Two fitness enthusiast brothers with HSP

Posted - September 2018 in HSPRF News

Their story of coping, adaptation and support

 

 

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Fitness enthusiasts still keep active despite disease that affects mobility

 

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.

 

Read the full article …. https://www.straitstimes.com/singapore/rare-debilitating-condition-doesnt-stop-these-brothers

 

In a cruel twist of fate, the two brothers were diagnosed with Hereditary Spastic Paraplegia in 2014. AsiaOne speaks to the pair to find out about their struggles, love for fitness, and staying tough despite all odds.

 

In 2011, ultra-marathoner Eugene Tan completed a gruelling 100km marathon, The North Face 100, which is deemed as one of the toughest races in the region. He took 16 hours to complete the race. With him was his elder brother and triathlete Kenneth, who never left his side; pedalling on his mountain bike with water and nutrition packs in tow.

 

Today, both Eugene and Kenneth can’t walk 10km without assistance.

 

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Kenneth, 28, and Eugene, 26, were diagnosed with Hereditary Spastic Paraplegia (HSP) in 2014. Kenneth likened the weakened sensation to the soreness one experiences after completing a marathon, when the muscles don’t function optimally. “Movements are slow and when you see an obstacle, your legs might not be able to react in time. Basic things like walking up the stairs takes a lot of concentration; looking at every step, and physically putting your foot on the next step.”

 

In the brothers’ case, the condition has been latent in their family history, until now. The rate of deterioration is also unique in individuals, and Kenneth, being diagnosed first, exhibits a more serious infirmity than Eugene.

 

Their zeal for adventure continued in the Singapore Armed Forces (SAF) when they enlisted for national service. Kenneth entered the Naval Diving Unit where he eventually signed on as a naval diving officer, while Eugene was drafted to the Singapore Armed Forces Commandos Formation. The brothers first discovered their condition while training for the yearly Individual Physical Proficiency Test (IPPT), a mandatory annual fitness test for Singapore Armed Forces (SAF) personnel. “I failed my IPPT, which has never happened before, because I got gold all my life. When I failed, I was shocked,” Eugene said. Connecting the dots led to a nagging suspicion that it was more than just a passing muscle fatigue. “The family actually got together and cried quite a bit,” Kenneth said grimly, recalling how his parents, both 61, had to grapple with their only children suffering from the rare condition.

 

Eugene turned to various avenues to escape reality, such as trying to build muscle mass for fun and eating more to put on weight – silly antics he said that his girlfriend, Tan Ci Hui, unreservedly put up with.

 

“After I was diagnosed, I slipped into depression,” Kenneth said, “I put on quite a bit of weight. I wanted to just escape from the world, so that was a very negative change.”

 

Wary that Kenneth might spiral further into the dark abyss of depression, his navy buddy and race partner Nicholas Yeo kicked into action. “To someone like Kenneth, a naval diving officer who has a bright future in his career – an avid cyclist, an athlete, a triathlete, an adventure-racer, HSP is worse than death,” said Nicholas, 28, a tax consultant. “It seems like someone played a huge joke on him, not only taking away his legs, but also his career and the ability to do everything that he loves.”

 

Wanting to fulfil Kenneth’s dream of completing one more race before his legs give out, Nicholas contacted their former coursemates from the 27th batch of Naval Divers to join the SAFRA Bay Run in 2014. One even flew home from Australia for the race. Like so many other races before, Nicholas and Kenneth crossed the 10km finish line together – this time with their band of brothers in tow. The message was clear: “Even when he falls, we will wait for him, and walk with him until the finishing line,” Nicholas said.

 

It was certainly a turning point for both Kenneth and Eugene, who knew then that their lifelong battle against HSP was a fight they didn’t have to face alone.

 

Kenneth said: “I would say that my biggest takeaway from this condition is that the focal support group can just be next to you. It comes from my brother, who understands me a lot better. Our parents have also been very supportive of whatever we do.”

 

Read the full article: http://www.asiaone.com/health/hes-not-broken-hes-my-brother

 

SOURCE: Singapore Straits Times June 17, 2018

 

Rare debilitating condition doesn’t stop these brothers

by Calvin Yang

https://www.straitstimes.com/singapore/rare-debilitating-condition-doesnt-stop-these-brothers

 

SOURCE: ASIAONE Oct 22, 2016

 

He’s not broken he’s my brother

by Deborah Wong and Victor Loh

http://www.asiaone.com/health/hes-not-broken-hes-my-brother

 

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