I joined the charity in 2018 and embarked on a very steep learning curve, with lot to do and a lot of people to meet.
Many barriers, like access to transport, cost of sessions and a lack of trained and condition-aware activity providers, are common across the sector and the wider population.
But after one person with Parkinson’s described the condition as "like having permanent jet lag, alongside tremors, freezing, falling, anxiety and depression", you begin to understand that it’s not just as simple as helping someone get to a gym.
It’s fair to say that back in 2018 our understanding of the benefits of being active was limited (to say the least).
As a charity we supported a lot of local activity sessions but we lacked a strategic approach, resources and dedicated staff.
Fast forward to 2024 and thankfully, we’re seeing a very different picture.
Get active, stay active
Physical activity and our ‘Get Active Stay Active’ strategy is a priority for the charity. We wrote a strategy to elevate our delivery from regional to national, and united colleagues from across the charity, healthcare and activity professions and the Parkinson’s community.
We have a dedicated physical activity staff team, a UK-wide grants programme, support for innovative partner-led pilots, education and training for providers, and a wide range of new guides, booklets, courses, videos and support for the collective Parkinson’s community.
Support from Sport England has been at the centre of this development and allowed us to put this new strategy into practice, translating the needs of the Parkinson’s community into on-the-ground delivery.
From that original small pilot project called 'Parkinson’s Power', we managed to demonstrate not only the value of our work, but its potential.
With enthusiastic support from our CEO Caroline Rassell and chair Gary Shaughnessy, by 2023 Get Active Stay Active was born.
Research into the benefits of being active with the condition has also accelerated.
Why movement helps people with Parkinson's
The benefits of being active are widely known, but for people with Parkinson’s movement can slow down both the progression of symptoms and the medication intake.
But we also know that individuals' relationship with exercise is different, so we focus on providing options for everyone, so they can choose between being active alone, in groups, at home or at organised sessions.
As a charity we lead the way in funding and supporting research to find a cure and develop new treatments, but we also know how important it is to help people right now, moving beyond a strategy and delivering for the people we represent.
Get Active Stay Active funds hundreds of physical activity projects around the country, including supporting individual providers, local authorities, active partnerships and prominent sports clubs like Leeds Rhinos or Arsenal FC.
We’ve secured free gym memberships and activity sessions for people with Parkinson’s and their carers, and trained and educated hundreds of activity providers, leisure centre staff and volunteers, so people with Parkinson’s can go to the gym, play table tennis, swim, take part in walking football or dance.
They are supported by trained providers who, through their expertise, help people with the condition stay at work, tie shoelaces, sleep better and steadily hold a cup of tea.
It also increases understanding about the need for moderate to vigorous intensity, the value of varied exercise and the benefits outdoors activity and with other people.
