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.

Barry Whiting, 69, grew up 36 kilometres east of Tumut, as his father worked for State Forests and they lived in a forestry house.

“I did home schooling there with my two brothers and two sisters,” Barry recalls. “I began working for State Forests when I was 16 in the seedling production nursery at Bondo as a general labourer. At 18 I moved into Tumut.

“I continued working for State Forests at Bondo nursery, travelling the 36 km out to work every day. I worked my way up to nursery manager. In 1997 the nursery was relocated to the river flats just out of Tumut. I helped establish the new nursery as all the other regional nurseries were closed, and we were producing four million pine seedlings and employing up to 40 people during the season.”

After 28 years in the forestry industry, Barry decided it was time for a change.

“I purchased a fishing, camping and outdoors store in the main street of Tumut and I had that for 17 years,” he says. “I sold the store in 2016 and retired. My wife and I did some trips overseas and some in Australia.”

A strange symptom

But by 2021 Barry was concerned enough with a strange symptom to make a trip to a GP to see why he had such a ‘fuzzy head’.

“I woke up one morning and I just felt very vague,” he explained. “The doctor prescribed an antidepressant for two weeks as a trial. But after two weeks there was no clearing of my mind, so he did a Parkinson’s movement assessment and tried a Parkinson’s medication.

“It just freed up everything and I tried to get into a specialist, but it was during Covid. Finally I saw one in late December, and I was told I had mild Parkinson’s.

“That was a shock and took quite a while to get my head around. I’d had a tremor in my right hand for a good ten to 15 years while I worked in the shop, but I never took any real notice. My wife noticed I was walking slower and stooped, but I just put that down to old age.

‘Being in a small country town there was no real support unless you travelled, so I decided it was time to have a support group here.

“I had no idea of where to start, but a coordinator from Murrumbidgee Health got me onto Parkinson’s NSW. Once I got in contact I had all the information from there. They were really helpful.”

Flyers and radio

Initially, Barry produced a flyer to distribute in the town.

“It was just to say we were starting up a new group for people with Parkinson’s and their partners or carers,” says Barry. “The local radio station was amazingly helpful and just from there and with the flyers around town we had 11 or 12 people turn up at the first meeting, around June or July 2022.

“I organised speakers every month. The local newspaper also ran stories on us, especially when it was Parkinson’s Awareness Month and that also got the word out, they were just great.

“More people came from small outlying towns than from Tumut, and meetings aren’t for everyone. We ended up with 16 members and carers. My wife did a carers’ meet-and-greet get together every second month, too. When I started that was one thing I always hoped would happen.

“It was really great for me and my journey with Parkinson’s. I found it very rewarding. People could come and get advice, just going off my experience of being diagnosed and not expecting it.

“I was feeling that there had to be more people out there in this situation. I did some research and some calculations of the likely numbers. Prior to this I’d had a brother-in-law whose father had Parkinson’s and I thought it was just a tremor, not another fifty-odd symptoms.”

Move to the coast

After several years of leading the Tumut support group, Barry and his wife decided it was time to move to the coast, to have warmer weather and be closer to family. They have handed the group over to others to run and it continues.

“We moved to Warilla and we now also have the benefit of all the medical facilities around here,” says Barry. “I’m able to see a new neurologist, I’ve joined PD Warrior classes and have the gym plus the beach and walking and fishing. They say it’s winter here now (in June) but where we’re from it’s really warm. That’s a big help with the Parkinson’s, the body thermostat doesn’t work as well.

“We are renting and looking around to buy. We see the grandkids every week now, not every few months. My wife and I recently joined Kiama Support Group which is really, really good. It’s so much better with more medical care here. Before we’d have to travel an hour or more.

“We have to make the most of the cards we’re dealt. Keep up the fight, get up and dust yourself off and get on with life.”