Having Parkinson’s is just one aspect of a person’s life story. We want to share more stories of the varied lives of people currently living with Parkinson’s and their carers.

Michael Costello and Graeme Haigh

Michael Costello and Graeme Haigh met more than 40 years ago when Michael took on a second job working as a waiter and Graeme was a friend of a friend, who introduced them.

“We were just good friends for a while,” says Michael, “but now we’ve been together for 43 years.”

While both had busy working lives with Michael also writing plays, a drama for the ABC and a novel and both enjoying overseas holidays, their lives changed in late 2015 when Michael was diagnosed with Parkinson’s.

“I noticed his left arm was swinging when we were walking,” recalls Graeme. “I was aware of Parkinson’s but I wasn’t aware of how serious it was. It was a bit of a shock when we were sent to a neurologist.”

Michael says he went into positive mode, determined to find out as much as he could.

Had to get on with it

“I wasn’t going to waste time,” he says. “It was terrible to have this in our retirement, but I had to get on with it. I got onto Parkinson NSW’s info line and was soon speaking to a beautiful woman about what was available. It was so important for people to get the right information when you’re adjusting to it.”

As Michael and Graeme assessed their new situation, their shared housework also gradually needed to be modified.

“We had always shared chores and cooking meals,” says Graeme. “Now if Michael is particularly off, I do a little bit more. Michael doesn’t drive now, so if he needs to go to the doctor’s or the chemist I drive. I don’t have a problem with that.”

A few years after Michael’s diagnosis, the couple came across The Residences at Cardinal Freeman in Ashfield, which was just opening.

“We realised our house and garden in Dulwich Hill was going to get too much for us,” says Michael, who is 73. “We’ve been here eight years now; there’s a lot of activities you can do. For instance, every Thursday night we take a plate of food to the piazza area for socialising over a couple of drinks. It’s very important to keep socialising while you can. Don’t shut yourself off; just get out while you can.”

“Michael did a lot of the work of looking after a bigger house and we knew that couldn’t continue,” says Graeme. “We have a three-bedroom, two-bathroom unit which is manageable.”

Maintaining routines

“We live in the same area as our house and we still go and do things like go to new restaurants or go to Summer Hill,” says Michael. “We try to do things together and have our little routines.”

Michael and Graeme have also worked hard on fundraising for Parkinson’s NSW, including three exhibitions and sales of Michael’s paintings at their village, which have raised substantial amounts from donations for Parkinson’s NSW.

“A lot of people don’t realise that I have Parkinson’s,” says Michael. “But they don’t see me getting out of bed in the morning before my first lot of medications! It’s a progressive disease and I work very hard with exercises and staying as fit as I can. That is vital. It has progressed more over the past two years but you’ve just got to help yourself as much as possible. I’ve always had a positive outlook and I think it’s just the way I am.”

“We thought our retirement was going to be travel but now it’s harder for Michael,” says Graeme. “We’ve done some cruises which are more manageable because you’re not always unpacking and packing, but if there are flights involved as well that’s more difficult now.”

With such a long relationship before diagnosis, challenges were not unusual for Michael and Graeme, and they deal with challenges in their own way.

“I know that my executive functions are changing now,” says Michael. “My memory is not as on the ball as it was but I’m still able to wash and shave and dress myself. Graeme is aware that my cognition is changing slowly. If we’re going out, I can get anxious about odd things, like when is the bus going to arrive; for no good reason.”

“I know that if Michael is doing something, like cooking a meal, I’m not going to interrupt him to ask him something unrelated,” says Graeme. “We manage for now. If I think the stress of things is having an effect on me then I will just go into a room and close the door for a while. We try to the best of our abilities.”

“In 43 years there have been many things we’ve dealt with,” says Michael. “We have trust, love, and dependency on one other. Graeme is my carer, and my spouse. How lucky am I?”

For information call the Parkinson’s NSW InfoLine on 1800 727 567