Parky Profiles: Emma Lawton

How do you cope with Parkinson's at 29?

You might think the life story of a young woman diagnosed with Parkinson’s at the age of 29 would be a depressing listen. But tune in to this week’s episode of Movers and Shakers and I defy you not to be cheered up and invigorated by the sheer positivity of Emma Lawton, the subject of our latest Parky Profile.

Emma was enjoying a successful career as a designer at a London creative agency when she was diagnosed with Parkinson’s. She knew very little about the condition - -“who gets Parkinson’s at 29?” - except her agency happened to have a contract with Parkinson’s UK. She had assumed that the aches and pains she was feeling was a trapped nerve or something like carpal tunnel syndrome, an occupational hazard for people doing creative work on computers.

Although the news was of course a terrible shock, there was also some relief because Emma had been told it could be either Wilson's or Huntington's, two neurodegenerative diseases which are far more life shortening. “I read about Parkinson's and realised that it wasn't going to kill me, that I could live with it…”

Jeremy Paxman and Emma Lawton

Jeremy Paxman says that it is young onset Parkinson’s that he finds most depressing and he wonders how Emma copes. “The thing that I can't change is having Parkinson's,” she says “but I can change how it makes me feel. I can change what I let it get away with. I can change my reaction to it.’

After her diagnosis she had retreated to her parents’ home in a quiet Bedfordshire village but soon realised that she was cutting herself off from the life she had enjoyed previously. 

“One day, I was sitting in my parents’ house, and I just suddenly thought to myself, I'm actually stopping myself from doing things because I'm not going out with my friends anymore. It's not Parkinson's, it's actually me that's in my own way..”

So she went back to London and life started again. “All my friends just treated me exactly the same way as they did before - they took the mick out of me, they joked about me.” At first work was fine - before her diagnosis she had been promoted to a creative director role with less hands on involvement. She also got involved in a TV project, working with a Microsoft researcher to create a wearable device to deal with the impact of her tremor. “It vibrated into my wrist at such a frequency that I was able to write and draw in a way I couldn’t do before.”

Then various things began to go wrong. Her boss decided the creative agency no longer needed a design team so Emma and her colleagues were made redundant. After the documentary about the anti-tremor device was broadcast, Emma worked with Microsoft to develop it further. But, as it became apparent that the gadget might have to be fine-tuned to work with each individual user, the project lost momentum and was eventually shelved by the tech giant.

Still, Emma was undaunted, trying her hand at stand-up comedy, giving keynote talks at conferences, even starting her own events company. But then her body struck back. The muscles in her neck seemed to waste away making it ever more difficult for her to hold her head up. When I first met her a couple of years ago on a video call, it seemed to be a tremendous effort for her even to twist her head around so that she could look me in the eye. She says that the worst thing about this contortion of her body leaving her staring at the ground was how she was seen by strangers:

“When I was walking along, I'd be in a shopping centre or something, and people would stare at me, and I wouldn't see the staring, but my friends would, so I think it affected them a lot more than it affected me.”

Her doctors, who weren’t even sure this was connected to Parkinson’s, tried everything from Botox to new drugs without success. Then last year two Italian surgeons conducted a lengthy operation on her spine, implanting 30 titanium screws, two rods and two wedges to straighten her up again. Emma describes the surgeons as “two guys on white horses” because they were the only ones who dared to go ahead with such an operation - then again, she was warned that if things went wrong there was the risk of paralysis or even death.

But it worked a treat, at least for about eight months. Then Emma’s acute dystonia, the muscle spasms which are one of the nastier Parkinson’s symptoms, started to jerk some of the metalwork out of position. She may have to undergo more surgery, but she is still in a far better place than she was before the operation - able to look us each in the eye during our conversation:

“I wanted to make eye contact again, because I was sick of not making eye contact. It's just awful because everyone talks over your head, and you can't make connections with people.”

And she reflects on how her condition brings out the best and worst in people, remembering an incident at a bus stop when she sat on the floor crying during a painful attack of dystonia. A woman at the stop just ignored her but a female bus driver somehow saw she was in distress, stopped and turfed all her passengers off before coming to help. “She let me sit on her bus…it was her first week, and she didn't get sacked.”

Sometimes, she says, she gets asked whther she really is as positive a person as she seems: “And I say, well yes, because it's been 11 years, how would I fake positivity for 11 years? I'd be some kind of psychopath. But I still feel like I'm lucky in a lot of ways.”

And by the end of our conversation we also feel a little bit lucky - after all but for Parkinson’s, we would never have met the inspiring Emma Lawton.