By Emma Lawton
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| 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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