Led by Cheong (in black), participants find the sessions a great way to meet others on a similar journey. - Photos RAJA FAISAL HISHAN/The Star
On a recent Tuesday morning, several men and women gathered together at a corner lot in Taman Nyaman, Old Klang Road, Kuala Lumpur for a dance workout. The Malaysian Parkinson’s Disease Association (MPDA) was hosting its first hybrid “Dance For Parkinson’s” programme since the pandemic, combining a group which was there in person, as well as those who had dialled in from afar.
Led by dancer/ballet teacher Katy Cheong, about 20 participants, those with Parkinson’s disease and their caregivers, happily engaged in a series of dance patterns and exercises set to pop classics from the 1970s which got everyone moving, laughing and having a good time.
“Before the pandemic in 2020, we used to have weekly sessions here at the MPDA centre in Old Klang Road, and then suddenly we had to switch to Zoom during the MCO,” Cheong shared.
“I had already been teaching my ballet students online, so it wasn’t difficult for me to make the switch and conduct these sessions online also. They went on really well for about two years. We had about 35 participants calling in from as far as Penang, Sabah and Sarawak.”
Cheong started the sessions because she wanted to do something to help the patients. — RAJA FAISAL HISHAN/The StarCheong first “stumbled” upon the MPDA when she was doing research on continuing professional development (CPD) courses.
She said: “My late mother was a stroke patient, and I wanted to be able to contribute to society, with the initial intention of helping other stroke patients. But when I ran into the MPDA, my focus switched to Parkinson’s instead,” she said.
“And working with Parkinson’s patients has become something very dear to me.”
Cheong, 62, has been teaching ballet for over four decades now, and currently teaches at her school, the Dance Art Ballet Academy in Taman Melawati, Selangor. She has been sharing her love for dance with the MPDA since attending the “Dance for PD Introductory & Enrichment Workshop” in 2016, jointly organised by the MPDA and the Federal Academy of Ballet, licensed by the Mark Morris Dance Group. After the workshop, Cheong offered to teach dancing voluntarily for the MPDA members.
“What I try to do during our sessions is to provide a conducive environment for all our participants to relax and have some fun.
I facilitate and provide some movements which they can follow but ultimately, it is ‘their hour’ and if they feel like moving in any other way, it’s fine. I get very excited when I observe how those with Parkinson’s move to the music when they are immersed in the activity.”
Cheong said that the MPDA is like family to her: “My Parkinson’s family. I feel so inspired by them, how they try hard and are so enthusiastic. My other friends know not to bother me during my Parkinson’s days. I have worked with the MPDA for years now and I can gauge what sort of music gets them excited,” she said.
At the Rhythm Beats Parkinson's Drum Circle event held in January this year. - Malaysian Parkinson’s Disease Association
“One of the joys for me is selecting songs for our playlist. We usually have a theme. One time, during a hot, dry spell, we did a ‘rain theme’ and before we ended the session, the sky grew dark and it rained!”
Dancing with people with Parkinson’s has left an indelible impression on Cheong. She remembers that one of the ladies, Madam Leong, once gave her a quilt that she had hand-sewn herself.
“She told me that she would work well into the early hours of the morning on days when her hands were not shaking so much. I felt touched. I really treasure that precious gift and use it every night.”
Social network
Azmi Bibon, 62, was first diagnosed with Parkinson’s in 2018. The former banker from Shah Alam, noticed an incessant tremor in one of his fingers and immediately went for a checkup. After going through a series of tests including an MRI, CT scan and endoscopy, he was finally referred to a neurologist who diagnosed him with early stage Parkinson’s disease, a degenerative brain condition, which causes parts of the brain to deteriorate.
Azmi had a blast at the recent dance session at the MPDA. “It felt so refreshing,” he said. “You are able to build up your confidence while enjoying yourself.”
Azmi was present with his wife who doubles up as his full-time caregiver/chauffeur, Siti Rahimah.
“She won’t let me drive anymore, and insists on taking me wherever I need to go!”
Azmi goes on a 4km walk daily, believing that it is important to keep moving.Both husband and wife danced together during the dance session with Cheong, and Siti Rahimah also made it a point to chat with other members.
Azmi said that because he has weak motor skills, he does physio and has learnt some exercises from a Universiti Kebangsaan Malaysia physiotherapy postgraduate student which he does diligently.
Both Azmi and Siti Rahimah also go for a 4km morning walk everyday.
“It’s important to keep moving,” he said, adding that the MPDA provides fantastic support for him and is a great way to meet others with Parkinson’s. “I like all their activities.”
Karen Yap, 65, has Parkinson-plus syndrome and is wheelchair-bound. Accompanied by her husband Wong YW and a full-time caregiver, Yap was present at the dance session and joyfully attempted all the moves with everyone else.
“I enjoyed the session,” said the retired secretary from Taman SEA, Petaling Jaya. Her husband Wong shared that Yap is prone to falling and has to be very careful, yet Yap appeared glad to have a chance to get out and spend time with others.
David Lam, 78, enjoys keeping active and said the MPDA gives him the opportunity to interact with others and also engage in various activities. “I used to do ballroom dancing in my younger days, and I was also into sports and swimming. It is important that I keep moving so that I can retain my freedom and independence.”
While enthusiastic about dancing, Helen Tang, 73, was also a little fearful. “I have had Parkinson’s for 28 years now. And though I enjoy myself when I am doing these activities, I am also afraid of falling. It has become very difficult for me to do simple things,” said the housewife.
Bobby Tan, 74, attends all the MPDA activities with his wife Melinda Chiew, 72, who has had Parkinson’s for close to 14 years now.
While his wife participates in the activity for the day, Tan busies himself with odd jobs and errands that need attending to.
He said: “I help out wherever I can. Sara Lew, MPDA’s president, has been tirelessly championing this cause on her own for a long time now. She is incredible. Whatever I can do to help, I must.”
The MPDA joined in the 28th Annual Charity Walk/Jog/Wheel-A-Thon held at the Dataran Merdeka. - Malaysian Parkinson’s Disease Association
The glue that holds everything together
The MPDA was formed in Kuala Lumpur by a group of people with Parkinson’s and their caregivers 30 years ago, in 1994. It is the longest standing Parkinson’s support group in Malaysia, and its current membership stands at about 300.
“Our main aim is to help people with Parkinson’s, their caregivers and family members to improve their quality of life through education and support. We’re not funded by the government, so we rely on contributions and collaborations with individuals, like Katy, who so selflessly volunteer their time and skills, as well as support from universities, hospitals and private organisations,” Lew says.
Lew joined the MPDA as a member in 1995, to accompany her late father who had Parkinson’s.Lew shared that she joined the MPDA as a member in 1995, to accompany her late father who had Parkinson’s. After his death in 2011, she has continued to make it her life’s work to create avenues and opportunities for people with Parkinson’s to learn more about the disorder and to improve their quality of life.
Past activities have included tai chi, speech therapy, games, singing and drum circles, Lew shared. “We use a multi-disciplinary approach to rehab, and we try to make things enjoyable for everyone,” said Lew, who spent the whole morning cooking up a delicious lunch for the group that had turned up for the dance session.
“One of the reasons I have started including a lunch post activity is because it gives everyone a chance to mingle and share their personal stories with one another. It’s just so heartwarming to see them all talking and interacting with each other.”
If you’d like to know more about the MPDA or Parkinson’s disease, go to https://mpda.org.my/ or find them on Facebook at https://www.facebook.com/mpdakl
