#Open journalism No news is bad news

Your contributions will help us continue to deliver the stories that are important to you

Support The Journal
Dublin: 11°C Saturday 31 October 2020

'In spite of themselves, people begin to see you in a different way'

A Unity Walk is taking place in Dublin today to support the 9,000 people in Ireland who have Parkinson’s Disease

It was an utter and complete shock. I remember I just laughed when I heard it, in disbelief.

HUGH BOYLE WAS 52 years old when he was diagnosed with Parkinson’s disease.

Until then, he thought the condition only affected older people.

“I was told there’s no cure. [Doctors] said they would help me manage it … that’s what they’ve done.”

Shutterstock-216445819 Source: Shutterstock

Hugh continued his work as a senior civil servant for another seven-and-a-half years after his diagnosis. He said “most of my colleagues were entirely unaware” he had the condition.

That’s how I wanted it to be. People, despite themselves, begin to see you in a different way if they know. I wanted to be treated on my merits … without sympathy or anything of that nature.

Hugh retired last December. He said the decision was made sooner than he would have liked as he developed arthritis and spinal problems which exacerbated his condition.

“My own power of control over my decision [to retire] was somewhat removed from me and that was difficult.”

Hugh said he is lucky that Parkinson’s hasn’t become “too intrusive” on his daily life.
He takes about 12 tablets every day to keep symptoms as minimal as possible, as well as having a balanced diet and getting “plenty of exercise”.

He told us his symptoms have “progressed, but slowly thankfully”, adding the effects have not been “alarmist or dramatic”.

He has noticed that his handwriting “can be quite poor sometimes” or he will find himself walking “too fast” and taking “shorter steps”.

Mental health

Hugh said he has not suffered from depression because of his illness, but it is a common symptom and something he is “concerned will happen”.

As time goes on people need to pay more attention to the psychological aspects of the disease. Depression can be an aspect of Parkinson’s and it’s important to be aware of that … It can be destructive and demoralising.

He said people with the condition need to be made aware of the supports that are available to them – both in terms of their physical and mental health.

Hugh is single, something he said brings “another set of challenges”.

I’m used to an independent life. It will be compromised a bit as time goes by – that happens anyway with age.

He said people with Parkinson’s can “overcome some of that by adapting your home” and making financial plans.

Hugh said his family and friends are somewhat reluctant to talk to him about his condition “out of politeness or fear of offending or making me uncomfortable or whatever”.

“The onus, perhaps, is on me to raise Parkinson’s in the conversation … as I engage they become more willing to engage,” he noted.

The carer’s perspective

Judy Williams cared for her father Norman for four years before his death in 2014.

Judy and Norman (picture courtesy of Richard Kendrick) Judy and Norman Source: Richard Kendrick via Judy Williams

She made the decision to close her IT consultancy business and move home to Dublin after living in London for 24 years.

It wasn’t a difficult decision – it was the right thing for him and me.

Judy’s mother Jean was diagnosed with bowel cancer in September 2009 – meaning she could no longer care for her husband.

She died just seven months later. It was a shock for the family as Jean had successfully come through surgery. “We thought we were on the home stretch,” Judy recalls, noting:”Her dying had a big impact on him.”

Judy said her father was “still reasonably independent at that time”.

Norman also went on to develop dementia, making his needs more complex.

Brian Magennis, a specialist in Parkinson’s disease, said Lewy body disease – a type of dementia closely associated with the condition – accounts for about 6% of all dementias.

“Of those with Parkinson’s disease the older you are getting it, the higher risk you are of getting dementia with it. Overall PD/dementia occurs in about 40% of patients to various degrees,” Magennis said.

Judy was eager to keep her father as active as possible and brought him to concerts and plays as he loved music.

She also brought him to events run by the Parkinson’s Association of Ireland (PAI) and the Alzheimer Society of Ireland, so he got to ”meet people who could understand what was happening to him”.

Norman Norman Source: Richard Kendrick via Judy Williams

Judy said looking after her father was “hard work but lovely”, and a time she would never change. She won the South Dublin Carer of the Year award in 2012.

Norman died from pneumonia in February 2014 – at the age of 81.

“My whole life was geared around dad so it’s hard picking up the pieces again,” Judy noted. She’s now studying journalism and chairs the Dublin branch of the PAI – on a voluntary basis.

She said she wants people who have been recently diagnosed with Parkinson’s to know they can “live well with it”, stating: “It’s important to get the right help.”

Unity Walk

Judy will be one of many people taking part in the PAI’s Unity Walk in Dublin today, World Parkinson’s Day.

Parkinsons_09 PAI ambassador Tom Hickey at the launch of the 2015 Unity Walk Source: Conor_Healy_Photography

Paula Gilmore, PAI CEO, said the main aim of the event is to “raise awareness across Ireland about Parkinson’s and its impact on people living with the disease”.

We want to improve the quality of the lives of the 9,000 people in Ireland living with PD on a daily basis. It is important for people to be aware of the symptoms of PD, as well as understanding the condition and what it means for you and your family. Parkinson’s is a journey, and the PAI are here for you on every step of it to support you.

The walk will take place at 12pm – starting at the Davenport Hotel (Merrion Street Lower, Dublin 2) and journey around Merrion Square Park. Afterwards there will be light refreshments and entertainment at the Davenport Hotel. Members of the public are welcome to attend.

To coincide with World Parkinson’s Day, the PAI has created an information booklet on the condition. More details are available here.

Read: Breakthrough by Irish scientists could lead to cure for Parkinson’s Disease

Read: This vibrating pen makes writing easier for those with Parkinson’s disease

About the author:

Órla Ryan

Read next: