Living Well With Parkinson’s Day
Of all the questions I anticipated in the months planning for that day, having to describe non-motor symptoms in my very broken Tamil wasn’t one of them ...and yet it epitomised the challenge we face.
During one of the breaks, I was approached by an elderly Tamil lady and her carer daughter. Having deduced we had a shared origin, the daughter felt relaxed enough to share her experiences. She talked, with some emotion, of how her mother now rarely leaves the house. When I asked why, it turns out it wasn’t due to her impaired movement, but rather the embarrassment, the resignation, and the fear of being judged (particularly by her own community), that had led her to this solemn life at home. Sadly, it’s a common story.
By all accounts, anxiety had replaced her once charismatic nature. Depression and fear had replaced joy and hope.. and judging by the look in daughter’s eyes, it clearly had a rippling effect through the family.
A reminder that Parkinson’s doesn’t just impact one individual, it impacts all around them ...and in the case of Asian families, that can be many.
These barriers aren’t unique to south Asian communities. Feelings of dejection, loneliness and worrying what others think, cut across the entire Parkinson’s community.
Parkinson’s doesn’t discriminate in that way. But in cultures where feelings of family, community, and stoicism, are all deeply ingrained (in a way that’s not always healthy), those barriers can be amplified.
‘It’s the looking, pointing and not accepting differences that’s the problem’ she remarked. I don’t think she meant ‘pointing’ in the literal sense, but metaphorically that attitude certainly prevails.
In many Asian languages, Parkinson’s is still commonly referred to as the ‘shaking’ disease.
It took a generation for western cultures to move away from calling it the shaking disease and its preconceived notions. Why we persist in referring to it as a ‘movement disorder’ I do not know.
At best this language doesn’t do the condition justice. At worst, it fosters misconceptions.
I hope mother and daughter took some comfort the day and the shared experiences. From their kind words at the end, I think it did. Some touching feedback from others during and after the event, echoed the energy in the room. We should acknowledge for many, just ‘turning up’ is an achievement itself and should be applauded (believe me reaching out is easier said than done).
They were a minority in that sense too. There are so many more that suffer in silence. For a condition where state of mind, directly impacts state of body, that can’t be good.
For that ‘silent majority’ we need to do more. Rather than hope they reach out, we need to reach them. It’s in their interests, and ultimately, with the objective of growing and re-balancing the research population, it’s in all our interests.
Let’s rewind for some context.
There are so many remarkable things happening in the Parkinson’s community. It can be humbling to witness, yet it can also feel fragmented at times. Unintentional barriers exist between those ‘living with’ the condition (and I’m counting loved ones too) and those ‘working with’ it, in various guises.
Those barriers have consequences. Often it can lead to feelings of confusion, alienation, and even mistrust, all of which contribute to low levels of engagement. This impacts not only the individual’s wellbeing but also contributes to low levels of participation in research, which ultimately impacts us all (Covid showed us, successful research relies on numbers. Big numbers).
I was on a mission to prove the opposite is true as well: when the community comes together, cutting through those barriers, we can achieve so much more.
So it was a particular pleasure to host the recent ‘Living Well with Parkinson’s’ day in west London. It’s rare I find myself in a room with almost 100 people, all of whom have a connection with Parkinson’s.. but we managed to bring together people with the condition, their loved ones, a range of healthcare professionals, researchers, and local community organisations, to connect, learn from our shared experiences… and have some fun! 😊
The free event was ‘sold out’ well in advance of the day, reflecting the pumped up demand for in person events of this nature (this wasn’t a zoom kind of audience we were addressing). All were welcome ..but by choosing a West London location, just a few miles from where I grew up, we had the Asian community in mind, who are underrepresented in research.
4 in 10 with Parkinson’s hide their condition, the majority citing embarrassment as the reason. For young onset, that figure is 6 in 10. I’ve never seen a figure for the Asian community itself, but I bet you it’s even higher.
The idea for the day, was born from my involvement with the Parkinson’s UK Race Equality in Research initiative, the aim of which is to understand barriers and drive up participation from under represented communities, particularly from Black, Asian and Mixed heritage communities.
Even with its national network, Parkinson’s UK only reaches 1 in 4 people with Parkinson’s, through its advisor network and online activities. It’s ‘Research Services Network’, while growing rapidly in recent years, accounts for less than 5% of Parkinson’s population and non-white groups are particularly under-represented.
It became obvious to reach those, as of yet unreachable groups, we needed to combine with local community organisations with the required experience and local reach.
In stepped Integrated Neurology Services
I’ve been taking advantage of INS’s holistic approach to treating neurological conditions since 2020. I’ve been fortunate to access weekly exercise classes & 1 on 1 sessions with the neuro physio therapist and sign up for courses like Fatigue Management, Mindfullness and Taking Back Control, run by a neuro occupational therapist. I’ve also benefitted from their counselling services.
INS are proof, if any was needed, that holistic conditions really do benefit from a holistic care approach.
This led to my own contribution to INS, hosting an ongoing fortnightly ‘young persons group’ and taking part in their efforts to shape the future medical profession via talks to medical students at the local St. George’s university (giving the ‘patients perspective’). Both very rewarding activities, which I consider a form of therapy itself. Sharing experiences can be so powerful for all.
INS were the ready made partner for the event. Sarah and the team generously helped to organise, facilitate (through AgeUK they were able to offer a suitable venue) and deliver a fascinating series of presentations on the day.
The day itself flew by. Starting with a Parkinson’s Quiz (loaded with some trick questions designed to surprise and inform), followed by some personal accounts of living with Parkinson’s including my own story and a lively panel discussion.
Our special guest and celebrity chef Dipna Anand gave a moving account of her mothers own battle with Parkinson’s. She also kindly provided lunch for all, from her nearby award winning Brilliant Restaurant. It was so yummy!
The INS team talked about the range of non motor symptoms (often overlooked), the importance of exercise (a recurring theme of the day) and managing speech issues. They also showcased their creative therapy approach, through fellow INS client volunteer Jonnie (PwP), who gave a moving account of how he benefited from ‘giving back’.
Parkinson’s UK advisor, Ruhul took us through the wide range of support they offer and Alex & Becky took us through the latest from the research world, prompting some great contributions from the audience.
We rounded off the day by doing something we don’t do enough of… celebrating achievements of people with Parkinson’s. In a segment borrowed from our podcast 2 Parkies in a Pod, we celebrated:
Joe — for his amazing efforts in completing the London marathon while juggling a football !
Dave — for his remarkable achievement in raising over £0.5m through his sponsored walks !
Nenad — the remarkable story of a singer, who through taking up ping pong regained the ability to play the guitar and subsequently released a song about it !
It was a great way to round off the day.
Many thanks to Parkinson’s UK and INS in helping to organise this trial event. Thanks also to the numerous partner exhibitors we had on the day.
Lots of learnings still to digest, but the hope is this will become the template for a series of events up and down the country. There’s already a Yorkshire event being planned.
A great example of how collaboration and community can make a difference.
