Janet's plea to raise awareness
Volunteer Janet Roberts was at the heart of our latest campaign, on freezing – one of the most distressing yet least known symptoms of Parkinson's.
Imagine standing in the middle of a crushing rush hour crowd, frozen to the spot. No matter how hard you try, or will yourself, your feet simply will not move. People are pushing past, and no one hears your cries for help.
This sounds like a nightmare, but situations like this are a reality for so many people with Parkinson's, like Janet Roberts, volunteer at the West Hertfordshire branch and the star of our latest campaign on freezing.
A few years ago, I was getting off the Tube in London's Victoria Station. Because I often walk with a stick, I was wearing a rucksack to keep my hands free. I stepped off the train and stopped. I was completely stuck, my feet cemented in place. I was terrified the train doors would close on my bag and the train would depart, dragging me along the platform with it.
What I was experiencing was something called freezing – or what Parkinson's researchers technically call 'freezing of gait'. Freezing often happens to people with Parkinson's when something interrupts or gets in the way of a normal movement. It can get worse if you're feeling anxious, stressed or if you lose concentration.
As Parkinson's progresses, up to 80% of people with Parkinson's will develop freezing. Some people freeze during a repetitive movement like walking, writing or brushing their teeth. It takes different forms for everyone, but something everyone who freezes will tell you is that it can be terrifying.
And the problem is, it seems to happen at the worst times. It's rarely when you're safely seated on the sofa, it's always mid-motion. I've heard of people freezing in the middle of a zebra crossing, or at the top of a staircase, off balance.
While there are a number of methods that can help people with freezing (with some useful information available on the Parkinson's UK website) nothing is fail-safe. This is why people with Parkinson's need your help. sometimes just a friendly face or a reassuring word is enough to distract our brains so we can get moving again, or a helpful hand can get us out of a dangerous situation.
When I was glued to the Victoria line platform, it took ages for anyone to notice me. Everyone was too rushed, or simply thought I was being difficult. I kept saying "Can you help me, please?" but it wasn't until a little boy, about 8 years old, saw me and told his parents, that anybody stopped. He and his parents led me to the side of the platform, where I could sit down to recover, safely away from the train and the crowds.
I thanked them at the time, but I want to say to that little boy: "Thank you so much for being the only one to notice a person in dire straits."
I not only got the physical help I needed, but also the reassurance that there are people out there who want to help.
My plea to the public is that we all need to be more like that little boy. If you see someone struggling, don't assume it's none of your business, or that it would be awkward to offer your help. If the person is alright, they'll tell you. But if they're not, they might be terrified, and you could be a lifeline.
Watch Janet in action and find out more about freezing by watching our video.