Today, 11th April, is World Parkinson’s Day. On the face of it, that title doesn’t tell you a lot, does it? But that’s not dissimilar to the condition, Parkinson’s, itself: while there are well-known and apparent symptoms, it’s impossible to know, from the outside, what any given day in the life of a person with Parkinson’s is truly like. That’s what we’re striving to raise awareness of today.
Last week, Parkinson’s UK conducted research revealing that British adults massively underestimate how complex Parkinson’s is. Although most people are aware of visible symptoms like tremor, Parkinson’s can also come with more than 40 less well-known symptoms such as sleep issues, anxiety and hallucinations.
More than a third (37 per cent) thought there were fewer than ten symptoms of Parkinson’s and more than four in ten (41 per cent) thought there were fewer than 30.
The public think the main symptom of Parkinson’s is a tremor (64 per cent), followed by slowness of movement (14 per cent) and muscle stiffness (13 percent) – but these are merely the tip of the iceberg. In fact, in one of our recent projects to identify priorities for improving everyday life, tremor came 26th on a list of what people with Parkinson’s want research to address.
Physical symptoms include freezing – a terrifying symptom that can cause, without warning, a person to lose the ability to move, sometimes mid-step. We work with a woman called Janet who once experienced this while getting off a crowded London tube train. Unable to move away from the crowd or the departing train, she was terrified. Luckily, a little boy noticed and alerted his parents, who helped her.
There are hidden symptoms too. Many people lose their senses of smell and taste. Some experience severe swallowing difficulties, making eating and drinking a struggle. Others experience depression and anxiety.
The severity and impact of any symptom varies from one person to the next, but people with Parkinson’s often tell us that some of the most difficult symptoms are the ones most easily misunderstood: we know that one in four people have had their Parkinson’s confused for drunkenness.
Too often, people are mistreated because of their condition. Just last week, the media highlighted a grandfather who was thrown off a bus because the bus driver thought he took too long to get his pass out of his coat. Another man with Parkinson’s, earlier this year, was ejected from a Halford’s for “walking funny”.
We offer awareness training to businesses and staff, giving people a better understanding of Parkinson’s and the ways they can support customers or colleagues with the condition – which, we’re pleased to say, a number of businesses, including Transport for London and Gatwick Airport, have taken on. Parkinson’s UK has also launched a petition to call on all businesses to roll out Parkinson’s awareness training.
But we won’t stop there: businesses getting on board will help, but we need the general public to spread the word. Share our World Parkinson’s Day video today. Find out more about Parkinson’s. This condition is projected to rise by a fifth by 2025: help us change that statistic by helping us carry out vital research into better treatments and a cure – you don’t have to have Parkinson’s to take part.
Together, we can all help bring about the day when no one needs to fear Parkinson’s.