‘Parkinson’s is going to live with me, I’m not going to live with it’

A DUNSHAUGHLIN woman who was diagnosed with Parkinson’s Disease at the young age of 52 says she is on a mission to bring awareness to the condition that is seen as an older person’s disease.

Former nurse Anne Collins (61) who has been living with the disease that she insists “does not define her” for over ten years is a passionate advocate of accessing supports to cope with the diagnosis.

Mum of six Anne is speaking out ahead of Parkinson’s Awareness Week (6th – 11th April). Parkinson’s disease (Parkinson’s) a progressive neurological disorder is the second most common neuro-degenerative condition after Alzheimer’s and there are approximately 12,000 people living with Parkinson’s in Ireland.

“People think it is an older person’s disease, but it is not, there are younger people being diagnosed and showing symptoms from 18 and 19 and even younger,” said Anne.

“When I was diagnosed my motto was, Parkinson’s is going to live with me, I’m not going to live with it. It doesn’t define me, I’m still the person I used to be and I’m just going to get on with life.”

Anne admits feeling “relieved” when she finally got the diagnosis.

“Back in 2009/2010 I started showing some visible signs of a tremor, it came and went and my GP said to keep an eye on it.

“About six months later it came back again, and my mother had Parkinson’s, so I thought my God is this something starting so she sent me to a neurologist who initially diagnosed me with something else.

“The doctor didn’t do anything wrong, he did what he thought was best but it wasn’t the right diagnosis. Around 18 months later he referred me to a consultant, and I was diagnosed with Parkinson’s in 2012.

“I was so relieved because at that stage I thought it was all in my head, I just couldn’t cope with it to be quite honest

“I was still working at the time but then a year later in 2013 I couldn’t keep working anymore and that was one of the hardest things ever.

“I nursed from when I was seventeen-and-a-half, I started in 1977, here I was told in 2013 that you can’t keep your job anymore, that was very hard to take.”

The Dunshaughlin woman found it difficult to adjust to life with the disease at first as she explains.

“When you are getting your head around this you don’t know how you are going to cope with it, you want to contact people and get support, you make the first step then you pull back again.

“I am a health professional and I thought I should be able to do it straight away and that is not the way it works; it is different for everybody.

“You try and hide from it, in supermarkets you try and not let people know you are shaking and you try to act normal and it is the worst thing ever you could do.

“I d come out of work every day and was giving one hundred and ten percent to my job and I had nothing left for family or myself afterwards.

“It was hard to remove myself from that situation but looking back it was the best thing ever because then you start getting your life together again and gain perspective. So when I started to slow down and realised you can’t do things as fast as you could before you start to change your lifestyle.”

It is important to create a support system around you according to Newry native Anne who was a former nurse in Connolly Hospital.

“Since I was diagnosed and I started with Move 4 Parkinson’s, an organisation that offers a range of activities that People with Parkinson’s (PWP’s) can undertake to improve their quality of life and then joined the Parkinson’s Association of Ireland through Young Parkinson's Ireland they have been the best thing I have done. Everything changes but you just don’t let it take over your life.

“I do musical movement therapy three times a week which is great for your balance which suffers with the condition and go to a choir twice a week. The other thing with Parkinson’s is that you get very quiet, so the singing is good for that.

“Getting together with people and hearing people’s stories there is a lot of positivity in it.

“When I was with my counsellor initially after I was diagnosed, she said to me you can stay off sick from work and take time to mend and I said ‘what I’m not actually sick, I have a neurological disease that is going to progress but if I take on the sick cap now it is going to be a long journey for me’. You can’t stop it but you can do your best to rise above it.”

More more information go to www.parkinsons.ie and www.move4parkinsons.com