Living with Parkinson’s

DID you know that every hour in the UK, two people are diagnosed with Parkinson’s? That includes younger adults – and they don’t always have the tell-tale tremor. There’s no cure and Parkinson’s is progressive, but treatments can help, and charities like Parkinson’s UK are fighting to improve this. We asked two people living with Parkinson’s to share what they want everyone to know...

1. IT DOESN’T JUST AFFECT OLDER PEOPLE

“I was 46 when I was diagnosed,” says Sarah Sykes, a careers advisor from Rotherham. “According to the NHS, one in 20 people with the condition first experience symptoms before the age of 40.”

2. IT’S NOT ALL ABOUT TREMORS

“When I got diagnosed, all I could think of was somebody shaking – that’s the image that went straight to my head,” Sykes admits. John Hinson, 59, from Hull, says a reaction he frequently gets when he tells people he’s got Parkinson’s, is: “Oh, you can’t tell, because you don’t shake.”

3. DIAGNOSIS CAN BE A SHOCK

Sykes experienced symptoms for a few years before eventually going for tests and it was a “shock” to discover it was Parkinson’s. “For a couple of years, I’d been walking with a limp. My colleagues had said to me, ‘You’ve got a limp’, and then my handwriting started getting smaller, and I had a frozen shoulder a few times,” Sykes recalls.

4. IT AFFECTS MENTAL HEALTH TOO

“Depression and anxiety are a main feature of the condition as well,” says Hinson. In fact, depression can sometimes be one of the earliest symptoms people notice, alongside physical signs. It can bring additional emotional and psychological challenges too, particularly due to worries about it progressing and the impact that may have.

5. THE FATIGUE IS REAL

Fatigue isn’t ‘normal’ tiredness people can push through – it’s a very real symptom that can be overwhelming. “I get very tired very quickly,” says Sykes. “My neurologist said, ‘Your brain is working harder than everybody else’s brain’. Fatigue is definitely a part of it.”

6. SOME PEOPLE WITH PARKINSON’S CAN STILL WORK

Having supportive employers can make a world of difference, as people may need some adjustments. “My employer has been fantastic,” says Sykes. “They’ve let me change my hours, so I do less.”

7. THERE ARE REASONS TO BE HOPEFUL

“There are reasons to be hopeful. Medication has made my life a more manageable. I can handwrite now – I couldn’t do that before – and my walking is better,” says Sykes.