear: cognitive decline. What is the difference between Parkinsonian dementia and Alzheimer's? How does Parkinson's impact your chances of getting dementia? And when does forgetting your keys, or the neighbour's son's wife's surname, stop simply being a function of getting older? To answer all these questions, and provide practical tips for keeping the brain fit and healthy, the gang are joined by expert neurologist, Professor Rimona Weil.
By Podot
Each week Rory Cellan-Jones guides us between the laughs and moans in the pub. To read Rory's summary of this week's episode click here.
Guest Biography
Professor Rimona Weil
Rimona Weil is Professor of Neurology at University College London and an Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery. She leads a research programme that aims to understand how dementia happens in Parkinson’s. Alongside this, she leads a clinical service managing patients with Parkinson’s dementia and dementia with Lewy bodies. Her ultimate aim is to develop treatments to slow the progression of dementia in Parkinson’s. For more information click here.
Are you struggling with thinking and memory problems?
Thinking and memory problems are quite common in Parkinson’s, with dementia affecting nearly half of people with Parkinson’s within ten years’ of their diagnosis. Despite this, people working in the Parkinson’s community and people with Parkinson’s often avoid having discussions about dementia. It’s a difficult conversation and many are too worried to bring it up. There can also be a perception that there is no point talking about it, as nothing can be done about it. But this is not the case. There are changes that people can make earlier on that may reduce the risk of developing dementia. Once thinking and memory problems affect day-to-day life, there are treatments and actions that can make an important difference. Rimona talks about the benefits of keeping physically active and staying socially engaged in reducing the risks of dementia. She emphasises the benefits of discussing concerns about thinking and memory with your Parkinson’s specialist, so that they can review your medications, and consider treatments that can boost thinking and memory in Parkinson’s dementia. She also discusses the benefits of taking part in research into Parkinson’s, as a way of taking back control and being part of the solution.
She has developed some information booklets on thinking and memory changes in Parkinson’s, for people with Parkinson’s and for healthcare professionals, together with Parkinson’s UK, and supported by the Wellcome Trust. For more information click here.
Watch some behind the scenes footage of our Cognitive Decline episode being recorded...it's quite apt we think.
Watch Rimona Weil on: Improving how we talk about Parkinson’s dementia - University College London
If you would like to take part in Rimona’s research into Parkinson’s, you can contact her on rimona.weil@nhs.net.
Mark's Musings
I'd urge anyone with Parkinsons to take part in Rimona's study. I did.
It's not only helps with a great project with really important aims but in a weird way is quite fun. I first met Rimona and her team at the Parkinson's UK excellent awards and was intrigued by their research. So I booked myself in for the day long experience. An hour of this is taken up by an MRI scan on numerous bits of the brain. I kept falling asleep which isn't very helpful to them but it was quite restful for me. The only slight irritation is the number of times you are asked if you have any metal in your body -but it is fair enough : it would be embarrassing if a volunteer was ripped apart by the giant magnet. The rest of the time is taking up by cognitive tests of varying levels of difficulty from dead simple – ‘ what city are we in?’ to harder-that-you-would-think –“name as many animals beginning with B” Through to the really hard (for me) “ count backwards from 100 in units of 8”. Have a go and change the future,
If you would like to take part in Rimona’s research into Parkinson’s, you can contact her on rimona.weil@nhs.net
Why not give Gillian's "Brain Exercise" a go here...
All you need is a pen and a piece of paper.
Remember to pause the video in between so you don't hear the answers!
Some useful links
Just a little extra note...
If the charter and its wording provoked lengthy debate among us six I will leave it to your imagination what sort of conversations were having right now about the challenge from Caroline from PUK about what to do on April the 11th to promote the charter and promote the cause on world Parkinson's day. A plan is gradually coming together and I'll keep you updated but it almost certainly involves the six of us going to Westminster. It will not, repeat definitely NOT involve railings or chains but Gillian’s early suggestion of new words to the tune of 3 little maids from Mikado is a blinder (who should play Yum-Yum?) .
Poetry Corner - Gillian Lacey-Solymar
A LITTLE LIST
(for singing when chained to the railings of Downing Street)
As some day it may happen to you or even me
I've got a little list — I've got a little list
Of all the Parkie symptoms – those you can and cannot see
And they never would be missed — they never would be missed!
There's the stiffness and the shuffling and the dribbling as well
The pain if you have young onset - it really hurts like hell
Constipation and depression, not to mention lurid thoughts
You’d think this was an illness which somebody really ought
To move up all those league tables in search of a fine cure
But of that we cant’ be sure, we just cannot be sure
[Chorus]
They’ve got 'em on the list — they've got 'em on the list;
And they'll none of 'em be missed — they'll none of 'em be missed
So please could you get going as we have no time to waste
we really must insist, we cannot bear the list
our faces turn to masks and then you cannot see a trace
of torment we are in, don’t let that phase begin
and our voices must be heard before they get too weak to hear
night terrors should be tackled as they cause such awful fear
hallucinations haunt us in both darkness and strong sun
dystonia is awful, dyskinesia’s no fun
For too long we’ve been silent and we’ve been far too polite
That really isn’t right. We’re ready for a fight.
[Chorus]
They’ve got 'em on the list — they've got 'em on the list;
And they'll none of 'em be missed — they'll none of 'em be missed
So we’re guzzling down the dopamine in all its different forms
we’d so like to desist; we’re hooked on agonists
we used to be quite placid but now fighting is the norm
we really must insist. It’s such a horrid list.
and now we are becoming the agonists ourselves
out to raise awareness it’s the illness that compels
us to do something and that something won't be small
we’ve got a 5 point charter and we’re marching on Whitehall
but when we say we’re marching, that isn’t strictly true
I shuffle as do you. And that will have to do.
[Chorus]
They’re off to Downing street, they're off to Downing Street
And they will not be discreet, they will not be discreet.
If you liked this then GLS”s next suggestion for a lyrical overhaul is even better. Watch this space...
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