• Grey Australia have built a bike to mimic symptoms of MS. (Grey Australia)Source: Grey Australia
A team of experts have built a bicycle with multiple sclerosis symptoms in an effort to shine a new light on the incurable illness.
By
Caitlin Chang

4 Feb 2016 - 2:54 PM  UPDATED 4 Feb 2016 - 4:54 PM

This bike may look like a regular two-wheeler, no different from any of the others in the Collingwood workshop in which it was built.

However, once you put your feet on the pedals, you’ll notice that riding this bike is anything but smooth. And that’s the whole point. This bike has multiple sclerosis.

Advertising company Grey Australia have brought together a team of bike builders, a neurologist, a physiotherapist, and MS sufferers to create a bike that mimicked the symptoms of the autoimmune disease that affects the central nervous system. Like many people with the chronic condition, the bike looks perfectly healthy; it’s only once you take a closer look that you start to notice the finer details.

“MS is such an invisible disease, most of us just look fairly normal,” says Australian cycling Paralympian Carol Cooke AM. “I wish I had a dollar for every time someone said to me, ‘but you look so good’.” Having lived with MS since 1998, Cooke facilitated the group that came together to decide just what symptoms the bike would feature. “There are a lot of symptoms that aren’t on the bike but you can only do so much.”

 

Around two million people worldwide, including more than 23,000 Australians, have been diagnosed with the disorder. Affecting both the brain and the spinal cord, MS can lead to symptoms such as vision problems, difficulties with balance and walking, sensory changes, fatigue, memory and cognitive difficulties, and chronic pain.  

According to neurologist Dr Marion Simpson, who also worked on the project, the bike “does a good job in conveying the unpredictability of MS symptoms. They’re very different between different patients,” she explains. “The bike conveys that symptoms aren’t static, and they’re not the same for everyone with MS.”

The bike conveys that symptoms aren’t static, and they’re not the same for everyone with MS

MS can be diagnosed at any age but it most commonly presents in people aged in their 20s and 30s. “It particularly affects young adults,” explains Dr Simpson. “It affects both sexes, but women much more commonly than men.” In fact, roughly three times as many women are diagnosed with MS as men. A diagnosis is made after a patient presents with a combination of clinical symptoms and undergoes a neurological examination.

So how exactly does a bicycle mimic these MS symptoms? Firstly, they haven’t built some lightweight carbon fibre frame. Made from extremely heavy materials; it’s a huge effort to ride this bike anywhere. This is to replicate fatigue, Cooke explains. “When you wake up in the morning, even after eight hours of sleeping, it’s just very hard to get your body going.”

The designers also wrapped the handlebars in small ball bearings, pieces of wire and tape, which is about as comfortable as it sounds, to demonstrate sensory changes. “MS frequently causes changes like numbness, tingling, pins and needles, or pain,” explains Dr Simpson. “It was difficult to think about how we would translate that into the bike.”

Facing the unpredictability of daily life is another aspect of MS the group wanted to highlight. “They’ve taken the teeth out of the back cogs so if you go to change a gear, it might not do what you want it to do,” Cooke says. “There are times where we might say, ‘Ok, walk’, and one leg is lagging behind and just not doing what you want it to do. There are also two different pedals on each side. One leg might be slipping off on one side, again, to show that sometimes your body is just not going to do what you want it to do.” Customised with ‘untrue’ (or bent) wheels and missing spokes, it’s also designed to make riders feel like their balance is off.

One common experience facing people living with MS is pain. “We do live in pain all the time. The majority of people with MS will experience pain at some point in their life,” says Cooke. “The bike has a BMX seat of really hard plastic to mimic that feeling.”

MS is not going to kill me; I am going to live just as long as everybody else but it’s something that never goes away.

Fitted out with these uncontrollable and unpredictable alterations, the bike is ultimately an educational tool. “You don’t know what somebody else is going through,” Cooke says. “Being diagnosed with a chronic illness has changed my ways in that perspective. I used to get impatient with people but then I became that person who was having a bad day and couldn’t walk very fast. MS is not going to kill me; I am going to live just as long as everybody else but it’s something that never goes away."

While the bike in no way compares to what it’s like to actually live with MS, this innovative approach may make it easier to understand. “A lot of patients say to me that before they were diagnosed, all they knew about MS was the MS Read-a-thon," Dr Simpson explains. "We think about MS being equated with severe disability but now we have good treatments and for some patients at least, that’s really changed things. It doesn’t necessarily equate to severe disability.”

“The flip side is that while people with MS may look normal, they may be struggling to push through those symptoms."

Watch the video below to learn more about the campaign.

 

Want to try the bike? The bike will be ridden in the MC Melbourne Cycle on Sunday March 6. Sponsor the bike or register your interest at thisbikehasms.com.au.

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