My story: Early Onset Parkinson's Disease

9/11 means the day terror came home to roost doesn’t it?  It does to me as well; but before those mind-blowing images appeared that day, I had a terrifying experience of my own – I woke up and my body no longer functioned properly.

That day was my own personal Ground Zero.  My name is Kate.  I am (still, just!) 39 years old.  And I have Early Onset Parkinson’s Disease.

When I got up and looked in the mirror very early that morning I almost had a heart attack – the right side of my face was pulling down almost to my shoulder blade; was I stroking out?  No – my father had suffered from a stroke a few years earlier and I knew they didn’t hurt; this pain was excruciating – and it didn’t seem to stop.  Eventually, though, it wore off – so I dismissed it as a weird cramp and got on with things.

Except it came back.  And I realized other strange things were going on.  A tremor when I was still, or very stressed, or tired.  My beautiful handwriting started to wobble and disappear off the page in a kind of snail trail.  When I tried to hold onto a glass or plate – my brain thought ‘OK’, but my hand said ‘nuh uh’ – and another set of crockery was ruined.  I had no stamina.  So, the rounds of specialists began.  And my life changed forever.

CT scans.  MRIs.  Lumbar punctures.  EKGs.  Blood tests.  Being recorded before a panel of student neurologists who were ‘fascinated’ by my facial grimaces.  I was not fascinated by their poking and prodding, and ended up running out of the room in tears.  I was diagnosed with MS – and treated accordingly.  All that happened was that I became intensely depressed and put on 20kgs.  So – not MS.  What next?

Well, ‘what next’ was my life fell apart.  My ability as an excellent netballer and skier waned.  I had to give up work – a very lucrative and rewarding career in change management and HR.  I even had a slot on Sky Business and Radio National.  But how can you do that when you feel like a freak?  And have no energy?  The answer is – you think you can’t.  Reinvention and acceptance was a long way off.

I went through about 6 years of blather and disbelief until I was finally, miraculously sent to the most amazing man in the world – my beautiful Dr H in Melbourne.  He took one look and said ‘you poor darling – we really need to help that face don’t we?’.  Hysterical, snot-filled bawling from me.  Empathy and tissues from him.  Then – oh bliss!  Botox – and the spasms stopped.  They stopped. The other symptoms were still there – but the pain had gone.  Life could start to be coped with.

I was finally diagnosed with Early Onset Parkinson’s – with the presentation of Dystonia as an additional blessing.  Dystonia is the spasmy, cramping side of ‘Parky’.  I am very fortunate in that mine is limited – my beautiful friend Rogers has it right down her neck and spine; my ‘dysto-daughter’ Bailey, who is only 16 – all over her body.

The big issue with Parky?  No two people have the same symptoms – there are common ‘tells’, but they can take a long time to develop – and by the time they do, the damage has already been done (in a nutshell – the brain stops transmitting enough or any dopamine, causing muscles to fail to react to commands).  Doctors have a hard time diagnosing – especially as there is a lot of ignorance regarding the disease.  This is especially true when it comes to young people.  Don’t only old peeps have Parky?

I point you to my god and hero, Michael J Fox – who successfully hid his disease for over 10 years.  When I read his first autobiography, I wept like a baby – for it was my own story.  I too wave my hands around like mad when I talk to hide my tremor; I too talk a lot so that my jaw doesn’t shake.  I crack jokes and refuse to take my condition seriously in public.  In private though – when my jaw is clamped together and my feet are curled in on themselves in geisha-girl cramps, I wish my life was not my own – but then, how could I possibly wish it on someone else?

How do I deal?  I take my meds properly.  I eat well (Parky means a very high metabolic rate – I am 5’10” and a size 6).  I work for myself.  I have my own company – I have always lived for fashion and writing, and am lucky enough to now combine the two.  The digital age means that I can work anywhere, at any time – if I need to be in bed so be it.  I can Skype from my sofa.  Being a stylish smartarse is possible anywhere!

It has taken me a long time to go public as a Parky chick – but I am literate and able so why not speak out?  I can now deal with the tiredness, the occasional vague outs, the blank expression that sits on my face when I don’t concentrate.  Through my work with Parkinson’s Australia and Beat Dystonia in the US I try to educate other E Onset kidlets that life is spectacular – and the public that we are not drooling idiots.

Because when you think about it – Parky is just another challenge.  And I love a good challenge.  Now if I could just get over turning 40…

Kate Stone-Crouch is a fashion stylist, book critic, writer and the Managing Editor for bellabox, the online beauty company. She owns her own company, Wardrobe Witch. You can follow her on Twitter here.