‘Parkinson’s has completely changed my life,’ says Belfast woman diagnosed at 41

“I was on my own when I was diagnosed and that was the most horrific experience ever.“

A Parkinson’s diagnosis is never easy but for one Northern Ireland woman, it was something she had to hear twice.

Melanie O’Brien says she also struggled with managing the condition in the early years, after she was diagnosed in 2017, aged just 41. But she has found her way back through implementing complementary therapies alongside her medical team’s approach.

Around 4,200 people have a diagnosis of Parkinson’s in Northern Ireland. There are over 40 symptoms of Parkinson’s. But the three main symptoms are a tremor (shaking), slowness of movement and rigidity (muscle stiffness). Everyone’s experience is different. And not everyone will experience all of these symptoms.

READ MORE: ‘My GP spotted symptoms that made him think I had Parkinson’s – and he was right’READ MORE: Co Down woman on the key symptoms that led to a life-changing diagnosis

Looking back at her first symptoms, Melanie, who lives in Belfast, recalls: “I was going through a lot and my life was very stressful. I initially got a limp and my family thought it looked like I had had a stroke. The waiting was so long that I paid for private consultation and it was then that they diagnosed Parkinson’s.”

Unfortunately Melanie was diagnosed by a medical professional who has since been struck off the medical register. Their diagnoses were considered to be unsafe and a recall of patients was triggered, including those diagnosed privately. It was during this recall that Melanie was once again told that she definitely had Parkinson’s.

Melanie has also found her Parkinson’s nurse to be instrumental throughout it all. However, thousands of people with Parkinson’s don’t have access to health specialists they desperately need to live well with the condition.

She recalls: “After more tests and an MRI, it was my Parkinson’s nurse who had to deliver the results again. She had to break the news to me whether it was actually Parkinson’s or something else. It was a tough moment and she just handled it so well. I’ll never forget just how lovely she was to me.

“That second time I was diagnosed was an emotional appointment. I remember the exact moment and my Parkinson’s nurse settled me so much. The best way to describe it was a professional metaphorical hug.

“I was on my own when I was diagnosed and that was the most horrific experience ever. I wouldn’t want anyone else to go through it. I think it does matter who is with you. It does matter who you’re talking to. It was one of the top five biggest moments of my life.“

Looking back to her early days of diagnosis, Melanie said: “I definitely lost myself for a while. Just even things like getting dressed up – that’s exhausting – but I’ve got all that back again. I appreciate being able to go to the shops because I was isolated for about eight or nine years.”

Throughout her journey Melanie’s Parkinson’s nurse has continued to be vital in supporting her to live well with Parkinson’s, something Melanie initially found very difficult.

“I was so unwell and one day I left my job at a busy Belfast school in a wheelchair, weighing just over seven stone. In a moment of synchronicity, I had an appointment with my Parkinson’s nurse a week later.

“She gave me great advice and I remember she said, ‘Right, we’re going to get you sorted’. She listened to me but she was straight talking too which I needed. That was the worst day, Parkinson’s wise and she just got me turned around.

“Getting to where I am now is a bit like a jigsaw. I’m doing a lot of holistic work on managing stress, emotions, resentment and anger. I’ve done a lot of complimentary therapy, including acupuncture, sound healing and journalling. But all in conjunction with the medical route, not instead of. I think it’s worth trying anything to see if it can help.

“I’m a great believer that Parkinson’s was meant to happen to me, so I could make changes in my life. I’m positive now and I see the big picture. I’m particularly keen on promoting yoga to people with Parkinson’s as it’s had such a good impact on my life.”

Melanie’s Parkinson’s nurse remains an important cog in the wheel, but she doesn’t see her often enough. And that’ something Parkinson’s UK is trying to change through their Nurse Appeal.

“I’m so lucky to have had access to my Parkinson’s nurse but I don’t get to see enough of her, that’s the issue. It’s maybe three years since I’ve seen my Parkinson’s nurse. It’s not her fault but sometimes you need somebody to talk through what’s going on, a change in medication for example and I know some other people who are left on their own. Everyone with Parkinson’s should have access to a Parkinson’s nurse.”

Parkinson’s UK recently launched its largest-ever fundraiser, the Nurse Appeal, aiming to raise £9m to fund Parkinson’s nurses and other specialists across the UK. Parkinson’s specialists are a lifeline for the 153,000 people in the UK living with Parkinson’s, but currently over 30,000 people with the condition lack access to them.

Melanie shared her story ahead of this year’s Walk for Parkinson’s in Northern Ireland, which takes place at the Titanic Quarter on Sunday, September 14, where the NI Parkinson’s community will come out in their droves to support the charity.

There are two walk routes available, 1.6 miles or 5.4 miles. Starting by Titanic Belfast, walkers will pass HMS Caroline before looping back round to explore the River Lagan, crossing the river at Albert Bridge and Lagan Weir footbridge before making their way back along the waterfront passing some iconic landmarks.

Emma McNeill, Community Fundraiser at Parkinson’s UK in Northern Ireland, said: “It’s inspiring to have people from across Northern Ireland’s business community, signing up to support Walk for Parkinson’s to help raise money for Parkinson’s Nurse Appeal. The funds raised will aim to raise £9 million over three years to increase the number of Parkinson’s specialists. This will give thousands of people with Parkinson’s access to the specialist care they need.

“We hope as many people as possible will come along to take part in the walk, which promises to be lots of fun. We’re also keen to hear from anyone who would be interested in volunteering to support the smooth running of the event.”

Sign up here: events.parkinsons.org.uk/event/walk-parkinsons-titanic-quarter or sign up to volunteer on the day: https://prksn.uk/41KPSRY.

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