Deep brain stimulation surgery helps reduce the symptoms. |
World Parkinson's Day is on April 11 each year. KASMIAH MUSTAPHA discovers that sufferers have to cope with far more than their physical symptoms here in Malaysia.
| Michael J. Fox was diagnosed with Parkinson’s disease when he was 30 years old. He has been living with the illness for almost 18 years. |
For the past 14 years, Niamat Ali Raunkee has not only had to endure uncontrollable tremors and stiffness of his muscles, but also the comments passed by those who do not understand his condition.
The 68-year-old is in the advanced stages of Parkinson's disease. And when the physical symptoms occur in public, instead of helping, people simply stare at him.
“I was at a post office once and was sitting down waiting for my number to be called. When it was my turn, I could not get up because my muscles had become so stiff. I was struggling to move and even asked the person next to me for help but I was ignored.”
A former teacher and an outgoing person, he rarely goes out now unless he's accompanied by his wife, son or daughter. As the symptoms — such as the tremors — can happen at any moment, he gets embarrassed when people stare and sometimes, even laugh, at him.
“They make me feel even worse. The trembling and stiffness conditions I cannot control. I do hope people become aware of the conditions of Parkinson’s disease.”
Even talking seems such an effort — his voice can barely be heard. His wife and son intervened occasionally to explain his condition.
Niamat is now taking three different medications seven times a day. During his “on” period, which means when he has taken his medication, he can walk and move, although movements are slow and he still needs help walking.
During his “off” moments, when the medication begins to wear off, his body becomes stiff and weak. He needs help to walk, sit or even raise his hands.
At night, he needs his wife's help to turn him on his side, as he says he becomes stiff as a statue.
Parkinson’s disease is a chronic neurological condition. It was named after Dr James Parkinson, who first identified the symptoms in 1817 and called it “the shaking palsy.”
The illness affects the way the brain co-ordinates body movements including walking, talking, and writing. The most common and visible symptom includes the tremors that usually begin in one hand. These are the first symptoms for 70 per cent of people with Parkinson's disease.
Other symptoms include slowness of movement or bradykinesia as the patient will have difficulty initiating movement or take a long time to perform simple tasks due to the stiffness or rigidity of the muscles.
It is believed that low levels of dopamine, a brain chemical which is involved in controlling movement, causes the symptoms of Parkinson's disease. The shortage of this brain chemical occurs when nerve cells in a part of the brain that produces dopamine fail and deteriorate. The exact cause of this deterioration is not known.
Studies are ongoing to find if there is a link between Parkinson’s disease and other factors such as genetics, ageing, toxins in the environment and free radicals.
Pantai Cheras Medical Centre consultant neurologist Dr Chew Nee Kong said often the Parkinson’s disease sufferer has to deal with social stigma because the awareness of the illness in Malaysia is still very low.
He believed that 99 per cent of Malaysians have no idea what Parkinson’s disease is and even the one per cent who do, are not well-acquainted with the facts.
“When people see someone shaking vigorously, they stare and probably think that person is crazy. Most of the sufferers don’t go out because of this. It is emotionally distressing for the patients. People always associate this illness with old people and because of this, they ignore it.”
Debunking the myth, Dr Chew said the youngest patient who was diagnosed with the illness is only 23. Between five and 10 per cent of the patients had the symptoms before they turned 40. They are known to have the Young Onset Parkinson’s disease.
Another reason for the lack of awareness is due to the fact that Parkinson’s disease is not a terminal illness, said Dr Chew. The patients die from other conditions such as heart attack, diabetes and stroke. A small percentage would be bedridden and may die from lung infections.
He said with early diagnosis and good treatment, most patients can have a fairly good quality of life. They can control their symptoms and be able to work, drive and even travel abroad.
At times, people would be confused by the symptoms of the disease with the ageing process and that is why most of the sufferers do not seek early treatment. Most are diagnosed only two years after the onset of the symptoms.
“Early detection with medication can improve the quality of life and reduce their suffering. Their condition will worsen each year despite the medication. There will be a stage, maybe after 10 to 15 years of the illness, when that the patient might no longer respond to the medication.”
At this time, patients are recommended for the deep brain stimulation (DBS) surgery.
The surgery involves placing very small electrodes in parts of the brain and attaching them to a device placed underneath the collarbone. DBS can reduce the involuntary movements called dyskinesias and help to alleviate fluctuations of symptoms and reduce tremors, slowness of movements and gait problems.
The surgery is often done on patients who have been living with the disease for more than 10 years. For the Young Onset Parkinson’s, surgery is only recommended after seven to 10 years of diagnosis. The risks of the surgery include stroke and since most patients are still in the prime, they're usually treated with only medication.
Dr Chew said that surgery does not cure Parkinson's disease but only helps reduce the symptoms. With the brain surgery, between 50 and 90 per cent of the symptoms will improve. The patients would be free of the symptoms for up to 10 years.
“To date, 25 patients have had brain surgery in Malaysia. One of the main reasons why many patients do not opt for the procedure is the cost — RM80,000, excluding other hospital charges. And within three to five years, they need to change the battery and that will cost RM60,000.
“Unfortunately, even in government hospitals, the cost is still high. We are hoping that the government helps sponsor the surgery.”
It is estimated that there are about 15,000 to 20,000 Malaysians living with Parkinson's disease.
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