Parkinson’s Specialist Nurses in action
Parkinson’s Specialist Nurses are highly trained and experienced nurses based in communities of need. They are dedicated to supporting local people living with Parkinson’s.
These Nurses are funded 50/50 by Parkinson’s NSW and the Local Health District in which they are based. This series of articles invites clients to talk about the value of Nurses to their local Parkinson’s community.
Tony and Jenny Bienefelt – Supported by Vince Carroll and Amanda Buzio
Jenny Bienefelt had been trying to manage her husband Tony’s severe depression since January 2016 but also suspected he had Parkinson’s.
“I’d been Googling symptoms, but I just wanted to get him through the depression without a double-whammy,” she recalls.
“We live in Coffs Harbour and eventually we saw the fly-in-fly-out specialist in July 2017. He diagnosed Tony within five minutes of us walking in the door. That hit us like a ton of bricks.
“Even though I’d suspected it, we didn’t want to believe it and were in denial. The good thing was he put us in touch with Vince, the Parkinson’s specialist nurse.”
Many months after the diagnosis Tony and Jenny were struggling to find a treatment that would work for Tony, and in desperation contacted Vince for advice.
“The depression was setting in again and the treatments weren’t working, which was making the depression worse,” recalled Jenny.
“Tony couldn’t do up his shirt buttons or tie his shoelaces and he was starting to freeze. Vince helped us by organising a neurologist appointment and getting Tony onto Levodopa which has helped a lot.
“All we had to do was to show up for the appointment. He knows so much about Parkinson’s and you’re not alone trying to deal with things.”
Jenny also mentioned how important the Young Onset Support Group is for them both.
“Tony didn’t feel like seeing anyone, but Vince contacted the Support Group leader and asked him to reach out to us which made us feel welcome,” said Jenny. “Straight away we could see that he really cared about us.
“Vince also encouraged Tony to start exercising. Now Tony does the Parkinson’s Warrior program and boxing classes and even got back to playing tennis! When Vince first asked Tony for some fitness goals Tony thought tennis would be too hard. He plays twice a week now.
“Vince and Amanda, the other Parkinson’s specialist nurse, are the complete package. They’re a one-stop shop for support and assistance and answers.
“I feel very sorry for people who can’t access support like this. Even when Tony was rushed to hospital in agony in Easter 2018, a Parkinson’s Specialist Nurse was contacted.
“Amanda appeared and suddenly he was getting the immediate treatment he needed. We are very, very lucky we have people like Vince and Amanda in Coffs Harbour.”