“We had to open ourselves up as a family living with Parkinson’s disease”

After years of keeping his Parkinson’s diagnosis private, Ray Feeney finally disclosed the news publicly. He and his wife, Ana María Tamayo, discuss the importance of opening up about the condition as a family – and the value of honest communication

“About a year before my diagnosis, I started to notice that when I was typing on my computer, the fourth finger on my right hand would sometimes become disobedient. It wouldn’t follow my desire to type something – and it would just bounce up and down on the keyboard,” recalls Ray Feeney.

The former Catholic priest – who is originally from County Galway, Ireland – went to see a neurologist to try and get to the bottom of what he was experiencing. “She gave me a clinical examination, and I also underwent a brain scan and a procedure called electromyography, which is a test that checks whether you have a tremor to see whether I had a tremor,” says Ray.

After the tests had been completed, the neurologist told Ray – who lives in Peru with his wife, Ana María Tamayo, and their two children – that the results seemed to indicate that he had Parkinson’s.

He may have received this diagnosis back in 2011, but Ray says he remembers that day clearly: “What I felt at the time was a sense of emotional freezing; I didn’t know how to think, and my mind went blank.”

“When I was diagnosed, my doctor said to me: ‘Ray, I want to give you some advice. Please be careful who you tell that you’ve got Parkinson’s’. Because here in Peru, there is a lot of prejudice against people with this condition.

“I was in two minds about what to do with her advice. Since she was the authority, I followed her guidance – but I didn’t feel comfortable because, naturally, I wanted to let people know about my diagnosis,” he adds.

Ray and Ana María with their two children, Patrick and Sofia.

“I decided to declare to the world that I had Parkinson’s”

For several years, Ray kept his diagnosis to himself, only divulging the news to close family members. “What didn’t help was the physical reality of it – I looked more or less the same, and to the untrained eye, it was very hard to detect that I had Parkinson’s,” he says. “So I was in that kind of limbo for a long time, and it felt uncomfortable.”

Around five years ago, Ray says that he grew tired of bottling it up. This led him to write a post on Facebook sharing the news of his condition. “I decided to come out of my Parkinson’s ‘closet’ and declare to the world that I had Parkinson’s,” Ray explains. “It was a gesture to say: ‘I’m tired of this – I want to be me, and I want to get on with life’.”

He recalls how the Facebook post was met with positive and moving comments: “It was an energising experience that gave me the courage to follow my own intuition along with my wife’s guidance.”

Ana María, meanwhile, says she felt “relieved” after Ray disclosed his condition publicly: “I think it was very brave of him to write that post on Facebook. It was a big and important step – particularly because we live, to some extent, in a culture where men aren’t supposed to publicly share issues regarding health.”

At first, Ray only shared news of his Parkinson’s diagnosis with close family.

Advice from a loved one

Like many partners, Ana María has played an important role in supporting her husband throughout his journey with Parkinson’s – including when he chose to share the news of his condition online. “I realised that we had to open ourselves up as a family living with Parkinson’s – not just Ray as a person who had been diagnosed with the condition but as a family,” she explains.

Because the condition can affect both the individual and their loved ones, Ana María says educating both parties on Parkinson’s is crucial. “Look for quality and reliable information,” she says. She adds that it’s equally important to keep pursuing passions and hobbies that give you pleasure.

Communication with family members is also key in Ana María’s eyes. “If you have children, explain the basics to them. They need to know – otherwise, they might get frightened,” she says.

“Parkinson’s impacts the people whom you share every day with. It’s important to be aware of that. If you share things and are open, you can build health in your family.”

Read more:

“I wanted to help make sense of what was happening to us”

‘I Got You’ – a musical tribute to Parkinson’s disease caregivers