Rare Parkinson's Heroes Who Changed the World
Mr. Lloyd Tan is the icon and hero of the Parkinson's community. His spirit lives in us forever. Let us feel his energy as he guides us to live with Parkinson's, reaches out to us to give hope and inspiration.

“I will bring you to the best char-kueteow stall in town when I walk out from here,” the young doctor promised as I examined him during one of my morning ward rounds, back in 1995.

There was a faint smile on his face as he lay still on the bed, with his hands trembling. Even though he was still in his late thirties, he looked more like a middle-aged man due to his long and unkempt beard. His voice was weak and indistinct; those who were not familiar with him would struggle to understand him. Somehow, I managed to make out what he said by reading the movement of his lips; something that I had learned after taking care of him for quite some time. As I left his room to proceed to other patients’ beds, he tried waving his right hand at me. But all I could see was a mild twitch of his right forearm and finger as the nurses helped to put his frail body to rest.

That was one of the mornings with the 38-year-old doctor who had been admitted to my medical ward for four months. He had young-onset Parkinson’s Disease or YOPD (symptoms starting before the age of 40), having had the illness since the age of 33. Even though he had been having PD for five years, he could not accept his illness, probably because he was still young. Out of frustration, he frequently stopped taking his medications. The poor compliance with medications, and the progression of illness had contributed to the rapid deterioration of symptoms.

He was completely bedridden for several months before the present admission. Due to the advanced disease and various other complications, the family doctor had decided that it was best to leave the management to the specialists in the hospital. In addition, he needed treatment for the bedsores that occurred as a result of long term immobilization.

I had never known him before this admission. I had heard a lot about him from my ward staff, especially about those days when his PD was mild and he was still working. He was actually the former director of the very same hospital where he was warded. The hospital staff who had previously worked with him remembered him as a young, energetic and enthusiastic doctor who was always prepared to serve his patients. His humble nature was well-liked by everyone. He made it a point to have a cup of afternoon coffee with the ambulance drivers and attendants everyday; a “taboo” among doctors (the typical hierarchy system in a hospital usually puts the status of a doctor very high above that of an ambulance driver, to the extent that they are not encouraged to interact). It was during the afternoon coffee breaks that many people noticed his hands were trembling while holding the cup.

After working for several years, his physical disability deteriorated and he was forced to resign from his job. He stayed at home all the time, completely isolating himself from the outside world. He only allowed one close friend to visit him at his home, and no one else. Probably he still could not accept his illness at that stage. Adding to the frustration was his financial problem. As he came from a low-income family, he had intended to work hard to provide a more comfortable life for his family, especially his mother and sister. He must have felt guilty for not being able to do that.

Throughout his four months stay at my ward, I had gradually found a good friend in him. Somehow, doctors could communicate quite well with each other. I could even confide in him whenever there were any problems that bothered me. I liked his good sense of humour; he could even crack jokes even though his body was so weak and motionless. I also realized that he was highly intelligent and had a good command of English. Each time we had a conversation, he could easily quote an English proverb and embarrassed me (as I know only simple English words).

His mind was crystal clear all the time; no hallucination or confusion of any sort. The only mental problem that he had was the fluctuation of moods. At times, he was obviously depressed, probably because of his illness and his wife. I discovered that he had been separated from his wife, who took along their two lovely children with her. At other occasions, he was very happy especially when his nieces visited him. I learned from his sister that he had always been very close to his nieces, who bored a strong resemblance to his own children. It must have been extremely painful to be missing his lovely children when he was so sick and so far away from them.

His wife had never visited him at the ward throughout his stay. I tried to find out where she was but no one had any idea about her whereabouts. Until today, I have not had the chance to meet his wife. I have always wondered how she felt about everything that happened to her husband, especially about the final outcome of his illness.

Despite the intensive treatment and physiotherapy, the young doctor’s physical condition did not improve. Day by day, he became more and more depressed. He had lost hope in life and was just waiting to die. Somehow I knew that I would eventually lose him. He became withdrawn and did not want to speak anymore. What was no longer present was the smile that he usually had on his face during my morning ward rounds. What I saw was a man who was just waiting for his time to leave this world.

One morning, five months after admission, his condition suddenly deteriorated and he passed away due to lung infection.

Until today, I have always remembered this young doctor because of several reasons. Firstly, he was my first Parkinson’s patient who belonged to the medical profession. In fact, it is uncommon to meet doctors who suffer from PD. I guess this is because most doctors who have this illness tend to keep it to themselves for fear that revealing their PD to others may jeopardize their career. As PD is known to spare no one, I am sure that there are as many doctors who suffer from PD as the teachers, lawyers, etc. As I met more and more Parkinson’s patients over the years, I came to know quite a number other doctors who suffered from PD, and a few of them were in the YOPD category.

Secondly, he was the first Parkinson’s patient who taught me about the realistic side of PD. Having graduated from medical school only a few years before meeting this young doctor, I had very limited experience in PD. Prior to this enlightening encounter, all I knew abut PD was merely bits and pieces about its theoretical aspects such as symptoms and treatment.

The young doctor showed me the painful part of this progressive and incurable illness, as it “ate into his flesh”. He made me realized that PD was one of the most devastating medical disorders. Unlike other frequently fatal illnesses such as cancers and heart attacks, PD itself does not directly kill patients. In fact, the very fact that PD does not kill makes it a very painful illness as it leads to life-long physical and mental sufferings.

Thirdly, he was the first young Parkinson’s patient whom I had treated. Being a young and na├»ve doctor then, I had always had the impression PD affected only the elderly people. Subsequently, I came to know that 5% of Parkinson’s patients belong to the YOPD category.

PD also affects the young, and does not spare any ethnic group

About 5% of Parkinson’s patients are known as “young-onset PD” – their symptoms started before the age of 40 years. Left; Ms. Khoo Siew Lay, ethnic Chinese, 49, PD since age 38. Centre; Mdm. Zanariah Ali, ethnic Malay, 32, PD since age 26. Right; Mr. Pandirajan, ethnic Indian, 42, PD since age 32

The very fact that these Parkinson’s patients started having the illness since a young age makes them the “priority” patients, as they have many more years of suffering than other Parkinson’s patients. Moreover, the YOPD patients are still in the “prime time” of their lives, being married with young children and economically productive.

It is important for us to provide the best possible medical care for all the Parkinson’s patients, young and old. But we can’t deny the fact that it is the YOPD patients who need the most help and attention. The young Parkinson’s patients are the ones who need the brain surgery (DBS) the most.

The take home message is that these young Parkinson’s patients do not need to suffer as much as the unfortunate young doctor.