Wednesday 28 September 2016

'I'm a very positive person, I never dwelt on the worst case scenario'

A diagnosis of Parkinson's Disease can be heartbreaking and debilitating, but staying active and the power of positive thinking can help grealy. Our reporter met two inspirational patients who refuse to suffer

Published 07/04/2015 | 02:30

Anita Connaughton set up a support group for people with Parkinson's and their families in Roscommon. Photo: Brian Farrell
Anita Connaughton set up a support group for people with Parkinson's and their families in Roscommon. Photo: Brian Farrell
Tom Hickey

Being diagnosed with a progressive neurological disorder like Parkinson's Disease is undeniably devastating and daunting at first. There are so many questions, from what course of treatment to follow to the disease's progression.

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But actor Tom Hickey, the ambassador for this year's Unity Walk on World Parksinson's Day (April 11th), has found that he's able to manage his PD well, and is still challenging himself to live a full and rewarding life in his 70s.

"I was officially diagnosed in 2013. Early in the year I was reading when I noticed my right leg had a tremor. I went to the doctor and my GP said it could be anything.

"A few months later I went back as it was a bit worse, and the doctor organised for me to see a specialist. There's a history of osteoporosis in my family, which is why I wanted to get it checked."

However, the official diagnosis was Parkinson's. The disease is caused by reduced dopamine levels in the brain and affects movement primarily. Those with PD have lost their supply of dopamine far more quickly than those without. Initially, those with PD might show signs of a tremor or shaking in the limbs.

Tom, who is currently appearing in Moone Boy as Grandad Joe, is a beloved Irish actor of stage and screen best known for his roles in The Riordans and My Left Foot.

Still passionate about acting, Tom has refused to let his PD stop him from pursuing his goals, and is currently starring in a one-man show.

"When I was diagnosed I thought to myself, okay, we can't cure it, but I can inhibit the growth. My position was that I had the disease, but just to take the medication and ignore it. That's all changed, because you can't ignore it.

"You have to talk to PD, tell it to 'get back'! I'm only getting used to having it now. As an act of defiance, I decided to revive this one-man show, The Gallant John Joe, and it's very demanding but it's going well."

For Tom, PD manifests mainly in his right hand.

"I mainly notice it when I'm trying to close shirt buttons, or tie my shoes," he laughs ruefully.

"It can slow you down enormously, and can be quite frustrating. Another side effect of PD is that you might suffer depression now and then. For me, it was nothing serious, just feeling a bit down. But I'm a big believer in the power of positive thinking."

Keeping his symptoms at bay is important for Tom. He's completely changed how he eats, incorporating regular breakfasts and some red meat into his diet, and he's discovered a new form of exercise.

"Something I'm finding really helpful is Pilates. I do it twice a week, and it's fantastic. The older you get, the slower you get as well even without the PD but thanks to Pilates, I'm back to my normal speed of walking."

Anita Connaughton, 58 from Roscommon, has been living with Parkinson's for 15 years. A mother of three, her diagnosis came as quite a surprise.

"Driving to Galway on a sunny summer morning in 2000, Parkinson's Disease was the last thing on my mind. But driving home a few hours later it was all I could think of.

"I had been referred to a neurologist because of a tremor on my right arm, and when he told me he was pretty sure I had Parkinson's, I remember thinking 'is he speaking to me?'

"I was numb and just could not take it in. I remember leaving the hospital some time later and walking out in to the sunshine and it seemed I was in a completely different place. The following week, I had a DAT scan, which confirmed the diagnosis."

Initially, Anita decided not to take any medication, feeling it wasn't necessary. However after two years she changed her mind, and is now still on the same dosage she was on then, with no need to increase it. She also feels that a lot of this is down to her positive mental attitude.

"I'm a very positive person, and have not changed. I never dwelt on the worst case scenario after I was diagnosed, but concentrated on how well I was at the time. I had accepted that I had Parkinson's but was determined to fight like I never fought before.

"Now I've taken it on round for round, and 15 rounds later I'm in the lead."

Anita decided that knowledge was power when it came to her PD, and read as much as she could on the subject. Like Tom, she thinks that keeping active is a huge part of staying well.

"In July 2012 I started up a support group in Roscommon," she explains. "This group supports PD patients and their families, and allows them to face their fears and rise to the challenges.

"I would advise anybody newly diagnosed with Parkinson's to join a support group in their area as it will definitely enhance the quality of their life.

"I can honestly say that Parkinson's has enriched my life because of the many wonderful people I have met because of it. Muhammed Ali once said 'don't count the days, make the days count', so I approach every day with this attitude and find that I'm very happy and enjoying life."

Anita will also be lining out for the Unity Walk on April 11, the third year in a row for her.

"It's always a great day and a credit to all who work so hard to organise the event."

Tom's motivation in being an ambassador for the walk was to show others that having PD doesn't mean you can't still do what you love.

"It encourages people to think positively, which is really important."

* For more information on Parkinson's Disease and the Unity Walk in Dublin, see parkinsons.ie.

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