Being diagnosed with Parkinson’s disease is no less being given the “death sentence” as patients of this incurable disease find themselves becoming “invisible” to the world. The society’s refusal to understand the anguish and frustrations of people with Parkinson’s disease makes matters worse. The lack of support and persistent ignorance has only gone to make Parkinson’s disease least understood and hardly talked about, unlike typical illnesses like heart disease, cancer, stroke and HIV/AIDS.
“It is very sad to see that Parkinson’s community in Malaysia faces so much neglect. Because of this neglect and ignorance, of the estimated 15,000 Parkinson’s patients in Malaysia, only 10,000 are actually diagnosed and treated by doctors. The remaining 5,000 are left on their own, suffering in a world of silence and darkness,” said consultant neurologist Dr Chew Nee Kong. to challenges.
Dr Chew specialises in Parkinson’s disease and is the author of the book “Selfless Warrior”, a biographical book on the late Lloyd Tan Pao Chan, who has Parkinsonism-plus syndrome, a condition 10 times more debilitating than Parkinson’s.
Lloyd Tan Pao Chan, in spite of his increasing disability caused by the disease, Tan went on to establish the Malaysian Parkinson’s Disease Association in 1994. Tan passed away in March 2007, after having the disease for 20 years.
“Tan started the association at a time when Malaysians knew nothing about Parkinson’s disease. But he was determined to raise awareness on this disease and despite his incapacitating condition, Tan went on to form this association,” said Dr Chew.
Degenerative brain disease, parkinson’s disease is a degenerative brain disease which results in slowness of movement, tremors (uncontrolled trembling of hands) and body stiffness.
“It is a disease that usually affects the elderly. However, younger people too can be affected, with symptoms in this group of patients starting before the age of 40. As there is no cure for this illness, Parkinson’s disease leads to a progressive deterioration of the physical, mental, social and occupational function,” Dr Chew added.
He said matters have been made worse by the shortage of Parkinson’s specialists. At present, the country only has 50 neurologists and of this, only three or four specialise in Parkinson’s disease.
“For a population of 30 million, we definitely have an acute shortage of Parkinson’s specialists in the country,” Dr Chew lamented.
He said because of this serious gap in the patients-doctor ratio, the lack of specialist care and management has resulted in the wrong diagnosis and improper treatment.
“Tan’s was one such case. He was misdiagnosed as suffering from Parkinson’s when in fact I realised he was suffering from Parkinsonism-plus syndrome, a 10-times more cruelly paralysing disease. What makes it worse is the community and media’s non-commital attitude towards Parkinson’s disease.”
Misconception abounds, Dr Chew said the lack of attention by everyone and the pessimistic approach to treatment of Parkinson’s disease were due to the fact that Parkinson’s is generally perceived as an “old-age” disease.
He explained: “The truth is about five percent of Parkinson’s patients are young people who developed symptoms before the age of 40. They certainly deserve to live life like healthy people, but instead end up having to worry about the future of their families.”
Dr Chew said the late diagnosis of Parkinson’s disease in Malaysia has led to patients enduring unnecessary suffering and their quality of life diminished.
“On an average, patients are diagnosed after a period of 22 months. If they are diagnosed early and with the rapid advances in treatment, Parkinson’s patients can achieve a normal quality of life with many of the patients being able to work, drive and enjoy holidays up to 10-15 years after being diagnosed with this disease,” he pointed out.
Dr Chew said a pessimistic approach in treatment of Parkinsons was partly due to the difference in perception of geriatric medicine.
“In the Western countries, when a 70-year-old woman or man cannot leave their house, it will startle people, making them realise something is wrong. But in Malaysia, when our 60-year-olds are unable to leave their houses, we sadly accept it as “normal”. This should not be the case,” he stated.
Lack of funds for surgery, medication while very effective for the first 10 to 12 years after a patient is first diagnosed with Parkinson’s disease soon becomes ineffective, forcing the patient to undergo the much expensive brain surgery known as the Deep Brain Stimulation (DBS).
Explained Dr Chew: “Brain surgery is a relatively new treatment for the advanced stage of Parkinson’s disease. This surgery is widely available in the United Kingdom, United States, Europe, Thailand and Singapore.
“In Malaysia, brain surgery for Parkinson’s disease was introduced in 2003. Since then, only 20 patients have undergone surgery. The reason for this is because the surgery is very expensive, costing RM80,000 for the first surgery and a subsequent RM60,000 once every three to five years for the replacement of the battery.”
Many patients locally are not able to fork out the money needed.
Dr Chew added, “I had personally submitted names of five patients of Parkinson’s disease, all retired Government servants, to the Healthy Ministry in 2005 requesting financial assistance to help them undergo DBS. To-date there is no news about my application. Each time I called the Health Ministry I was told my application had been transferred from one agency to another. This is very frustrating because while the application is being tossed around, these five Parkinson’s patients suffer immensely. When will the day arrive when our Government hospitals can perform surgery free for Parkinson’s patients, like what is being done in the United Kingdom where each year 200 Parkinson’s patients undergo the much needed surgery at no cost.”
This article was published in the printed issue of Challenges Magazine 2009