'It takes a while to get your head around it...'
Thanks to the actor Michael J Fox and his awareness-raising activities, most of us now have an idea of what Parkinson's Disease is. It is a progressive neurological disorder for which there is no cure as of yet. Nor is it known what causes it but it is known that things like stress exacerbate it.
Marian Newman (60), never suspected she might have Parkinson's when she started showing symptoms of the disease. Five years ago, she was leading a busy career as a banker in the City in London. She came home to Mayo to visit her ill mother. Six months later, she was diagnosed with Parkinson's.
"I was constantly tired but I put it down to work and didn't think more of it," she said.
Marian had other symptoms too. She had what she describes as a 'sticking foot', meaning her foot would 'stick' to the ground and she would trip.
"It got to the point where I couldn't brush my teeth, I couldn't put my make-up on. I mentioned to my sister, and she said 'you've got Parkinson's'. She had seen my mother who had Parkinson's."
Marian went to her doctor that same day and he referred her on to a specialist who put her on Parkinson's medication. After six months, she had her diagnosis. She had Parkinson's Disease.
Things got better with medication but she has side effects.
"I have vivid nightmares and I re-enact dreams, so I fall out of bed. I had so many mouth ulcers from 'dry mouth' that couldn't eat at my nephew's wedding."
Marian says it's important to remember the work that carers do as they are often forgotten. "People call me every day to make sure I'm still around. My sister lives nearby and my niece is moving back from Australia."
With no cure, Marian tries not to think too far in advance.
"I don't worry; you'd stop living if you were to worry about it. I make hats, more as a hobby than anything else. It keeps my hands moving and I play bridge to keep my brain going. Some 30pc of Parkinson's turns into dementia. My mother had dementia. I try to keep active, do the gardening and if you get tired you just have to take a break."
Marian is chairperson of the Parkinson's Association in Mayo. "I needed someone to talk to, someone who knows what you're going through. People knew what I was talking about there."
"I'm determined not to let it beat me and I hide it well.
"But if I'm in a supermarket and I'm having a bad day I won't be able to open my purse and pack my bags at the same time and someone in the checkout queue might tut. That's where the awareness of the disease is important."
Marian says people should be watchful especially in queues or at the airport security queue: "When travelling you have to take your shoes off but then you can't get them back on. It's forgotten disease."
And she can't do everything she used to do. "I used to be an avid skier. I've been skiing since I was 22 but, because of my balance I can't. I had a bad fall and smashed my head."
She doesn't work any more. "I don't miss it as such now. I've made a life for myself. Moving from the city to the West Coast of Ireland is a big culture shock."
She lives life a little differently now. "You've got to live every day and not take life so seriously. You've got to get on with your life. I'm more tolerant now than I used to be. I think my personality has changed for better, I've calmed down."
Martina Sinnott started developing Parkinson's Disease at the age of just 34. She was a busy mum of four when she noticed she was getting muscle spasms and when she started losing the power in her right arm and wasn't able to peel carrots or make gravy for her children's dinner, she went to the doctor.
'It was suspected that Martina had a virus, and then chronic fatigue and then stress and depression. "I was beginning to think it was in my head. It came to the point where I couldn't butter a slice of bread and I was dragging my leg as well."
Her sister encouraged her to get a second opinion and after taking a series of tests she was sent to a neurologist. "On the first visit the neurologist told me that she was very sure it was Parkinson's but because of my age she wasn't 100pc sure." At 38 years of age, Martina was diagnosed with Parkinson's.
"At that time, I knew nothing about the disease. I came home and tried to cope with it, not knowing what it was.
'You really have to educate yourself about it. You don't know how to deal with it. It takes a while to get your head around it."
Martina didn't tell her children for a few months. "One of them was doing Junior Cert mocks at the time. I promised myself it wouldn't affect the children or their lives."
Now Martina says she is relatively independent and she manages her medication so she can get the best out of life.
"I spent a certain period of time feeling sorry for myself. One day, I was sitting in the kitchen and I knew there was so much I could do even if I couldn't do some things.
"I couldn't write so I took a Fás computer course and I got a job out of it. After 20 years at home I worked in an office for six years." She gave it up after Christmas as the commute was becoming too much.
"You have to work around it. When my medication wears off I can do nothing. I have an hour where I can do nothing. You just have to sit it out.
"But once the medication kicks in I have it two or three hours. I plan what I eat as protein affects my medication. Speaking to other patients helps and the idea that I might be helping someone else now makes me feel good, if I can help someone going through it."
Martina's philosophy is living in the moment. "I don't allow myself to think of the future because you never get from one day to the next. If you don't have hope you have nothing.
I have great hope that they'll make strides in research. I hope they'll come up with something. I just try to get through one day at a time."
World Parkinson's Awareness Week runs from April 7–13. The Parkinson's Association of Ireland will run a Unity Walk on World Parkinson's Day, Friday April 11. www.parkinsons.ie
Health & Living