Two decades ago when Robyn and Glen Armstrong bought their home in Sapphire Beach near Coffs Harbour, it was the first house they hadn’t built together.  

 Glen was a builder and they’d built a number of houses, while Robyn was a nurse. Both really wanted to be close to the beach and with no land to buy, they settled on the two-story house where they still live. 

 Now that house is for sale and the plan is that once that’s sold, Robyn and Glen will move to Wollongong on the South Coast to be nearer family and friends. 

 They had enjoyed their beach lifestyle for many years, but things began to change four years ago when Glen, then 72, had a serious reaction to the anaesthesia following knee-replacement surgery. 

 “Problems started straight after the knee surgery,” said Robyn, who is now 74.  

 “The surgery was routine, and I’d just said ‘see you this afternoon’ but when I got there, he was acting really erratically and weird. We hadn’t seen serious issues before, though there were a few small mental issues when I look back. People would ask ‘is Glen OK?’. I think I didn’t want to believe anything was wrong. 

 “But as things evolved his GP said he thought Glen might have Parkinson’s. He’d never had a tremor, but he was started on medication. He couldn’t go back to work as a builder, but he was able to join an exercise program and used to drive himself there and back home. 

 Meeting Nurse Vince Carroll 

 “The PD Warrior program (specifically designed for Parkinson’s patients) was where Glen first met Vince Carroll, the Parkinson’s Specialist Nurse who has been so helpful to us both. I had already met Vince through working in the hospital and I’d thought then he seemed like a nice person.  

“Unfortunately, Glen’s symptoms became worse and eventually he couldn’t drive himself anywhere. I quit working as a nurse a few years ago as he needs me for full-time care.”    

In October 2023, Vince suggested to Robyn that it might be helpful if Glen saw a movement disorder specialist who was visiting the Coffs Harbour area. 

“Through this specialist, Glen had a checkup which included an MRI,” said Robyn.  

“We discovered Glen Parkinson’s symptoms were a result of a fistula on the surface his brain that caused an embolism. Unfortunately because it took so long to diagnose, Glen’s gait had been seriously affected and he had started to develop dementia.  

“He needs me 24/7. I shower, shave and toilet him. He has serious bowel issues which can occur day and night. I’ve applied for help through My Aged Care, but that was five months ago, and they said they didn’t have any packages available. I don’t know when they will – apparently it depends on their funding. It wrecks your life because mostly you can’t go anywhere.  

“If Glen is feeling good, I might go out with him to get the groceries and he might sit in the car for a while or even walk hanging onto the trolley. Sometimes he can sit and have a coffee while he recovers.  

Support from good friends 

“We do have good friends here and if Glen’s up to it we have a breakfast together on Sundays. They help him get up and help him eat. I get one morning a fortnight respite care but otherwise he cannot cope without me.” 

 While Robyn has a lot of nursing experience, she relies on being able to call Vince to discuss any issues with Glen. 

“I knew nothing really about Parkinson’s before Glen was diagnosed with  it,” says Robyn.

“Vince is a wonderful person to consult, and someone to talk things through with. Even though Glen can no longer really have meaningful conversations with anyone, he likes to call Vince – who even offers to deliver groceries to him.   

“Just having the opportunity to hear Vince’s voice seems to calm Glen down. It is not unusual for Glen to say to me ‘why don’t we ask Vince?’ about something.

“Once we get the house sold and get settled in down in Wollongong, I will be able to have more company and help. It will be good to have our own families close.  

“I cope by just dealing with one day at a time. If there is a problem I try and sort it out with a doctor or I call Vince. It’s great to have him to talk to because he knows so much about Parkinson’s, dementia and caring for patients with complex illnesses as well as supporting the carers like me. “ 

“I don’t want to put Glen into a nursing home until I really cannot care for him any longer. I’m starting to have problems getting him out of bed, but I know that he didn’t want to go into a home – and I wouldn’t want to, either. So I just try and manage things one day at a time.”