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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.”
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.
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”.
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.
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.
However let us not forget that former Pope Benedict is responsible for “Crimen sollicitationis”, the Vatican’s officials secret guide for covering up child sexual abuse.
This shameful document should not be forgotten. Every Catholic needs to know about this:
https://en.wikipedia.org/wiki/Crimen_sollicitationis?wprov=sfti1
@SouperArlene:
That was 10 mins I’ll never get back, anyway straight from the page you just linked:
“There is no basis to assume that the Holy See envisioned this process to be a substitute for any secular legal process, criminal or civil. It is also incorrect to assume, as some have unfortunately done, that these two Vatican documents are proof of a conspiracy to hide sexually abusive priests or to prevent the disclosure of sexual crimes committed by clerics to secular authorities.”
Ah yes I thought a top secret, Vatican child abuse guide seemed a bit much alright. You’re tin foil hat is on a bit tight.
@SouperArlene: I am very curious to see where in this document you can back up your false claim? That is not to say the church has not covered up abuse – clearly it has – but this document is not some secret memo on how to cover up abuse. It is rather the opposite.
Oh my God Jimmy and Paul Whitehead I cant believe you’re defending this document.
It imposes an oath of secrecy on the child victim, the priest dealing with the allegation and any witnesses. Breaking that oath means excommunication from the Catholic Church.
So in other words, if the child does not keep quiet about the abuse, he has to go to hell according to their damnable false doctrine.
How anyone can defend this is beyond belief.
Good luck to you with your dying religion.
@SouperArlene: I’m defending no-one I’m only calling out your bullsh*t. Have you actually read the link you posted? Read the section on trial confidentiality and get back to me..you are twisting the whole thing to suit your narrative
@SouperArlene: There are many things wrong with your post. The document you refer to was approved by Pope John XXIII and was nothing to do with Pope Benedict.
Did you read the document? It’s clear you did not.
@SouperArlene: Just pointing out that this document is not what you describe it to be. You clearly have never read it in its entirety. You are however right in some aspects of how the church has dealt with abuse by cover up and imposed silence – I am just saying this is not the document that you claim it to be.
“Retired Former Pope” – I didn’t realise ‘Former Pope’ was an actual position. Surely it’s just Former Pope???
@John McSweeney: I believe the Pope formerly known as Pontiff is the politically correct term.
@Gordon Comstock: Pope Emeritus is the correct term.
@John McSweeney: The correct terminology is ‘Pope Benedict emeritus’… it means retired, but allowed to retain the title of the office.
Two “sole representatives of God on Earth” in one shot. Stunning
@Paraic: Incorrect – only one pope.
@Phillip O’Brien: Incorrect. Benedict is still a Pope. Emeritus. But he retains the title.
@Paul Whitehead: Incorrect – a poor and pope emeritus are not the same thing. Pope Emeritus Benedict can not speak ex cathedra.
Lovely photo! Can the journal confirm where I could buy a copy?
He could do with allowing married priests in remote parts of Ireland as well, retired priests covering 3 and 4 parishes at the moment.
Stay behind closed doors please
However Pope Benedict (Ratzinger) cannot deny that he was the main villain behind the notorious Vatican guide for covering up child abuse, namely: ‘Crimen sollicitationis’.
Even the Vatican acknowledges this now. In any other industry he would be in jail but for some reason he is given a free pass. He is responsible for so many crimes against children it’s mind boggling.
For more information see:
https://en.wikipedia.org/wiki/Crimen_sollicitationis?wprov=sfti1
Oops. Apologies for posting twice.
Still, it’s not like threatening children if they tell on their abusers or anything.
@SouperArlene: Please will you look at when this document was drawn up and who signed it and who approved it and you’ll see it’s of no support to your argument at all.
When pressed, most people will admit, quite rightly in my opinion, to the acceptance of some ‘version’ of ‘god’ cum ‘spirituality’ but these two guys are evidence that the ‘blind do lead the blind’.
@Denis McClean: Did He ‘Slap’ his hand I wonder.!!
@Denis McClean: not me! In fact I think most people know in their heart of hearts it’s all codswollop but dervive some comfort from the incesting delusion that they are not just heading into a deep dark abyss of nothingness when they die.
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