Faith

Diagnosed with Parkinson’s, he built a community of warriors who fight together

On World Parkinson's Day (April 11), we salute those battling this degenerative disease and their caregivers.

Peck Sim // April 9, 2024, 4:24 pm

Chua Teck Koon

Chua Teck Koon (right) with his wife and caregiver Yen Ching. All photos courtesy of Chua Teck Koon.

The day Chua Teck Koon, 66, received the devastating diagnosis of Parkinson’s disease, his first thought was: “Why me?”

Three days later, his question became: “What now?”

“The moment I accepted that I had Parkinson’s, I was determined not to isolate myself and wallow in self-pity,” he said.

“So I asked myself, ‘How can I make a difference to others with the same medical condition?’”

Shortly after, he founded the Parkinson Befrienders Support Group (PBSG) with 12 other Parkinson’s patients. Today, the group is a community of over 80 patients who gather regularly for walks and fellowship.

“I’m going to make a difference”

Like many Parkinson’s patients, Teck Koon’s symptoms started small. Seven years ago, when he was 59, he noticed his current signature stopped matching his specimen signature on documents.

Next, he started to struggle with speech – members of the Bible study group that he led could not hear him, even though he was speaking at the top of his lungs. At times, there were also lapses in his speech.

On top of that, he found he was walking more and more slowly.

Teck Koon consulted a neurologist, who delivered the grim news: he had Parkinson’s disease, an incurable degenerative disorder that affects the nerves and the parts of the body controlled by nerves.

Teck Koon with some of the Parkinson warriors in the walking group.

Given his symptoms, Teck Koon had to step down as a deacon of his home church Bethesda Hall Depot Walk and stop leading Bible study.

His unsteady gait robbed him of confidence. He feared carrying things and dropping them. 

“God had already prepared me for this. So my question changed from ‘Why me?’ to ‘What now?'”

Reflecting on his condition, he wrote in Beating The Odds, a book of testimonies from Parkinson’s patients in Teck Koon’s Befrienders Group:

“I came across a verse that said that God chastises those He loves (Hebrews 12:6). I felt that God loves me so much that He chastised me not once, not twice but three times.”

It was those three instances of “chastisement” – a challenging job change, his son contracting pneumothorax and his daughter going for brain surgery – that Teck Koon came to understand that even in the worst of times, God’s mercy and grace are always sufficient for him.

Thus, when he discovered he had Parkinson’s, Teck Koon thought: “God had already prepared me for this. So my question changed from ‘Why me?’ to ‘What now?'”

He decided: “I am going to make a difference in the lives of others who are in the same boat as me.” 

Fighting Parkinson’s together

When Teck Koon discovered Parkinson Society Singapore (PSS), he lost no time in joining the activities organised by the society. When he turned 60, he retired from his job to make time for physiotherapy, qi gong and yoga sessions at PSS. 

“PSS is so vibrant that the Parkinson warriors have made it a second home,” he said. “Many of them would rather spend their time hanging around and chit chatting than staying at home.”

“The Parkinson warriors want to fight against the illness so it does not overcome us.”

But he found that, beyond the activities, there was no other interaction with fellow patients. So he started the Parkinson Befrienders Support Group (PBSG) with 12 others he met at PSS.

The initial group of 12 would meet weekly to update one another on their conditions and encourage one another.

From weekly catchups, they started holding birthday lunches and outings. Next came monthly meetings to support newcomers, providing a space to share challenges and useful information.

They called themselves “Parkinson warriors”. “We want to fight against the illness so it does not overcome us,” Teck Koon explained.  

“Life is precious. It doesn’t need to be perfect for one to find meaning and be impactful,” he said

Teck Koon focused early efforts of Parkinson Befrienders on building relationships through birthday celebrations and lunch outings.

When Covid hit, the group gathered on Zoom. When small group meetings were allowed, they went for walks in groups of five at Bishan Park every Friday morning. This group has grown to 40 people.

On Fridays at 8.30am, the walking group meets at Bishan Park and starts by taking a group photo.

Teck Koon’s key motivation was to coax Parkinson’s patients out of social isolation into social integration.

Then they sing Billy Morrissey’s “Old Friends Are Best”. Yen Ching captures this on video, then it is sent to the Parkinson warriors Whatsapp group chat.

“The lyrics are a powerful reminder that the warriors are not traveling this journey alone,” she explained. “The song is the same, but the people vary each time so we record it every week.”

“PBSG is a safe place where Parkinson warriors feel at home with one another,” Teck Koon said. “We can let our hair down. There’s no need to hide our symptoms.

“I fell twice in the presence of everyone and I didn’t feel embarrassed because this is our community.”

Teck Koon’s key motivation for starting the group was to coax Parkinson’s patients out of social isolation into social integration. The impact of combating the disease is so much greater when they come together, he said.

During the Covid pandemic, the Parkinson Befrienders visited other Parkinson warriors in place of big group meetings. “We have to stay connected with one another,” Teck Koon said.

A man was brought to PBSG last year by his daughter and son. He was depressed and discouraged after trying to exercise on his own. He found support in this group.

