“Surround yourself with positive people and make sure you have something to look forward to,” says Frank who has held fast to this simple rule as he’s navigated life so far.
From a lifelong love-affair with dancing to travelling abroad with husband of two years, David, Frank credits keeping his mind and body active for managing the symptoms of Parkinson’s disease and regaining independence after developing Guillain-Barré syndrome last year.
On an otherwise ordinary Monday in August 2019, the day after Frank and David had returned from a weekend trip to visit family near Tamworth, Frank realised something was seriously wrong.
“I was watching TV on the couch and sipping a cup of tea. When I went to get up, I couldn’t.”
Thinking it was a stroke, David took Frank to the hospital and after a series of tests, Frank was diagnosed with Guillain-Barré syndrome. Discovering he had an auto-immune disorder that was attacking his nervous system was a shock.
“When I was diagnosed with Parkinson’s disease 10 years ago, my neurologist recommended exercise. I’m not a gym person but I love dancing. I was Line Dancing on Mondays and Thursdays, Latin American Dancing on Wednesday and I walked on the weekends. I was averaging 15,000 steps a day and living symptom-free. Dancing was my saviour and now I couldn’t do it,” Frank said.
Frank describes his first week in hospital as ‘depressing’. He thought that forever and a day, he would be bedridden or at best, housebound. He resisted the temptation to look up ‘Dr Google’ because he didn’t want to read negative things. When his rehabilitation transitioned from the general hospital to Royal Rehab, he noticed the positive difference straight away.
“The amazing thing about Stephanie and Gracia (from Royal Rehab) is that they listened to what I was saying. I told them what I could and couldn’t do and they designed a program for me,” Frank said.
“Their mannerisms and attitudes were unbelievably warm, encouraging and professional. There’s enough negativity from yourself, feeling like you’ll never get back to things. Their positivity made such a difference.”
Frank benefitted from a multidisciplinary program of allied health therapies, such as physiotherapy and occupational therapy, designed to achieve his rehabilitation goals — to regain his ability to stand and return to his active lifestyle. Guillain-Barré syndrome robbed him of the ability to stand from a seated position. It meant he couldn’t get himself off the toilet, go to restaurants, visit friends or even catch a bus or train.
Frank worked with the Royal Rehab team, three times a week, to strengthen his muscles with calf stretches, leg raises and core strength exercises with the aim of returning to his dancing and previous lifestyle. An adjustable chair aided his progress. When he could get up from the current height five days in a row, the chair was lowered an inch until it was at normal chair height. The team included hand and eye exercises to help with symptoms of his Parkinson’s disease and dancing to aid his recovery.
“When I told them I did so much dancing, they incorporated some Line Dancing. Eventually, I built up to a 5-minute dance while the physio was there,” Frank said.
Frank says he always looked forward to working with his Royal Rehab team because he felt so supported. He says they were there when he was strong enough to return home.
“The house I live in has 15 stairs. I was petrified about falling and breaking a hip or an arm. Gracia and Stephanie got me on crutches. They encouraged me in a nice way. They said ‘you might fall, but we’ll be there catch you’.”
Now independent again, Frank says it’s a huge boost to his confidence and mental wellbeing to be able to catch public transport and have lunch every week with friends. He still uses a crutch as a visual warning to help avoid being knocked by people when he’s out and about. And he’s excited about finally being able to get back on the dance floor and travel again.
“Tomorrow I go back to my normal Line Dancing class. I’ve no intention to do it all – maybe 15mins or half an hour, depending on how I feel,” he said. “Next week, David and I are holidaying in Adelaide. We’ll be visiting the vineyards and having dinner with friends. We’re also talking about a cruise or trip back to Germany, Ireland and England later in the year.”
Frank’s advice for others
Self-confessed ‘Frank by name and nature’, Frank says it’s important to try to get explanations in layman’s terms and to ask that medical people use words you can understand. He also says putting work and effort into your exercises is key. But his biggest advice is about mental wellbeing.
“Surround yourself with positive people you can trust. Three of my closest friends were really encouraging. Hearing ‘you’re doing a fantastic job’, even if I felt I wasn’t improving as quickly, helped me recognise progress. Also, stay connected to things you enjoy – visiting the art gallery, going out – make the effort so you can feel good about yourself.”