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 that Emma Tinkler lives 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 the age of 48.
‘Many people think that Parkinson’s is an eighty-year-old disease that only affects men, but that is not the case. Young women get this too,” she told FEMAIL.
Emma’s health problems 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 seeing her doctor. The test results came back clear and Emma assumed everything was fine, so she canceled her next appointment.
Emma Tinkler suffers from both multiple sclerosis and Parkinson’s disease. The mother-of-two from Sydney has no family history of either
In 2010, she felt a “waterfall in her eye,” numbness in her toes and noticed her handwriting was shaky. She went to a doctor and was diagnosed with multiple sclerosis
The side effects were minimal, so she continued to live a relatively normal life and had two children, daughters Elodie and Aggie.
It wasn’t until 2010, when she felt a “waterfall in her eye,” numbness in her toes and noticed her handwriting was shaky, that she decided to go to the doctor.
She never expected what the doctor said next.
“At worst it could be MS,” the GP told her, before sending her to 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 has no family history of the disease and she planned to have children with her then-husband.
MS sees the body’s immune system attacking and damaging nerves throughout the body. The diagnosis is usually made in women between the ages of 20 and 40.
It can lead to serious symptoms because signals to the brain are affected. Symptoms include the inability to walk properly, loss of hand and arm function, pain, vision changes, and memory loss.
Fortunately, Emma’s side effects were minimal and she continued to live normally before having two children, daughters Elodie and Aggie.
“I ticked a lot of boxes for MS – I was a woman in my early 30s and three out of four patients diagnosed with MS are women,” she said.
Flash-forward to 2019 and Emma noticed strange things happening to her body. Once during a yoga retreat, her legs started shaking. Another time her left foot felt ‘limp’ and was difficult to lift while walking
It wasn’t until she got a second opinion from another neurologist that she was diagnosed with Parkinson’s disease at the age of 48. In 18 months she had gone from walking fine to using a cane and finally to a mobility scooter.
Flash-forward to 2019 and Emma noticed strange things happening to her body. During a yoga retreat, her legs started shaking. Another time her left foot felt ‘limp’ and was difficult to lift while walking.
Initially, doctors had little idea what was causing the symptoms and thought it was a functional neurological disorder (FND).
Because there is no FND medication, Emma had physiotherapy and psychology and went to a rehabilitation 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 the age of 48.
Over the course of 18 months, Emma went from walking just fine to needing a walking stick and eventually a mobility scooter.
‘One of my hands was shaking constantly, the other felt like all my fingers were stuck together. “I couldn’t text, I couldn’t eat properly, I couldn’t hold a hamburger or a 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.
Both conditions are incurable and Emma must learn how to deal with medication
“At Christmas I tied my shoelaces and sent a photo to my mother… it was incredible,” Emma said through tears.
‘After the holidays I went to my daughter’s school and was able to walk to the front office. The woman at the counter started crying because the last time she was with me I was in a mobility scooter. It was a precious moment.
‘The support I have had from friends, family and the NDIS has been incredible. I couldn’t have done it without them.’
Despite everything she has been through, Emma feels fortunate that she, and other Australian patients, have access to medicine.
But she is aware that there is still a long way to go to find a cure.
“I am so passionate about advocating for Parkinson’s disease. It is the fastest growing neurological disorder in the world, but many people don’t know what it is.
‘Because I went downhill very slowly, my children made the journey with me.
‘When I told them I had been diagnosed with Parkinson’s, they didn’t know what that meant, so I explained it to them. But the difficult thing now is the unpredictability of everything.’
Because both MS and Parkinson’s are incurable, Emma must control her symptoms with medication.
She is unable to feel flat and walk with a cane, but is able to walk springily again after taking her medication.
Emma shares her story in support of Shake It Up Australia. To donate to research, click here.