Friday 22 September 2017

'I'm terrified about the future' - Irish mother (47) on her fight with Parkinson's

Adell Dunleavy was devastated when she learned she had early onset Parkinson's. But, she tells Joy Orpen, she is now back on track and fighting for much-needed services in the Midlands

Adell Dunleavy: 'I'm terrified about the future and the effect this illness will have on my children'
Adell Dunleavy: 'I'm terrified about the future and the effect this illness will have on my children'

Adell Dunleavy (47) has nothing but lovely memories of St Mel's, a beautiful, neo-classical cathedral, nestling in the centre of Longford town. The cathedral's foundation stone was laid in 1840. "I remember, as a child, seeing those angels looking down from the pink ceiling. I'd be gazing at everything but what was going on in the Mass," she says impishly. "And afterwards, my friends and I would be parading up and down the aisle pretending to be brides. That cathedral was our playground, because we didn't have any other."

However, on Christmas Day, 2009, catastrophe struck, when a massive blaze razed St Mel's to the ground. "We lived on a hill, so we could see the awful pall of smoke," adds Adell. "There was a devastating sadness that Christmas." But fortunately, Longford has a commendable community, who with the help of experts and €30m, restored the cathedral to its original splendour. "I'm so pleased to have it back," says Adell. "I think they made it even more beautiful."

When she was 17, Adell met JJ Dunleavy, and in 1990, they married. When asked if the ceremony took place at St Mel's, Adell responds incredulously, with an "Of course", as if anything else could have been even remotely possible.

"At 11am on July 21," she says, beaming widely. She and JJ have three children: David, Shauna and Leah, who are 23, 21 and 17 years old, respectively. When the youngest was two years old, Adell did special-needs training for a year, and has never looked back. "I love working with children - I love them all, every one of them," she says. "Each has their own individual quirks."

Though there were some challenges for the Dunleavy family over the years, things progressed well enough, until 2015, when Adell went to see her GP about a pain in her ribcage. But an earlier chance remark proved prophetic. "Before my appointment, I was giving some papers to a teacher at school, when my hand started shaking," she explains. "So, jokingly, she asked if I'd been 'on the drink?' and I said no, but that maybe my shaking hand was due to Parkinson's."

Perhaps that friendly banter prompted Adell to mention the tremor to her doctor. "I thought the shaking was being caused by too much coffee, or was a side effect of my asthma inhaler," she says. "But when I mentioned it, the doctor looked up from writing her notes, and asked how the shaking was now, and what my handwriting was like? And when I told her my writing had become miniscule, she suggested I have some tests, so we could 'rule out' certain things."

A neurologist in Dublin, having detected a very definite weakness on one side of Adell's body, referred her on to another consultant, who specialised in movement disorders. "After an hour with him, he diagnosed early onset Parkinson's," says Adell. "My exact words to him were, 'Thank god it's not a brain tumour'."

The Parkinson's Association of Ireland (PAI) says, "At its simplest, Parkinson's is a progressive, neurological disorder, which so far, cannot be cured. It's variable in its progression, while the symptoms can be effectively controlled with medication for many years. Parkinson's results from a shortage of dopamine, a chemical that helps instructions from the brain to cross from one nerve cell to the next."

Adell points out that having been seen by two specialists, and following her own research, she had been left in no doubt that something serious was wrong. "Parkinson's was the lesser of a lot of other evils," she says candidly.

Nonetheless, it was a terrible shock, and one JJ didn't take lightly either. "He was devastated," says Adell. "He's been extremely supportive since the very beginning. He will cook and clean without being asked, and he'll sleep in another room if he thinks I'm not sleeping myself. JJ would move a mountain if he thought that would help me."

Following the initial diagnosis, Adell was prescribed medication. However, as 2015 progressed, she suffered a number of additional physical and emotional setbacks of a personal nature, which eventually led to her taking to her bed, and giving up work for some months. It was a very, very bleak time for her and her family, but this Longford lass is a real trooper who eventually found the strength to get up and go off to a conference organised by the PAI.

"I found a world of information there," she explains enthusiastically. "It was a big relief to meet other people with similar problems and challenges, and to share ways in which we could solve some of them. What is also important is that it opened my eyes to what I'd been blocking out - that I'm terrified about the future and the effect this illness will have on my children. The truth is, this is really hard on my kids. So, having the kind of support that PAI offers is a godsend." Soon after the conference, Adell joined the Roscommon branch of the PAI, and continues to get great support from the members there.

Adell says apart from the fact that a lack of dopamine causes tremors, the condition can also contribute to mood swings, poor appetite, fatigue and disrupted sleep. "So, good nutrition and supplements are helpful," she explains. "Having enough rest and staying in my comfort zone are also very important."

But none of that has deterred Adell, who is now happily back at work, from supporting the PAI during Parkinson's Awareness Month (April), nor from helping to organise the opening of the Longford branch of the PAI.

"We are based in the Family Centre behind St Mel's which plays such a big part in our local community. If I'm out walking, I won't ever pass the cathedral without nipping in to light a candle," she says.

As far as funding the initiative is concerned, Adell explains,"We did the Vhi Mini Marathon last year and raised over €2,200 for Parkinson's. And we'll do it again this year. Since we opened this branch, the number of people putting their names down for the mini marathon is already up on last year, and it's only April. Our goal is to fund a specialist Parkinson's nurse for the Midlands. Geography shouldn't prevent us from getting the access to the medical and emotional care we deserve," she concludes.

For more information, contact the Parkinson's Association of Ireland, tel: (1800) 359-359; Longford branch, tel: (087) 764-0409, or see parkinsons.ie

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