It was wonderful to see so many of you at our first open meeting via Zoom. This is just a quick update re: discussions and how we’ve followed-up.
After a few introductions, we discussed whether the group needed a social media presence. There was a mixed response (some prefer Facebook, some Twitter, some neither!). We agreed that Facebook was most used, and Twitter has its uses. But, we’ll also make sure that important information is communicated here on the website and via email.
Our Facebook and Twitter groups are now ready to use, and you can join via the buttons on the top right of this page.
2. The main discussion was around the format of the online event planned for Friday May 14th. The group are really keen for the event to happen, and think there will be a lot of interest in attending across the region and beyond.
However, in my enthusiasm to showcase some of the brilliant research going on in universities and NHS trusts across the North West, I had planned a too-full schedule. Instead, many in the group felt the launch event should focus on one or two speakers, with plenty of time for Q&A. This makes a lot of sense to me (I’m now well accustomed to screen fatigue), and we’ve re-thought the event along those lines.
I will send out a poster to advertise the event when we’ve finalised the speakers.
3. We had a few offers from members who would like to contribute to the group by writing blogs, speaking about their experiences at meetings, and even running online dance taster sessions! We’re really grateful for all these responses, and please do feel free to get in touch if you’d like to get involved too.
4. Finally, it was stressed that our group should focus on making sure there are opportunities for people with Parkinson’s to be involved in research from the earliest stages. We’re very lucky to have some experts on Patient and Public Involvement among us, and we were happy to hear they’re keen to share their ideas at future meetings.
As always, please feel free to contact me: firstname.lastname@example.org if you have any thoughts
Paul Mayhew-Archer is a British writer (The Vicar of Dibley), producer, script editor and actor. He recently wrote a documentary called “Parkinson’s: The funny side”, which made us laugh. We thought you’d enjoy it too. It is available on iPlayer (search for Parkinson’s: The Funny Side), and can be viewed here along with other short films about Parkinson’s. ‘The Funny Side’ starts at 46 m 45 s.
In the documentary, Mayhew-Archer takes us to the University of Oxford’s Department of Anatomy and Physiology, where research is being undertaken to develop a phone app that can diagnose Parkinson’s using voice recordings.
He also tells us about exciting new research, funded by Parkinson’s UK, that’s identifying new targets for treatment. You can hear more about this research from the principle investigator, Professor Richard Wade Martins.
Running out of quiz questions for your Zoom meet-ups with friends and family? Fear not, we’ve put together some entertaining quiz rounds to keep you going.
If you’re able, we’d love it if you made a donation to Parkinson’s UK, who are providing critical support throughout the Covid-19 crisis. If you’re not in a position to give at this time however, that’s fine too; quiz on!
We dragged some children (kicking and screaming from their homeschooling lessons) into re-enacting some classic movie scenes for us. Can you name the movie titles?
Due to highly iconic instant-give-away theme tunes in some of the movies, some of the the clips – such as the first one – don’t have any sound. Others do however, so make sure you click “share computer sound” if you’re hosting the quiz via Zoom.
Question 1: Name that movie
Question 2: Also, name that movie
Question 3: You get the picture…
Round one complete! If you’re the quiz master, now is a good time to stop sharing your screen. The answers and bonus questions can be accessed via the Get The Answers button bellow.
Humans long ago made the evolutionary leap from walking on four legs to walking on two. As far as not-falling-over is concerned, this adaptation was a strange one. There’s a reason chairs tend to have, at the least, four legs.
Very few other mammals have gone the two-legged route: kangaroos spring to mind (sorry), but they benefit from a stabilising tail and clown-shoe-sized feet. Plus, they usually walk around as pentapeds (i.e. using all four legs and their tail). I’ve never tried to push a kangaroo over, but I’m guessing I’d be unsuccessful if I gave it a go. You, on the other hand, I could topple right over, if I timed it just right and gave you a vindictive enough of a shove.
To make matters worse, humans walk by balancing on one foot while swinging the other one forward. Paleoanthropologist John Napier describes walking as “a unique activity during which the body, step by step, teeters on the edge of catastrophe”. It’s a frankly ridiculous way to get around.
Movement scientists describe walking as controlled forward falling. We propel ourselves forwards – precariously – and then we swing out our other leg to avoid catastrophe. And then repeat, repeat, repeat, until we get to where we need to be. Just as in life, walking involves venturing towards an uncertain future in the hope that we arrive safely. Sometimes, however, we find ourselves arse-over-tit on the pavement.
There is, of course, a method to this human madness. Walking and standing on our hind legs opened up new opportunities for our ancestors. With our forelimbs freed up, they could use their hands for touch, exploration, tool-making and Googling how to make fires.
Modern-day humans continue to compensate for our ancestor’s sacrifice of stability in favour of constant access to skillful, handy hands. Staying upright in the outside world – with its kerbs, uneven paving stones and discarded banana skins – requires mind-boggling levels of neural computation to integrate multiple sensory inputs from the eyes, inner ear, and internal position sensors. All these inputs must then be transformed into accurate commands to our joints and muscles to maintain posture and allow purposeful locomotion.
Advancing age and neurodegenerative conditions such as Parkinson’s disease reduce the fidelity of these computations. It’s no surprise, then, that falls are common amongst older people and those with Parkinson’s disease. In fact, falls are the leading cause of death from injury in the over 65s. Non-fatal falls cost the NHS more than £2bn and four million bed days a year. Moreover, falls can be life-changing. They can make the difference between living well in your own home for the rest of your life, or losing your independence entirely.
The good news is that there are things older people can do to mitigate their risk of falling. Studies show that staying active and physically strong is highly effective in preventing falls. As is maintaining connection to social networks. It’s unfortunate that the current nationwide lockdown precludes older people from doing much of either.
For now, charities such as Age UK and Parkinson’s UK are providing continual online content and advice to help people stay active in their homes. Parkinson’s UK are also posting frequent home-based exercise videos to keep people active to their YouTube channel, and The Cure Parkinson’s Trust continue in their search for disease-modifying interventions.
To try to understand what people’s needs will be when life starts to return to normal (whatever that may be), my lab at Manchester Metropolitan University has recently launched a study on the impact that the lockdown is having on falls experienced by older people, and people with Parkinson’s disease.