Since being diagnosed with multiple sclerosis (MS) 16 years ago, Swan Hill resident Robert Hughes has made a lot of adjustments to his life.
Although he can walk unaided for a few minutes before getting tired, Robert’s main mode of transportation is his motorised wheelchair.
In an ambitious goal, he is planning to drive his wheelchair from Swan Hill to Melbourne in September to raise awareness of MS.
Robert said the journey, called “Little Wheels, Long Way”, had been many years in the making.
“The idea was to go three years ago, but I got too sick, so the trip is planned for September depending on my health condition,” Robert said.
“I want to raise awareness of how hard it is to do things when you have MS.
“For instance, just going to see a movie involves a lot of effort.
“There is still a lot that I’d like to do, but I nearly always need to have someone with me.”
Money raised through Robert’s journey will go towards MS Australia, the Neurology Department at The Royal Melbourne Hospital and Adult Day Services at Swan Hill District Health.
MS is a condition that affects the central nervous system, and has symptoms that include vision loss, pain, fatigue and impaired co-ordination.
Robert said his initial diagnosis was devastating, but it also came as a relief.
“Up until the point I was diagnosed, I thought I was going to have to go to a mental hospital,” he said.
“I had so many CAT scans and every time the results came back as normal. “Then I woke up one morning to find myself blind in one eye.
“The doctors told me I needed to see a specialist in Melbourne, so we went and that’s when I was diagnosed.”
Before he was diagnosed, Robert was a truck driver and also worked in the disability field.
“After I was diagnosed, I was pretty much told that I wasn’t allowed to work as a driver anymore,” he said.
Robert’s wife Margaret became his full time carer after he was diagnosed.
The couple have a 15-year-old daughter named Clarissa, who was born six months after his diagnosis.
Robert travels to Melbourne every six months to see a specialist and has monthly check-ups and treatments in Swan Hill.
“It’s not possible to get used to having MS,” he said.
“I might look fine, but a lot of the time things are hidden; there are days when I’m fine one minute and down the next.”
To keep himself busy, Robert has been a member of the Swan Hill Men’s Shed for about three years and also goes to Opals (Older People Active Lifestyles).
“Being a part of those groups allows me to have contact with others and gives me something to do,” he said.
“At Opals we have a guest speakers, do puzzles or quizzes to keep our minds active, and have a band play for us once a month.”
With less than six months to go until he sets off on his journey, there is plenty to prepare.
Not able to drive his wheelchair on highways, Robert will rely on back roads or alternative routes to get to Melbourne.
In the lead up to the big journey, Robert and his team will be doing test runs around the local area.
With the wheelchair going a maximum speed of nine km/h, Robert said he was hoping to cover 60 kilometres each day.
“That’s about six to seven hours of driving,” he said.
“I’ll need to rest every now and then, plus weather and my health will be big issues we’ll have to deal with day-to-day.”
Robert said he was grateful for all the backing his cause had received so far.
“The support locally has been fantastic, but getting everything organised is proving to be a lot harder,” he said.
“This journey will present a lot of challenges, but I’m determined to do it.
“As far as I’m concerned, there’s pretty much nothing you can’t overcome.
“But as much as I wish it wasn’t true, things cost money and this trip will cost money to complete.”
Robert and his team of supporters had a table at Harmony Day last Saturday with MS information and fundraising tins.
Money will be going towards funding Robert’s journey and his chosen charities.
To learn more about Robert’s journey, head to the “Little wheels long way” Facebook group.
Donations to Robert’s cause can be made at www.mycause.com.au/page/169503/little-wheels-long-way.
