Being struck with Parkinsonâ€™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 â€“ the important thing to do is to keep fighting back.
Parkinsonâ€™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 Parkinsonâ€™sÂ isÂ treatable.
One of the local NGOs which has been at the forefront in battling with this debilitating disease is the Malaysian Parkinsonâ€™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 Parkinsonâ€™s Day. The event falls onÂ April 11Â each year, which marks the birthday of Dr James Parkinson.
ParkinsonÂ was amongstÂ other things, an English surgeon who became most famous for his work called, â€śAn Essay on the Shaking Palsyâ€ť in the 19th century. He was the first to describe “paralysis agitans”, a condition that was later renamed as â€śParkinson’s diseaseâ€ť by Jean-Martin Charcot.
World Parkinsonâ€™s Day today the world over is dedicated to improving the quality of life of People with Parkinsonâ€™s (PwP) through advocacy and raising awareness about the disease.
During World Parkinsonâ€™s Day, MPDA had a very special guest from the United States at theirÂ centre.
He was Dr MarcusÂ Cranston whoÂ was struckÂ with Parkinsonâ€™s at the age of 44.
Instead of allowing the sinister disease to get the better of him,Â 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 Parkinsonâ€™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 Cranstonâ€™s â€śRun-the-World for Parkinsonâ€™s diseaseâ€ť campaign combines travel and sportÂ to raiseÂ funds for research through Michael J Fox Foundation and Team Fox.
(Incidentally MichaelÂ J Fox was diagnosed with Parkinsonâ€™s in 1991 and is one of the most well-known and outspoken activists for PwPâ€™s today).
Malaysia was the eighth country thatÂ Dr CranstonÂ had visited to date.
Sharing the stories
During his visit to MPDAâ€™s Parkinsonâ€™sÂ centre,Â Dr CranstonÂ spent an hour getting to know members of the MPDA which included caregivers to PwPâ€™s.
As he shared his personal experiences with Parkinsonâ€™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 joinedÂ Dr CranstonÂ to complete his four-mile run in Malaysia.
The group was joined by about 30 undergraduates from the International Medical University (IMU).
â€śThe event on World Parkinsonâ€™s Day not only increased awareness about Parkinsonâ€™s in those whoÂ participated butÂ it also gave hope for those who have to struggle with their condition every day,â€ť said Sara Lew, president of the MPDA.
â€śPwPsÂ not only find strength in meeting and sharing success stories with others in the sameÂ condition butÂ they also look forward in learning about new research and treatments that are available for Parkinsonâ€™s disease patients,â€ť she added.
Sara whoseÂ father had Parkinsonâ€™s disease for 21 years until he passed away three years ago went on to point out that being struck with Parkinsonâ€™s is no reason for anyone to give up.
â€śWhat is most important is that for all of us to know that there definitely is life after Parkinsonâ€™s disease and we must always persevere on and not be limited by anything because of Parkinsonâ€™s.â€ť
A World Parkinsonâ€™s Congress was held in Montreal in Canada last year. It was a third of its kind of international event focusing on Parkinsonâ€™s disease.
It was a coming together of an impressive team of doctors, patients, caregivers and supportersÂ in which more than 3,330 delegates from 64 countries around the globe tackled issues related to Parkinsonâ€™s â€“ from a professional point of view to what people with Parkinsonâ€™s face in their own societies in their countries.
â€śMPDA has come a long way in this respect,â€ť pointed out Sara.
â€śOver the years we have never been afraid or shy to tell the stories of Malaysians with Parkinsonâ€™s, what they have to do if they have the disease to what kind of support our healthcare offers them.
â€śWe have also reached out to caregivers who are the key in helping PwPâ€™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,â€ť concluded Sara.
Malaysian Parkinson’s Disease AssociationÂ is located at No 35, Jalan Nyaman 10, Happy Garden, Jalan Kelang Lama, 58200 Kuala Lumpur. They may be contacted at Tel:Â 603-7980 6685Â or Fax:Â 603- 7982 6685.
You may also visit their website:Â www.mpda.org.my
Or say â€śhelloâ€ť to them on Facebook:Â 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.