Imagine jumping onto your bike and preparing to ride, but you can’t maintain your balance, your hands are uneven, and you have no control over your body. That’s what riding a bike feels like with multiple sclerosis (MS).
Cycling Paralympian, Carol Cooke AM, 54, Australia, has led a team of health experts, bike mechanics and people living with MS, in the design of a bike to raise awareness of the reality of living with MS.
The MS bike simulates and highlights the many physical difficulties and struggles that the 23,000 Aussies living with MS experience throughout their lives.
Advocacy group, MS Australia, describes the often debilitating neurological condition as a chronic disease disrupting nerve impulses within the human brain, spinal cord and optic nerves,1 while noting, no two cases of MS are ever the same.2
Speaking to the Huffington Post, Cooke explained how post- her MS diagnosis at the age of 36, many of her work colleagues failed to understand the physical demands of the disease.
“While I was employed full-time, I was working in logistics, and they expected you to put in long hours,” said Cooke.
“I would get to a point and say ‘I had to leave’, because I was so fatigued.
“We all look very good and we look healthy, but it’s the symptoms we deal with on a daily basis that people don’t get,” Cooke said.
The bicycle looks functional, just as many living with MS may appear. However, closer inspection reveals a misaligned frame made with heavy wheels, broken cogs causing the gears to unpredictably change, a low-skewed seat, and handle bars, which include ball bearings that cause pins and needles to stimulate tinnitus.
The aim of the initiative is to challenge, educate and offer people an insight into the daily challenges of those living with MS, in order to spread empathy and respect.
- MS Australia, What is MS?. Available at https://www.msaustralia.org.au/what-is-ms.
[Last Accessed February 12, 2016]. - MS Australia. Health & Wellbeing. Available at https://www.msaustralia.org.au/health-wellbeing/living-with-ms [Last Accessed February 12, 2016]
Raising awareness for diseases and conditions which are not easily detected in sufferers is such an important issue for todays society. I feel we have become a culture of visual attention and what we see in the world often effects what we consider noteworthy of attention. Diseases which invoke a visible symptom often receive the most awareness since photos, videos or other such forms of media are posted online for all the world to see and share. The diseases such as MS which often cannot be easily spotted in a person or even diagnosed are the diseases which deserve attention, regardless of their apparent lack of appearance in society due to the danger of their symptoms.
Particularly because those who suffer have such a broad spectrum of symptoms varying in the degree and occurrence, goes to show how these types of diseases require more research and development to understanding how they work.
I was initially drawn into this blog post by the focus on bikes in helping raise awareness of a disease like MS, partly because I have experience in seeing how bicycles have helped someone subdue symptoms of Parkinson’s by regularly riding one. I was unaware that the bike used in this post was to raise awareness until reading further in and it occurred to me that this type of device is crucial in society today to help overcome visual barriers. These diseases are not commonly recognised and so by physically showing the public how MS, Parkinson’s and other such diseases affect the lives of sufferers, maybe this will improve attention to research efforts and progress in the developmental treatment that it deserves.