Rare Parkinson's Heroes Who Changed the World
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Caring for Mother

Mdm. Cheng Ah Leek, 60, had been well previously until five years ago, when she had increased frequency in passing urine. It happened particularly at night, when she had to go to the toilet about 5 – 6 times. She had a constant sensation of bladder fullness and the urge to go to the toilet. At times, she could not hold her bladder and wet her pants (urine incontinence).

She also started feeling “heaviness of the head” when she stood up, especially from the sitting or lying position. She had fainted several times when she walked for a short distance.

Three years ago, her body movement had significantly slowed down. Her upper limbs were stiff while her hands were trembling. Her speech was slurred and soft. While lying flat on bed, her blood pressure was 140 / 80 mm Hg. When she stood up, her blood pressure dropped markedly to 60 / 40 mm Hg. The low blood pressure was responsible for her dizziness that she had experienced “” as she stood up, there was pooling of blood at her legs due to gravity, and this led to the reduced amount of blood going to her brain. It was at this time when she consulted a neurologist in Penang, who diagnosed her to have Multiple System Atrophy, MSA (the other name is Shy-Drager syndrome), one of the types of parkinsonism-plus syndrome.

Similar to Parkinson’s, parkinsonism-plus syndromes are caused by a degenerative process in the brain. However, in contrast to Parkinson’s, the degenerative process in parkinsonism-plus syndromes is more widespread and complicated. Thus, patients with parkinsonism-plus syndromes have unusual physical signs that are not usually seen in Parkinson’s, such as abnormal eye movement, autonomic symptoms (low blood pressure, urine incontinence), muscle weakness, postural imbalance and impairment of memory “” giving rise to the term “parkinsonism-plus” syndrome.

Autonomic symptoms do occur in varying degrees in Parkinson’s. But in parkinsonism-plus syndromes (especially MSA), autonomic symptoms are much more prominent and usually start early in the illness.

It is important to recognize parkinsonism-plus syndromes because they are generally not responsive to levodopa or other Parkinson’s medications, and also brain surgery. Furthermore, the physical disability in these disorders advances much faster than in Parkinson’s. Generally speaking, patients with parkinsonism-plus syndromes become permanently wheelchair-ridden within five years after the onset of symptoms. In contrast, Parkinson’s patients usually do not become permanently wheelchair-ridden throughout their entire life (unless when they develop other disorders such as stroke or fracture of the hip).

Mdm. Cheng’s symptoms have deteriorated very rapidly within a period of five years. Two years after her urinary symptoms started, she was forced to wear diapers. Subsequently, she had to use a permanent urine catheter until today.

Managing her low blood pressure was a real challenge. Despite taking medications which have blood pressure-elevating effect such as Fludrocortisone and Midodrine, she remained severely disabled by her low blood pressure. Whenever she tried to stand up, her head felt so heavy that she felt almost blackout. For the past one year, she could no longer walk even with assistance “” she became permanently bedridden. She had completely lost her independence. Her hands felt weak and stiff, to the extent that she needed to be fed. Over the past six months, she had also developed difficulty in swallowing and occasional choking.

Two months ago, she was admitted to the hospital for lung infection. In view of the severe difficulty in breathing, the doctors had to put her on a ventilator (a machine that helps to pump air into the lungs in order to improve the efficacy of breathing mechanism) in the ICU (Intensive Care Unit). Her parkinsonism had affected her chest muscles to the extent that she could not get enough oxygen into her lungs. Furthermore, her swallowing difficulty could have contributed to the lung infection “” instead of going into her stomach, the food or liquid might have entered her airways, leading to infection.

Over a period of two weeks, she gradually recovered and managed to breathe on her own. However, the level of oxygen in her blood continued to be low. It was at this juncture when the doctors recommended that she should use the oxygen concentrator at home (a machine that provides a continuous supply of oxygen) during the daytime and a ventilator during sleep.

The doctors also inserted a nasogastric tube (a plastic tube which is passed through the nose into the stomach) for the purpose of feeding and administering medications. They were worried that she would develop lung infection again if she resumed oral feeding.

Since she was discharged from the hospital, she had moved from Bukit Mertajam to Penang island, where she lived with her eldest son, Mr. Khor Chin Kooi. Her husband travels regularly to Penang island to visit her.

Two weeks ago, I received a phone call from Mr. Khor, informing me about the recent development in his mother’s condition. Having treated her for the past two years, I had witnessed the rapid deterioration in her physical condition. When I heard about Mdm. Cheng’s recent difficulty in breathing, I decided to pay her a visit while on holiday in my hometown (Alor Setar), which is quite near to Penang.

