Maintaining an even keel on Parkinson’s

World Parkinson's Day was observed earlier this month on April 11.

Parkinson's disease is a condition of the nervous system which causes the muscles to become stiff and the body to shake.

It gradually worsens over time. 

It's one thing to have such a condition strike your family once – but twice?

Last week, I spoke to Leong Chung Thad who knows well what such an experience is like.

The 65-year-old who hails from Damansara Utama in Petaling Jaya was more than willing to tell his story so that I can share it with others.  

"My mother was diagnosed with Parkinson's when she was 47," recalled Leong.

"Back then when I was in my early 20s, little was known or heard about Parkinson's even though my mum's diagnosis was made about two years after her symptoms began," he said.

Leong went on to point out that in the 1970s, it was incredibly frustrating to find out more about what Parkinson's was all about.

All the traipsing in and out of doctors' clinics, hospitals, bookshops and even libraries were of little use.  

"Other than its fancy sounding name, we really knew very little about Parkinson's. Most of the time, we ended up getting the wrong information placing the disease with a stroke or fits – which was far from the truth," said Leong.

Finally, they had to rely on some simple common sense to try and help mum.

For the first 10 years at least, Leong's mum managed rather well. She was mostly independent, looked after herself and did all the housework on her own.

Keeping herself busy helped her fight boredom and negative thoughts about Parkinson's, as well as depression at bay.

"Mum was a fighter to the very end. She always kept her spirits up. Her toughest battle was to dismiss her nightmarish dreams at night and hallucinations during the day," Leong explained.

"Although I tried to point out to her that her visions weren't real, they still bothered her intensely.

"She loved to sing and dance – something she practised often to stay healthy and mentally alert. Although we knew that Parkinson's was slowly taking its toll on her, she tried her best not to show it – especially to us.

"Her involuntary movements got more pronounced, leg cramps more frequent and her sense of balance and strength began to wane.

"In her later years, she had to give up cooking, one of her great joys in life. We wished we knew how to help her better, but had no access to relevant information then which would have been useful.

"It was heart-breaking for all of us in the end when she passed away at the age of 67 from head injuries. She had a fall in the bathroom and never regained consciousness."

However, less than a decade after Leong's mother's passing, the ugly face of Parkinson's came back to haunt the family.

This time it was the neurologist's turn to confirm that Leong had the disease. This was 15 years ago. 

"My specialist was quick to point out, however, that my condition was not hereditary. Like my mum, Parkinson's started to slowly but surely affect me, too."

It affected Leong's performance in his table tennis championships where he played for his company. Leong embarrassingly kept missing the ping-pong balls. 

At family dinners, as is customary, he used to be the first at the table to pay the bills. However, as is common with persons with Parkinson's, he has trouble getting his wallet out fast enough – so much so that his friends made fun of him as being "stingy" with his money.

Leong's body movements became robotic and stiff and he even lost his sense of smell. His friends complained of him of being poker-faced during gatherings. However, because of Parkinson's, putting on a smile on his face took great effort.

There were noticeable differences in his speech, too. It became slow, soft and slurred.

All these threw him into bouts of depression.

However, it was ultimately his wife and his family who not only helped, but continues to inspire him in his battle against Parkinson's.

"More than anyone, my wife is the pillar of my strength, my best friend and critique in her critical role in keeping me on an even keel of the disease.

"I am able to share with her my innermost feelings and frustrations 24/7. She acts like a mirror for me by helping me see my battle with Parkinson's in a proper perspective.

"During moments of weakness, she helps me see where I went wrong, and what I need to do in order to get back on the right track again."

For those experiencing the same struggle as Leong, he has these following quick words to share:

• Always keep your spirits up. Wake up every morning with a spring and a song in your heart. There is nothing out there that is going to bring you down.
• Exercise to your maximum. Consult your medical experts, i.e. neurologists, physiotherapists, and others regularly. Never miss an appointment.
• Try out alternative therapies like yoga, qi gong, positive thinking and others in order to get the most out of your efforts and in improving your quality of life.

For information on Parkinson's, contact the Malaysian Parkinson's Disease Association at 03-7980 6685. – April 20, 2015.

* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.