“In the 36 years that MS has been sitting on my shoulders, medicine has made great progress,” says MSWA Client Bob Masek. “I am convinced that multiple sclerosis will soon become a thing of the past for humanity.”
Since diagnosis in 1986, Bob has faced – and overcome – many challenges. Yet, his sense of hope for the future – as well as his sense of humour – remain firmly at the forefront of everything he does.
From Czechoslovakia to Kalgoorlie
In the early 1980s, Bob, his wife Maria, and their two young boys, fled their home in Czechoslovakia for political reasons. In Vienna, they were granted political refugee status and, sponsored by the Czechoslovak Association in Perth, they flew to Australia in April 1985.
Two months after arriving in Perth, Bob started experiencing symptoms of differential body temperature. “I attributed it to a sudden transition from minus 25 degrees freezing Vienna to 40-plus degrees temperature in Perth,” recalls Bob.
He brushed it off, focused on getting his family back their previous living standard. “Even though I didn't know English, I had good luck and was offered a well-paid job as an underground miner,” says Bob, who accepted the job at the Lake View Shaft gold mine in Kalgoorlie.
When he began experiencing pins and needles, blurred vision and the loss of some strength in his legs, Bob sought medical help from a local physician. After a neurological examination and a lumbar puncture, Bob’s GP told him, "Bob, I'm really sorry but I'm convinced you're suffering from an incurable disease called multiple sclerosis.”
As it was the 1980s and prognosis of and attitudes towards MS were quite different, the GP added, “You have a young family, so I would give you a piece of advice: don't mention your illness to anyone, especially your employer.”
A 12-year secret
Bob took his GP’s advice. “MS became my closely guarded secret for a long period of 12 years.”
“Two years after the diagnosis, I suffered from severe depression caused by the question ‘Why me?’ and by insecurity and fear for the future of my family.
“But our boys needed me. I wanted to work at all costs until they finished high school. With God's help, it worked out for me. They both graduated from high school with high distinctions and wanted to study at university. I prayed again to be strong enough to keep working.”
It’s with pride that Bob speaks of his sons’ successful careers: one now an Associate Professor on ECU and the other working for an American oil company in Houston.
It was not until his symptoms progressed to the point that he was no longer able to work that Bob began to speak openly about having MS.
Changing attitudes to MS
Thankfully, today, treatments and societal attitudes towards MS have made significant progress since the 1980s.
Bob now lives in Waikiki and has support from family and friends and from the services he receives from MSWA.
“MSWA is my NDIS provider. My OT, Physiotherapist and Exercise Physiologist look after me very well.
“Physiotherapy is really beneficial and important. For example, I was given exercises for a sore shoulder and after a week I no longer had to take painkillers. I could name a number of similar examples in my years with MS.”
Today, Bob struggles with chronic neuropathic pain, especially in the feet and legs, painful cramps, balance issues and vertigo. In 2009, Bob’s compromised immunity resulted in him contracting viral encephalitis and meningitis. Miraculously, he survived, but he became paralysed from the waist down. “Since then, I've been permanently confined to a wheelchair,” he explains.
Pictured: Bob and Maria – Bob’s wife and carer of 46 years – playing a Chair Ping tournament in the MSWA Rockingham gym.
The invention of 'Chair ping'
In 2021, Bob’s MSWA Physiotherapist suggested that table tennis would be a good form of therapy. Bob purchased a ping pong table but soon discovered the table was ill-designed for a player in a wheelchair.
“I had parallel bars stored in the shed, and a melamine board that was the perfect dimensions, measuring 1200 x 2400 mm. It was love at first sight. I married the bars with the melamine board and Chair Ping was born,” recalls Bob.
“For a better measure, I also extended the length of the standard butterfly bat by 16 cm.”
Bob and Maria’s modified ping pong table invention was such a hit that there are now three Chair Ping tables installed in three MSWA Outreach Centres.
“A big part in the design of the table and the promotion of Chair Ping was down to my Exercise Physiologist, Luke Everett,” credits Bob.
See a game of Chair Ping in action:
A positive outlook
Over the years, Bob came to realise that his stress, uncertainty and worry for the future was making his condition worse. His faith and his humour were the solution to changing his mindset.
“I turned my problems into the hands of God. And it helped me a lot. I also really like humour and I laugh every day and often hoot with laughter. Positive attitude, active mind and even Chair Ping are instruments that make you forget about MS.”
“I've been living with MS at least 36 years and I still have a few plans that I intend to complete. Every man has to die and I prefer to do so with memories, not dreams.”
Bob is hopeful about the modern advances in MS research, and is confident that a cure is within reach. “I believe that I will live to see it, and die calmly from marasmus senilis (old age),” says Bob, with his trademark humour.
MSWA provides support and services to people living with neurological conditions in Western Australia, as well as funding vital research into these conditions.