Being struck with Parkinson’s disease is no reason for anyone to give up.
However, for those who have the incurable condition and have to struggle on with its daily effects in their bodies – the important thing to do is to keep fighting back.
Parkinson’s is a disease of the nervous system. It generally causes the muscles to become stiff and the body to tremble which gradually gets worse, as a person gets older.
The good news is about the condition is that Parkinson’s is treatable.
One of the local NGOs which has been at the forefront in battling with this debilitating disease is the Malaysian Parkinson’s Disease Association, or MPDA, in Kuala Lumpur.
This year it turns 20-years-old. And to commemorate its two decade year old history, the MPDA has lined up a host of activities for its nationwide members.
Last month, the MPDA celebrated World Parkinson’s Day. The event falls on April 11 each year, which marks the birthday of Dr James Parkinson.
Parkinson was amongst other things, an English surgeon who became most famous for his work called, “An Essay on the Shaking Palsy” in the 19th century. He was the first to describe “paralysis agitans”, a condition that was later renamed as “Parkinson’s disease” by Jean-Martin Charcot.
World Parkinson’s Day today the world over is dedicated to improving the quality of life of People with Parkinson’s (PwP) through advocacy and raising awareness about the disease.
During World Parkinson’s Day, MPDA had a very special guest from the United States at their centre.
He was Dr Marcus Cranston who was struck with Parkinson’s at the age of 44.
Instead of allowing the sinister disease to get the better of him, Dr Cranston, an American physician and Air Force Colonel now aged 48, succeeded to turn the situation around to his advantage.
He has made it a personal challenge to increase worldwide awareness of Parkinson’s by making a journey through 44 countries in 4 weeks and 4 days, as well as running 4 miles in all of the country he visits.
Needless to say, his initiative took place on the fourth of April this year.
Dr Cranston’s “Run-the-World for Parkinson’s disease” campaign combines travel and sport to raise funds for research through Michael J Fox Foundation and Team Fox.
(Incidentally Michael J Fox was diagnosed with Parkinson’s in 1991 and is one of the most well-known and outspoken activists for PwP’s today).
Malaysia was the eighth country that Dr Cranston had visited to date.
Sharing the stories
During his visit to MPDA’s Parkinson’s centre, Dr Cranston spent an hour getting to know members of the MPDA which included caregivers to PwP’s.
As he shared his personal experiences with Parkinson’s, he was intrigued to hear some of the stories that Malaysians with the disease also had to tell him.
After his visit, members of the MPDA and volunteers travelled to the Bukit Jalil Recreation Park where they joined Dr Cranston to complete his four-mile run in Malaysia.
The group was joined by about 30 undergraduates from the International Medical University (IMU).
“The event on World Parkinson’s Day not only increased awareness about Parkinson’s in those who participated but it also gave hope for those who have to struggle with their condition every day,” said Sara Lew, president of the MPDA.
“PwPs not only find strength in meeting and sharing success stories with others in the same condition but they also look forward in learning about new research and treatments that are available for Parkinson’s disease patients,” she added.
Sara whose father had Parkinson’s disease for 21 years until he passed away three years ago went on to point out that being struck with Parkinson’s is no reason for anyone to give up.
“What is most important is that for all of us to know that there definitely is life after Parkinson’s disease and we must always persevere on and not be limited by anything because of Parkinson’s.”
A World Parkinson’s Congress was held in Montreal in Canada last year. It was a third of its kind of international event focusing on Parkinson’s disease.
It was a coming together of an impressive team of doctors, patients, caregivers and supporters in which more than 3,330 delegates from 64 countries around the globe tackled issues related to Parkinson’s – from a professional point of view to what people with Parkinson’s face in their own societies in their countries.
“MPDA has come a long way in this respect,” pointed out Sara.
“Over the years we have never been afraid or shy to tell the stories of Malaysians with Parkinson’s, what they have to do if they have the disease to what kind of support our healthcare offers them.
“We have also reached out to caregivers who are the key in helping PwP’s lead as much a normal life as possible. Through our interaction and sharing with one another, we have grown in strength and look forward to face the many challenges to come in the future,” concluded Sara.
Malaysian Parkinson’s Disease Association is located at No 35, Jalan Nyaman 10, Happy Garden, Jalan Kelang Lama, 58200 Kuala Lumpur. They may be contacted at Tel: 603-7980 6685 or Fax: 603- 7982 6685.
You may also visit their website: www.mpda.org.my
Or say “hello” to them on Facebook: https://www.facebook.com/pages/Malaysian-Parkinsons-Disease-Association/207738475948217
Anthony SB Thanasayan is a wheelchair and animal activist. He is also a former city councillor.