Diagnosed with Parkinson’s at 30 – behind a life-changing moment

Learning to cope. Toni Blay, CC BY-NC-ND

Billy Connolly picked up a special recognition award at the recent National Television Awards for 50 years in the entertainment industry – but it was the effects of the comedian’s illness that shaped the headlines.

Journalists noted his “slow, shuffling steps”, and “weakened left arm”. Connolly, 73, explained that his emotional response to the award was also a symptom of Parkinson’s. In truth, one of the reasons that the disease is so hard to diagnose is that its effects can mimic the slow progress of old age. Survey after survey shows that many people view Parkinson’s as a relatively trivial disorder, “the cause of a bit of tremor in elderly folks.”

But what of young people diagnosed with Parkinson’s? As part of my PhD I’ve been investigating those living with Parkinson’s, participants diagnosed with Young Onset Parkinson’s (under the age of 50) spoke openly about the burden of this stereotype.

Diagnosed in his thirties, Oliver (all participants’ names are pseudonyms) explained that “the loss of dopamine in my brain is affecting me the same way as getting old, except for the fact I’m not old.”

Although not yet “shuffling” he commented that “my gait is getting quite strange … I know people think I’m drunk”. He also freezes. It might be his whole body, his feet, or his fingers: “I put my hand in my pocket and I just can’t get it out.”

Fitting in

It is a curious challenge to live with a disease for which you are in the “wrong” demographic. Back to the Future actor Michael J Fox was diagnosed with the condition at 29 but didn’t go public with it until he was 37. His high-profile struggle has raised awareness, but younger sufferers like Oliver still have to face the incredulity of others:

Another symptom is speaking quietly. I mumble a lot … so I tend to tell people I have Parkinson’s when they say: ‘I can’t hear what you’re saying.’ The common response is: ‘You aren’t old and you don’t shake.’

For Oliver, this is tantamount to a social denial of his illness.

Yet Parkinson’s is so much more than the visible symptoms. With it can come sleep disturbance, lethargy, depression, severe anxiety, hallucinations, insomnia, and constipation. People can also be affected by sexual dysfunction, a loss of sense of smell, a loss of concentration, a loss of confidence, fatigue and pain. No one person suffers from the same cluster of symptoms and, as the disease evolves, symptoms may intensify or new ones emerge.

This is a daunting prospect at any age. Asked how he was managing his illness, Connolly offered up the simple truth: “It’s managing me.” But for those in the prime of life it brings huge challenges at a time when people are juggling a career, a young family, and caring for elderly parents. Far from trivial, Parkinson’s can result in feelings of loss and social isolation. For Steve, diagnosed in his early forties, the consequences have been grave. He lost his wife (“she couldn’t cope”), his job (“it’s robbed me of my writing, my confidence, taken my job away”) and his independence (“I was falling over all the time.”)

Time for a cure

People still struggle to accept that younger people can be afflicted by Parkinson’s, even though it is estimated that in Europe alone, one in ten diagnoses are in patients under the age of 50. And youth doesn’t simply spark a form of social denial. People like Oliver also face the expectation that, with recent advances in medical research, a remedy is imminent. As he says: “You get a lot of people who want to cure you.”

The younger you are, the more desperate others are to imagine a brighter future for you. Oliver is told that stem cell research will triumph; Caitlin, diagnosed in her twenties, has been told about a “wonderful new surgery” that can offer a complete cure. But it is a cruel hope. Caitlin is referring to Deep Brain Stimulation (DBS) which is suitable only for some people with Parkinson’s, and is neither a cure, nor without risk.

A complex disease defies ‘cures’. Matt Chan/Flickr, CC BY-NC-ND

To Oliver, talk of a cure allows people to sweep his illness under the carpet. Caitlin is also having to cope with the fact that the drugs she has been prescribed have not enabled her to go back into paid work, and feels the need to justify her own illness experience:

I have to say, ‘well, you know, it’s not quite like that.’ You know, like the drugs, it [DBS] wears off after a period of time and it can have serious side effects …

Zoe, diagnosed in her twenties, addresses the fact that current drug treatments are of limited efficacy. Naturally, she is anxious: “I’m so young in getting Parkinson’s, what happens when they stop working?”

Coping strategies

Billy Connolly wanted hope. REUTERS/Luke MacGregor

And just as friends and colleagues are in danger of offering false hope, so doctors run the risk of removing it altogether. Connolly told reporters that there was no sugar coating for the crushing “incurable” diagnosis he received. He wanted his doctor to “leave me a little light on in the corner for Christ’s sake”.

Offering hope through talk of a cure is doubtless done with the best of intentions, but we should exercise caution. Remember that every time the word cure is mentioned, it requires the ill person to recover a former image of themselves. It faces people with the uncertainty of their future and highlights the degree to which their lives have been irrevocably changed by their illness. Instead of offering solutions, listening attentively might be the best we can offer. And it might just be the means of leaving that little light on in the corner.