Rare debilitating condition doesn't stop these brothers
Posted by : Fitness enthusiasts still keep active despite disease that affects mobility
Category : Stories of RESILIENCE & GRIT
June 17. Calvin Yang, Straits Times
Six years ago, brothers Kenneth and Eugene Tan - who have completed countless marathons and adventure races between them - could easily finish a 2.4km run in under 10 minutes. Now, former naval diving officer Kenneth Tan, 30, and Mr Eugene Tan, 28, who was a commando during his national service, are unable to walk long distances without help. Even basic things like climbing the stairs take longer. They were diagnosed with hereditary spastic paraplegia - a rare neurological condition characterised by progressive stiffness and weakness of the legs - around four years ago. It usually progresses from a mild leg stiffness to the person needing a walker or wheelchair to get around. The lifelong condition, which has no cure yet, affects about one in 500,000 people. "I felt that it couldn't be that unlucky that both my brother and I have it," said Eugene, who found it hard to accept the news initially." I cried almost every day.
TWIST OF FATE
I always identified myself as a fit person, and to have all these taken away from me was a huge shock. After the initial shock, the brothers decided not to let their condition prevent them from leading normal and active lives. Kenneth, who swims and cycles every week, is pursuing his childhood passion as a full-time miniature artist - modelling and painting clay into miniature game pieces and collectible sculptures. Eugene recently married his university sweetheart, a 26-year-old public servant. The physical therapist, who helps others to manage their mobility, enters darts competitions. It was in 2012 when both siblings noticed they were not able to perform as well as they could in their Individual Physical Proficiency Test, a mandatory military fitness test. Eugene, who had always achieved the gold award, failed his test that year." I felt okay during the run but failed my standing broad jump and shuttle run, which has never happened before," he said." It was then that I realised something was wrong." Kenneth, on the other hand, had problems running. "It started with me dragging my feet whenever I ran. Then it progressed to tripping and fatigue, which was uncharacteristic for a person of my age and fitness," he said. No matter how hard they tried, they did not improve. After seeking medical help, Kenneth was diagnosed with the condition in 2014. Eugene, who used to take part in ultramarathons, was diagnosed a few months later. The disease is passed down in the family though an abnormal gene. Those with it cannot move properly because the brain cannot communicate effectively with the legs. When their parents, both 63, learnt that their sons suffered from it, they found it difficult to grapple with the fact. Kenneth, who served as a naval diver for seven years till 2014, said: "I always identified myself as a fit person, and to have all these taken away from me was a huge shock. "Now, walking feels mildly uncomfortable and unstable. Every month, Kenneth, for instance, trips and falls at least once."
A lot of concentration is needed to focus on each movement. I am conscious where I place my foot so I don't fall," he said. Fortunately, the siblings are not fighting this lifelong battle alone. Their family and friends, including Kenneth's Naval Diving Unit buddies, often encourage them and hold on to their arms on days when they are not walking well. Kenneth, whose colleagues would even accompany him to work, said: "These are small gestures people often take for granted, but they mean a lot to us." Their partners are also standing by them. Kenneth, who has been dating a 26-year-old public servant for more than a year, said she walks slowly to match his pace. "When I do fall, she understands and encourages me to get back on my feet," he said. "I hope one day I am able to do the things I have done in the past, such as climbing mountains and going on long treks. I wish to show her that aspect of life I used to have. "Eugene, who met his wife in 2011 when they were studying at Nanyang Technological University, said: "She will never complain about my condition. She is always there to hold my hand and walk with me."
Despite their condition, the siblings, who both live in condominiums in Bukit Panjang, have not given up on sports entirely. In the initial years after their diagnosis, both went on treks, using walkers, along the Green Corridor and to Bukit Timah. They now pursue different sports to slow the effects of the disease. While Kenneth cycles and swims for 30 minutes to three hours a week, Eugene plays darts for three to five hours, which involves "a lot of walking up and down". Besides staying active to maintain their mobility, both rely on physical therapy, which includes massages to stimulate inactive muscles. The brothers have also grown closer as a result of the condition. They often share medical updates and talk about their good and bad days battling the disease. "When my brother shares what he feels about the condition, I fully understand what he is going through," said Kenneth." He has my back and I have his, because we are in this together.""