My [Parkinson’s] Life
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.
Steve Schiemer’s life journey has taken him from Coolah NSW (population 900) to a university degree in Business, an Australian then international career as a Personal Trainer and fitness industry entrepreneur – then to a Parkinson’s diagnosis at age 40, followed by a personal and professional reinvention, and a seat at the boardroom table of Parkinson’s NSW.
“I have always loved the gym and fitness and was very much involved in martial arts while I was studying at Charles Sturt University, in Wagga,” said Steve.
“Then I became interested in becoming a Group Fitness Leader. Only thing was, I made my decision just two weeks before the course began – so I worked for that entire period participating in 4 classes a day just to get an idea of what I was supposed to do. I passed with flying colours and was teaching two weeks after I completed the course.”
That determination has been a feature of Steve’s fitness and business career ever since. He moved to Sydney where he rose to become a senior manager in the fitness industry, while training and competing in Competitive Aerobics.
A visit to a fitness studio to evaluate a potential Step instructor for Steve’s business had a very positive outcome. Rebecca indeed won the instructor’s role – and they have also been partners in life and business for the past 23 years.
Then came a move to Germany.
“At the top levels of the fitness industry, you look forward to presenting at conventions,” explained Steve. “At the time, there was only one convention per year in Australia so we decided to move to Germany for six months where we would have the opportunity to showcase our skills at multiple conventions.
“Well, six months turned into 14 years – eight in Germany and six in the UK where we established a business selling top-of-the-line German manufactured fitness equipment throughout the UK,” he said.
During this period, Steve added another string to his bow. He became a television presenter, making regular appearances on the Ideal World home shopping channel to demonstrate his company’s fitness equipment.
It was also around this time that Steve began to show the first symptoms of Young Onset Parkinson’s – although like most people he did not recognise it at the time.
“I noticed some weakness in my left hand when I was doing equipment demonstrations, but I attributed it to a pinched nerve,” he said.
This symptom was followed by tremors in his hand and hamstring muscles – which prompted him to visit a General Practitioner.
That was the start of a year-long period of multiple medical consultations at which GPs and neurologists told Steve he was too young and far too fit to have Parkinson’s.
Finally, as his condition deteriorated, a neurologist tried him on a course of Levodopa. There was immediate improvement, leading to a definitive diagnosis of Parkinson’s at the age of 40.
“Rebecca and I were both stunned by my diagnosis because we had been told repeatedly that I was too young and too fit to have Parkinson’s. It was a shock, and frankly I lived in denial for about 18 months after that.
“I couldn’t even look at a person with Parkinson’s on TV or the internet; I’d have to turn away,” he said. “But eventually it became harder and harder for me to walk so I could deny it no longer,” said Steve.
Steve and Rebecca were by this time living back in Australia. Steve was on four high doses of Levodopa daily and feeling very depressed.
That led to his first contact with Parkinson’s NSW; he and Rebecca made an appointment with a Parkinson’s Counsellor.
“Counselling was a turning point in my Parkinson’s journey,” said Steve. “That support enabled both of us to change our whole mindset about the disease and think about how we could fight it.”
Steve fell back on his professional skill and personal passion: exercise. He took up boxing because it combines so many different factors including balance, coordination, and continuous movement.
He also counsels: “Seek expert advice on your nutrition and focus on exercises that get you up off the ground – including squats and push-ups.”
The combination of an intense exercise regime and sound nutrition has worked to the point where Steve has almost reversed the effects of his Parkinson’s.
Today he is back in the fitness industry, teaching boxing classes and personally training and innovating exercises for people living with Parkinson’s.
Eighteen months ago, Steve was invited to join the Board of Parkinson’s NSW based on his business skills, fitness knowledge and life experience with Parkinson’s.
“My skills do not match the level those of some of the other Board members who have really strong corporate backgrounds, but what I bring to the table is an understanding of the fundamentals – both of business and life with Parkinson’s.
“Every organisation needs governance, plans and numbers to run efficiently. I view my role as making sure those considerations do not obscure the real needs and daily challenges of people who are living with Parkinson’s every day of their lives,” said Steve.
In addition to exercise and representing the Parkinson’s community, Steve has three other passions in life: His wife Rebecca (“…my greatest supporter”), his dogs, and “…I never miss a chance to play a game of darts!”