“When one has faith, faith overcomes the fear of uncertainty.”

Another woman, who had been bound to her wheelchair, came to PBSG and was motivated to get up to walk with the help of her caregiver. 

“No one can fully understand what we’re going through, not even our caregivers,” Teck Koon explained. “So whenever we come together, whether to attend classes at the Parkinson Society or just for a walk or a meal, we feel so happy to be with people like us.”

The group is so close-knit, not only have they compiled testimonies, they even have their own T-shirt: a bright green shirt that reads “Beating the Odds”, designed by two Parkinson warriors. 

Sharing the love of Christ

When Teck Koon founded the group, he felt it was a calling from God to bring encouragement to people. It is not a ministry but he and Yen Ching simply love the members with the love of Christ.

The group is secular and welcomes all Parkinson’s patients. But it is no secret there are Christians among them. 

Many pre-believers in the group now ask for prayer because they realise there is genuine care and concern.

Some would ask the Christians in the group: “How can you all be so positive?” Yen Ching said. 

“I believe the community can see a difference in how the Christians approach adversity,” Teck Koon said. “We tell them that when one has faith, faith overcomes the fear of uncertainty.”

One pre-believer PBSG member, after observing the Christians in the group, made his way to a church near his home. The believers in the group took the opportunity to talk to him about Christianity.

Once, the group was playing a game of “pass the apple”, where the one left holding the apple has to answer a question. To the question, “If you were granted one wish, what would you want to be?”, one woman responded: “I would like to be a Christian.”

Teck Koon and Yen Ching bought her a Bible, a Christian calendar and a copy of the devotional Our Daily Bread. The lady will get baptised this month.

Every Friday morning, the Parkinson warriors gather to take a group photo and sing “Old Friends Are Best” before they set off on a walk.

Praying for one another is a common occurrence in PBSG. Many pre-believers in the group now ask for prayer because they have come to realise that there is genuine care and concern from the Christians.

The group has 80 members officially, but the community extends to 40 more people through their WhatsApp chat, named “Parkinson Warriors on the Move”. 

The chat serves as a platform to share information and also to check in on each other, with members extending help and support wherever needed.

Not afraid to ask for help

In his journey dealing with Parkinson’s, Teck Koon surprised himself by thanking God for the affliction.

“Because of this, I have become a different person; I see things differently,” he said to Salt&Light, his voice breaking.

For him, Romans 8:28 is the hope on which he stands: “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

Where he used to try to hide his condition in order not to burden others, he is now open about it.

Parkinson’s has made him prone to falling backwards, so some of his friends stand behind him during table tennis games. His friend Andrew Sng commits one morning a week to drive him to his activities.

“No one should walk alone.” Teck Koon takes frequent walks with his fellow Parkinson warriors.

“It gives the other party a chance to help someone,” he explained. “And when others see believers do good, they give glory to our Heavenly Father.”

On Sundays, when Yen Ching teaches at Sunday school, his friends Tan Hin Oon and Poon Kum Hoong, both in their 60s, take turns to accompany Teck Koon from the church sanctuary to the Bible study classroom in case he needs support.

“Only when you are humble enough to accept your weaknesses will you be strong enough to bring God into the picture,” he said.

“Very often, we think we are self-sufficient. But when we understand we are inadequate, we realise we need to rely on God.”

Choosing to trust in God

Teck Koon recently found out that his condition is worse than originally diagnosed. 

He has progressive supranuclear palsy (PSP), a rare neurological condition like Parkinson’s, sometimes called Parkinson’s Plus. Symptoms of PSP are similar to Parkinson’s, but the degeneration is more rapid. 

“Will I end up like Job who said, ‘The Lord gives and the Lord takes away. Great is my redeemer!’?”

“When I realised it was more serious than the normal Parkinson’s, I asked God why I had to get the worst of the worst,” Teck Koon admitted. 

However, knowing others would watch to see his reaction to the situation, Teck Koon pulled himself together.

“Will I end up like Job‘s wife who urged him to ‘curse God and die’?” he pondered. “Or will I end up like Job who said, ‘The Lord gives and the Lord takes away. Great is my redeemer!’?”

What gives him strength is the promise that God would not let His people be tested beyond what they are able to endure (1 Corinthians 10:13).

“I have read enough to know of the depressing things about PSP,” he said. “Instead I choose to trust in my God who is able to do exceedingly, abundantly above all we ask or think (Ephesians 3:20).” 

He said: “I hope that at the end of my journey, my Lord Jesus Christ will welcome me with an open arms, saying: ‘Well done, good and faithful servant, enter into thy rest’.”


RELATED STORIES: 

“How do I live a life that glorifies God through my suffering?”: A medical doctor on living with chronic illness

Ain’t no mountain high enough: Senior with Parkinson’s heads hiking ministry to keep the elderly active

“Everything I used to do, I will do until I cannot anymore”: Parkinson’s didn’t stop him from hiking 270km from France to Spain

 

About the author

Peck Sim

Peck Sim is a former journalist, event producer and product manager who thankfully found the answer for her wonderings and a home for her wanderings. She now writes for Salt&Light and also handles communications for LoveSingapore.

×