Though Pang Boon Kow knows the realities of Parkinson’s disease and that he may one day become bedridden, he is not letting that affect him and he is taking each day as it comes.

BY: Eleanor Yap

In 2008, 67-year-old Pang Boon Kow had a frozen shoulder. He had difficulty putting on a T-shirt and taking it off was also a problem, as he would have to bend his body or get someone to help him remove it. He shared it started on the right side, and he decided to seek help through acupuncture and massage but that did not resolve the problem.

After one-and-a-half years later, the problem moved to his left side while the right side became fine. In 2010, a friend suggested he travel to Indonesia to get a massage, so when he reached there in the morning, he went for a massage and the next day, before coming back to Singapore, he did another one. However, the massage worsened the situation, shared the grandfather of four, and the top of his tendon tore and his soft bone caved in.

When he came back to Singapore, he went to see his GP and later got a referral to Tan Tock Seng Hospital (TTSH), who recommended him to go for surgery. However, thinking it was not so serious to do it right away, Boon Kow postponed it for three months in which time when he did another X-ray. This time, the doctor informed him that the torn had grown, and suggested putting a screw and sewing the tendon back. He took the advice and did the surgery.

 

Still not back to normal

About nine months after the surgery, his wife noticed that his left arm was not swinging normally, and his left leg was dragging and he was walking much slower than before. Though he followed up with the doctor at TTSH every three months and he asked to do exercise, nothing seemed to work. So after nine months of back and forth visits to the hospital, the doctor suggested he do a CT scan and an MRI but he couldn’t find anything wrong. However, he suspected there was something else and referred Boon Kow to the National Neuroscience Institute (NNI) in 2012. During that time, he was not working; he used to sell his mother’s nonya kueh at a coffee shop for six years and earlier, after going to the army, he worked on an oil rig for 13 years doing repair work and piping.

At NNI, the doctor put him on some tests including electrical wires and asked him 20 questions. From the results, the diagnosis became clear that Boon Kow had Parkinson’s disease (PD), a neurodegenerative brain disorder that progresses slowly, in some cases taking 20 years to go through the different stages with the final stage where persons have stiffness in their legs and are unable to walk and require a wheelchair or be bedridden. Persons may experience hallucinations and delusions. A diagnosis of PD is most common after the age of 50 and though it affects both genders, it is more common particularly in men and there is no cure.

When Boon Kow got the diagnosis, he did not know much about PD. “I knew Muhammad Ali and Michael J Fox have it but I didn’t know what it would do to my future.” He was given six months to read up on it and talk to his three children about it. “Though it is not a death sentence, over that period, I found it difficult to accept why it had to happen to me, and that my parents don’t have it.

“My children bought DVDs and books from the US to get me educated about the disease. I then realised I didn’t want the disease to control me but I wanted to control the disease.”

 

Taking it one day at a time

The NNI doctor prescribed Boon Kow several medications including Carbidopa/Levodopa and Selegiline (part of MAO-B inhibitors), and though it has helped, he has suffered some side effects including sexual dysfunction and constipation. Some of his other symptoms may or may not be the result of his medication but more PD itself – “I also wake up very often to pass urine and I can’t sleep well at night as I would have bad dreams of a devil with no head chasing me or I am in some danger. My wife also noticed I have tremours occasionally while sleeping. I don’t have any depression, but my sense of smell and taste have also been affected.”

He also said even before his diagnosis, exercise was part of his routine. However, he had to stop jogging when his doctor said his kneecap was wearing off, and took the doctor’s alternative advice to go swimming instead. He now swims six times a week for an hour and has picked up yoga three years ago and does it twice a week for one-and-a-half hours. He also walks a lot in the park. “People with Parkinson’s should do exercise every single day as it improves their quality of life,” advised Boon Kow.

However, despite all this, he knows the realities of PD and what the future holds for him. “I do worry it will worsen one day. No matter how hard I push myself, I feel the symptoms are coming. My lower lip tremours sometimes and words don’t come out so easily,” said Boon Kow, who is determined to talk about PD in hopes of educating others, help wherever he can and continue to live his life as best as he can.

“I will continue to do the things I am doing till the day I can’t do it. My wife thinks I am normal and can move around. I go deep-sea fishing four or five times a year and stay out three nights in sea. I have also been volunteering for three years at Parkinson Society Singapore (PSS) such as helping to hold patients when they are doing their physiotherapy and encouraging them to do things. I feel happy helping people. However, because of other commitments as well as age catching up, I have slowed down this year.”

He concluded that there is still a strong need to further educate society about the condition. Boon Kow shared an incident when he saw a man waiting for a bus and when the bus arrived, he wanted to stand up but couldn’t as he froze. The bus driver stopped and asked him to come onboard, and when the man extended his hand to ask him stop further, the driver responded by telling him not to come up. “Public awareness is not there. The public needs to be more understanding of those with PD.”

SIDEBOX: PSS & its services Parkinson Society Singapore (PSS) was formed in 1996 by a group of doctors and caregivers to help people living with Parkinson’s. In Singapore, three out of every 1,000 individuals aged 50 and above have Parkinson’s, and this number is expected to go up with a rapidly ageing population. PSS offers a number of activities and programmes at its centre in Bishan including therapeutic programmes focusing on movement, voice, dexterity and cognitive-stimulation. It also provides information and support for caregivers through its caregivers’ workshop conducted once every quarterly, offers training to caregivers of PD patients, and provides access to various support groups organised by hospitals.

 

---