I thought being diagnosed with an incurable disease at 33 was the worst thing that would ever happen to me. Fifteen years later, my life fell apart again

At first glance you wouldn’t know Emma Tinkler is living with two incurable diseases that require constant monitoring and medication. 

The Sydney mother-of-two was diagnosed with multiple sclerosis (MS) at the age of 33 and Parkinson’s disease 15 years later at 48.

‘A lot of people think Parkinson’s is an 80-year-old disease that just impacts men, but it’s not. Young women get this too,’ she told FEMAIL. 

Emma’s health issues began in 2005, shortly after returning from her honeymoon, when she started feeling pins and needles in her fingers. 

She wasn’t concerned and ignored the symptoms for a week before going to see her GP. Test results came back clear and Emma assumed everything was fine, so she cancelled her next appointment.

It wasn’t until 2010 when she felt a ‘waterfall in her eye’, numbness in her toes and noticed her handwriting was wonky that she decided to go to the doctor. 

What the doctor said next was something she never expected. 

‘Worst case scenario, it could be MS,’ the GP told her, before sending her off to the hospital for further tests.

The following week she had an MRI that confirmed the worst: she had MS. 

The diagnosis came as a complete shock. Emma doesn’t have any family history of the disease and she was planning to have children with her then-husband. 

MS sees the body’s immune system attack and damage nerves throughout the body. It is most often diagnosed in women aged 20 to 40.

It can lead to severe symptoms as signals to the brain are impacted. Symptoms include the inability to walk properly, the loss of hand and arm function, pain, vision changes and memory loss.

Fortunately Emma’s side effects were minimal and she continued living life as normal before having two children, daughters Elodie and Aggie. 

‘I ticked a lot of boxes for MS – I was a woman in my early thirties and three out of four of patients diagnosed with MS are women,’ she said.

Flash-forward to 2019 and Emma noticed strange things happening to her body. At a yoga retreat, her legs started shaking. Then another time, her left foot felt ‘floppy’ and was difficult to lift when walking. 

At first doctors had little idea what was causing the symptoms and thought it was functional neurological disorder (FND). 

Because there’s no medication FND, Emma had physiotherapy, psychology and went to a rehab hospital for several weeks, but her symptoms worsened. 

It wasn’t until she got a second opinion from another neurologist that she was diagnosed with Parkinson’s disease at 48. 

Over 18 months, Emma had gone from walking perfectly fine to requiring a cane and eventually needing a mobility scooter.

‘One of my hands was trembling constantly, the other one felt like all my fingers were stuck together. I couldn’t text, I couldn’t eat properly, I couldn’t hold a burger or cup of tea, I wasn’t in a good state,’ she said.

Emma was prescribed medication and within a few days she noticed a drastic difference.

‘Over Christmas I tied my shoelaces up and sent a picture to my mum… it was unbelievable,’ Emma said through tears.

‘After the holiday break I went to my daughter’s school and was able to walk to the front office. The woman at the desk started crying because the last time she was me I was in a mobility scooter. It was a precious moment.

‘The support I’ve had around me from friends, family and the NDIS has been incredible. I couldn’t have done it without them.’ 

Despite everything she’s been through, Emma considers herself lucky because she, and other Australian patients, have access to medication.

But she is aware there’s still a long way to go to find a cure.

‘I’m so passionate about advocating for Parkinson’s. It’s the fastest-growing neurological condition in the world, yet a lot of people don’t know what it is.

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‘Because I went downhill extremely slowly, my kids went through the journey with me.

‘When I told them I’d been diagnosed with Parkinson’s they didn’t know what that meant so I explained it to them. But now the tricky part is the unpredictability of it all.’ 

Since both MS and Parkinson’s are incurable, Emma needs to manage her symptoms with medication. 

She can go from feeling flat and walking with a cane to having a spring in her step after taking her medication. 

Emma is sharing her story in support of Shake It Up Australia. To donate to research, click here.