When I arrived at Mr. Khor’s triplex apartment, I saw his mother lying motionless on the electrical bed in the living room. She was still alert, as evident by the smile on her face. She tried to say something to me but I could not hear any voice at all. She had a tracheostomy tube on her neck, which the surgeon had inserted into her airways to facilitate regular suction of secretions (which may lead to difficulty in breathing or infection). Oxygen was delivered from the oxygen concentrator into her lungs via a plastic tube which was attached to the tracheostomy tube.

Parkinsonism-plus Team – Mdm. Cheng (centre) with Mr. Khor (right), Mrs. Khor (left) and the two maids at the living room. At the back is the electrical bed where Mdm. Cheng takes a nap during the daytime.

“During the daytime, my mother spends all her time in the living room. She rests on the lazy chair while watching television. When she is tired, she takes a nap on the electrical bed. I have two maids who are there all the time to attend to my mother. My wife (who is a housewife) and I also help out in feeding her the special milk through the nasogastric tube about six times a day,” said Mr. Khor.

Nothing feels like home – Mdm. Cheng watching television in the living room with her maid. The oxygen concentrator is placed on the floor (far right).

“During the first month after my mother was discharged from the hospital, I hired several nurses from a private hospital to take care of her round-the-clock, with each nurse working on eight-hour shifts. As the nurses taught us more and more about nursing care, using the ventilator, airway suction and feeding, we have managed to take care of my mother on our own. The nurses have been very helpful,” added Mr. Khor.

I felt very amazed as I heard about how well Mdm. Cheng’s family and maids have taken care of her. She was fortunate to have a “parkinsonism-plus team” at home, i.e. Mr. Khor, his wife and the two maids. Despite not having any medical training, all of them have managed to provide her with optimal nursing care at home.

I am also impressed by the way Mr. Khor and his “team” carry Mdm. Cheng on a wheelchair from the living room (located on the lowest level of the triplex apartment) up to the bedroom (located on the highest level of the triplex apartment) every night. Mr. Khor himself will switch on the ventilator and make sure that his mother is fine before he goes to sleep.

“Taking care of patients with parkinsonism-plus syndromes requires a lot of patience. We have great difficulty in communicating with my mother because she has completely lost her voice. As her hands are weak and stiff, she can’t even use the sign language to convey any message to us. There were times when we noticed that she was in distress, but we felt helpless as we could not understand what was bothering her. It was like playing a hide-and-seek game. We had to ask her – are you having difficulty breathing? Are you hungry? Are you having backache? These were the most frustrating moments,” said Mr. Khor.

Apart from the time and energy spent on caring for the patient, the cost of home care can be overwhelming, especially in the case of Mdm. Cheng. Said Mr. Khor, “I have spent a total of RM80,000 on all the equipment, such as electronic beds, ripple mattresses, pulse oxymeter (an electronic machine which measures the level of oxygen in the blood), oxygen concentrator and ventilator. For the nurses who took care of my mother round-the-clock, I had spent another RM15,000 per month. The monthly cost of accessories (e.g. syringes and plastic tubes) and medications is about RM1,000.”

Comfort during sleep “” The ventilator machine (left) in Mdm. Cheng’s bedroom, which is located at the highest level of the triplex apartment. Mr. Khor himself makes sure that his mother’s ventilator is properly set up every night.

“Understanding the nature of the illness is another important aspect in the management of brain disorders such as parkinsonism-plus syndrome. I have benefited a lot from Shy-Drager support group websites, which have helped me to understand the complications of MSA, especially the low blood pressure and lung infection. I know that the deterioration of my mother’s physical condition is inevitable because of the limited response to treatment (in parkinsonism-plus syndromes) and rapid progression of illness. As such, these patients really need emotional support from family members “” tender loving care or TLC,” added Mr. Khor.

What Mr. Khor has done for his mother is certainly admirable and touching. Due to the aggressive nature of the illness, and the resulting severe physical incapacitation, patients with parkinsonism-plus syndromes are the most difficult to handle. Providing care for patients with parkinsonism-plus syndrome is generally more challenging than those with Parkinson’s.

So far, I have not explained to Mdm. Cheng that she has reached the advanced or terminal stage of her brain disorder, and the fact that I can’t do much for her anymore. Breaking the bad news is always hard. Perhaps it is not the right time for me to reveal the truth to her. It is not my intention to withhold medical information from her.

However, deep inside, I think that Mdm. Cheng somehow knows that she has very limited chances of improvement and survival. Despite this, she is contented because she knows that her son is there beside her all the time, to care for her.