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Monday, June 20, 2016

What it's like to have Parkinson's at 32

June 20, 2016
By Emma Lawton


Emma Lawton, who was diagnosed with Parkinson's at 29

The news of Muhammad Ali’s death recently felt like a punch to the heart. It rocked me. But why, as a woman who had never followed his career and knew little of him beyond his legend status, would this leave me reeling so badly?

Three years ago, at the age of 29, I was diagnosed with Parkinson’s. The disease that was Ali’s toughest opponent for 31 years is also mine. That’s my only connection to him – but his death makes me question my future and how long my own fight will last.
My initial reaction was relief that I wasn’t going to die
My diagnosis came after struggling with a strange numb, stiff feeling in my right arm for a year. Work colleagues called my limb “The Claw” because it was rigid and didn’t move easily. Like most other young people with busy lives and demanding jobs – I’m a creative director at a web agency – I had been hoping the problem would go away. My parents were concerned, so after a family friend asked: “What’s wrong with your arm?” in front of them at my father’s 60th birthday party, I agreed to see a doctor to ease their fears. I was thinking it was carpal tunnel syndrome or a trapped nerve. But the doctor was worried that I didn’t swing my arm when I walked and sent me for brain scans. I began to realise it could be serious. 
A few weeks later, I saw a consultant, who told me that the scans showed I was in the early stages of Parkinson’s.
I had taken my parents with me, and I think the diagnosis hit them harder than it did me. My father asked questions about treatments. My mother went into battle mode and helped me work out how to process the news. I had been warned I might have Parkinson’s and had spent time researching the condition. In fact, my initial reaction was relief that I wasn’t going to die.
Parkinson’s is a progressive neurological condition caused by loss of cells in the brain, resulting in a reduction in dopamine, the chemical essential to muscle control, balance and emotional health. The disease typically causes a tremor and slow, stiff movement.
In the UK, 127,000 people are living with Parkinson’s and only one in 100 is under 40. Men with the condition outnumber women almost 2:1.
My diagnosis was a huge shock. Almost overnight I went from a normal person in their 20s, whose biggest decision most days was where to buy lunch, to having to make choices about medication and getting my head around how I was going to live with this condition.
I was told there is no cure for Parkinson’s. I was keen to start medication so I could begin fighting it. I decided early on that I wouldn’t let this floor me but would take it on as another of life’s challenges, and with my friends and family’s support we would show the illness that it had chosen the wrong girl to mess with.
What I struggle with most is the vanity that comes with being a 32-year-old woman rather than a 75-year-old man
That attitude has got me through to my third year of living with Parkinson’s while remaining fairly unscathed. Day-to-day life is more difficult – I have a tremor and rigidity to my right side that makes everyday activities, such as walking, writing and holding cups of tea, difficult – but as you get into a rhythm and work the illness’s patterns into your own, you can start to outwit it. I pack my handbag so I know where everything is without fumbling. If I wake in the night, when my hand is usually steady, I draw my eyeliner on and paint my nails. At work, I schedule meetings for when my medication is working best. I try to maintain an outward appearance of normality.
Perhaps what I struggle with most is the vanity that comes with being a 32-year-old woman rather than a 75-year-old man; the need to still be accepted rather than given a wide berth and to be stared at for the right reasons. I’ve changed from being someone who never cared about the opinions of people I didn’t know to someone who sees them as my most honest critics.

Life doesn’t stop for long-term conditions; there are parties to go to, work deadlines to meet, chores to be done, gin to be drunk and foreign countries to explore…




I’ve had to adjust my impatience levels because I’m so much slower at tasks, with the result that I’ve become much more tolerant of others. As a society, we’re generally in a rush and people who get in our path are often pushed to one side, tutted at, or given an angry stare. I campaign for better awareness of Parkinson’s, so that every day we get a bit closer to a life where people understand why it takes us 10 minutes to get a coin from our purse only to drop it, or why we spill half your pint on the way back from the bar. I would like people to understand that we’re shaking not because we’re nervous or on drugs (well, not illegal ones anyway) and to realise that we might need a seat on the train. The more people know about the illness and the diverse range of people it affects, the easier our lives will become.

And the future? It’s a common misconception that you can die from Parkinson’s. In fact, it’s the complications associated with the disease in its later stages (breathing, swallowing and heart problems being some of the most common) that can be fatal. There is currently no cure and the condition is degenerative, so symptoms become worse and more varied as it progresses.
We may have taken a loss in Ali, a man who led the way with inner strength and dignity, but we won’t give up until we beat it
The specialists don’t know how quickly my condition will progress or which symptoms will be more dominant because the illness varies so greatly from person to person. Some people become so disabled that they are unable to walk unaided, but not everybody does. My future is uncertain, but to me that’s exciting. There are stories in the media every week about potential treatments or cures for the condition, making me hopeful that during my lifetime the words, “Remember when I had Parkinson’s; that was crazy” might trip off my tongue.
Until that day one thing that will keep me going is having people around me who treat me like Emma – “Emma who wears too many sequins” or “Emma who talks about gin a lot”, but never “Emma with Parkinson’s”. My parents, who are always there through ups and downs. My brother who looks out for me. My boyfriend, Shramik, who isn’t scared of our future. My friends, who aren’t afraid to laugh at me. My health care team, who keep me on the right path.
And my Parkinson’s family, the other 6,299,999 people out there in the world fighting the condition. We may have taken a loss in Ali, a man who led the way with inner strength and dignity, but we won’t give up until we beat it.
http://www.telegraph.co.uk/wellbeing/health-advice/what-its-like-to-have-parkinsons-at-32/?

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