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The cyclist diagnosed with Parkinson's Disease who is inspiring others to ride
Viv Mackay is one of life’s joiners.
She is a member of numerous political and activist groups and used to be an active trade union official.
So it is not particularly surprising that her love of cycling led her to set up a cycling group, an event and, more recently, become an ambassador for women’s cycling.
And given her seemingly boundless energy, perhaps it isn’t surprising that she has done her best not to let Parkinson’s disease stop her from doing what she loves – cycling.
The 64-year-old from Braishfield near Romsey, started to have difficulty on her bike a few years ago.
A keen cyclist since her 20s – although, she says, never a fast one – she began to struggle and lose confidence on two wheels.
She became wobbly when giving signals, had trouble getting the bike going, especially on hills and says that when she had to cycle between bollards she couldn’t be sure she wasn’t going to go into one of them.
“It got harder and harder,”
“I didn’t actually fall off but I started to feel unsafe on my bike, which was strange having been cycling for such a long time.”
At the same time, she began to feel increasingly tired and developed problems writing.
Doctors diagnosed a problem with a nerve in her arm, which was operated on in December 2008 but her problems persisted.
Eventually, in October 2010, she was diagnosed with Parkinson’s disease.
Parkinson’s disease is a progressive, neurodegenerative disease that belongs to the group of conditions called motor system disorders. It cannot yet be cured and sufferers get worse over time as the normal bodily functions, including breathing, balance, movement and heart function worsen.
“I remember distinctly how I felt,” says Viv of the diagnosis, adding that it is still upsetting to talk about it.
“It was the way I think a lot of people feel – shock but also a degree of relief that there was an explanation for what I was feeling. It wasn’t just something to do with my behaviour that I could change.”
Viv began researching the disease and realised how she had to deal with it.
“I pretty well decided within a matter of a few days that I was going to carry on doing what I wanted to do, no matter what it took,” she says. She adds that it wasn’t a case of her being brave and fighting the disease.
“Actually you really don’t have a choice,” she says.
“What’s the other option? To give in and do nothing and get worse much more quickly.
“I’ve decided I’m going to darn well do what I can do to stay on top of it, which is basically cycling and exercising. Although you could say I’m fighting it, I recognise that it’s a degenerative disease, and you can’t win. You can just try to modify it.”
One of the things that Viv has done is giving up her much loved bike – a heartbreaking decision – replacing it with a recumbent tricycle.
At first she says she found it upsetting going out on the same routes she used to cycle on her old bike. But now she focuses not on what she can’t do, but on what she can.
In fact, she spends more time cycling now than ever, still clocking up impressive distances – recently she rode from her home near Romey to Southampton for the Sky Ride and back, doing a couple of laps of the course while she was there.
She was never a fast cyclist – this was the reason she and a friend set up the Hares and Tortoises cycling group in Romsey, for easy rides.
And she has become slower, although she isn’t sure how much this is to do with Parkinson’s disease and how much is because her tricycle weighs 50 per cent more than her old bike.
But she is still determined.
She still leads bike rides, although she notes she tends to be leading them from the back.
And in 2011 she became a Breeze Champion – part of a British Cycling campaign to recruit a million more women to cycle by 2020.
She says she had three reasons for this – to be trained in leading rides, to recruit more cyclists for local clubs and to find people to ride with. She has always enjoyed cycling in a group and being able to chat with people, which is hard to do when everyone is speeding past you.
“I’m getting slower and I needed to find people to ride like me. What better way of doing it than getting people round me who aren’t very good?” she says.
As well as her tricycle, Viv and her husband have a tandem which has a recumbent seat at the front for Viv, to allow them to go on longer rides together.
Viv decided soon after her Parkinson’s diagnosis that she wasn’t going to take medication, as she was concerned about potential side-effects. She says that by to cycle she is proving to herself that she can do it.
“I tend to be very open about having Parkinson’s disease, in order to prove to people that you can still do things,” she says.
But she adds that the most important thing is proving to herself that she can still get out and ride.
“I’m alright, really,” she says.
“I wouldn’t say there’s nothing wrong with me but I’m managing, and I’m managing quite well, so I do feel proud of myself. Part of that pride is showing myself that I can not have to take the medication.
“Really, I’m showing myself that I can do this. I’m not showing it to other people – I’m showing me.”
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