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.

During one of my Neurology Outpatient Clinic sessions, a 65-years old gentleman was diagnosed for the first time to have Parkinson’s Disease (PD). He had been having difficulty walking and slowness of movement for about six months. Upon hearing the diagnosis, his daughter was obviously distressed and sad. After prescribing the medication, the patient left my clinic but her daughter stayed to ask me this question – doctor, for how many months longer can my father live?

I gave her a lengthy explanation about the illness and reassured her that she had misunderstood the illness. Before she left the clinic, she thanked me for giving her a big relief. She must have thought her beloved father would live for only another few months after the diagnosis was made.

This was a good example to illustrate the importance of having a clear understanding of this illness. Patients and caregivers often have many questions and misconceptions regarding PD. Unfortunately, doctors are often too busy to give adequate explanation about the illness in the clinic. Thus, the objective of this article is to clarify various misunderstanding about the illness that usually cause unnecessary anxiety among newly diagnosed patients and caregivers. The following is some of the common misconceptions that I have commonly encountered.

a) When you have PD, you only have several months left to live
b) PD is caused by stroke
c) PD often leads to mental disability
d) Parkinson’s patients will be bed-ridden very soon after diagnosis
e) PD is caused by unhealthy food
f) The children of Parkinson’s patients have a strong possibility of inheriting the illness
g) PD can be transmitted to family members by an infective process

 

a) When you have PD, you only have several months left to live

The medication (levodopa) for treating PD was discovered only in the 1960′s. Before the 1960′s, one study showed that untreated patients lived for an average of 10 years after diagnosis. As the physical disability in PD worsened with time, eventually patients became bed-ridden and succumbed to lung infection. This contributed to the shorter life span of Parkinson patients compared with those without PD.

Following the introduction of levodopa, the chances of survival of treated patients had significantly increased. With the use of levodopa, another study showed that patients’ quality of life had significantly improved and their life span was almost the same as the healthy population.

Nowadays, there are more and more Parkinson’s patients who succumb to other common illnesses of old age such as stroke and heart attack, rather than succumbing to PD itself.

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b) PD is caused by stroke

As PD and stroke usually occur in the elderly people, naturally some people think PD is caused by stroke. Actually both this illnesses are totally unrelated to each other.

Stroke is characterized by sudden weakness of body (usually one side of the body) caused by blockage of blood vessels in the brain and thus, reduced amount of blood going to the brain.

In contrast, PD is due to a progressive loss of certain cells in the brain that lead to slowness of movement. The symptoms of PD begin very slowly over months to years, unlike in stroke. Very often, Parkinson’s patients themselves may not remember exactly when the subtle symptoms of PD had started. In fact, many Parkinson’s patients do not realized that they have PD until the early symptoms are noticed by family members of friends.

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c) PD often leads to mental disability

Some people think that the changes in the brain of Parkinson’s patients will lead to mental disability such as dementia, a condition whereby patients have progressive memory loss and change in behaviour. In fact, PD is often mistaken for Alzheimer’s Disease (AD), a common cause of dementia. One of the main reasons why PD is often mistaken as AD is because both illnesses are usually seen in the elderly people.

The symptoms of AD are exactly opposite of that in PD. In the early stage of AD, patients have poor memory but good body movement. In contrast, in the early stage of PD, patients have good memory but poor (slow) body movement.

However, in the late stage of PD, some Parkinson’s patients do subsequently develop dementia (PD Dementia or PDD). Fortunately, PDD occurs in only about 15% of Parkinson’s patients.

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d) Parkinson’s patients will be bed-ridden very soon after diagnosis

As mentioned earlier, the physical disability of Parkinson’s patients does worsen as time goes by. Until today, there is still no cure for this illness. Thus, many Parkinson’s patients did become bed-ridden many years ago when there was no effective treatment for this illness.

However, with the advent of more effective treatment (drugs and brain surgery) for PD, the scenario has changed for the better. The available treatment has made it possible for many Parkinson’s patients to much better symptom control and physical mobility for the rest of their lives. In fact, it is very unlikely for a Parkinson’s patient to be wheelchair-ridden. Nowadays, many Parkinson’s patients continue to be reasonably active in their daily life and career for up to 10-15 years after having the illness.

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e) PD is caused by unhealthy food

The role of unhealthy diet (high cholesterol or fat intake) in stroke is well established. In contrast, the role of dietary factors in the causation of PD remains speculative.

Some studies have shown that PD has been associated with inadequate intake of vitamin E. In a local study on Parkinson’s Disease in University Hospital, Kuala Lumpur, it was revealed that there were disproportionately higher number of Malaysian Chinese patients than other races. It was postulated that it could be due to the dietary habit of Malaysian Chinese, who preferred raw or half-cooked vegetables that may contain pesticides (chemicals that may cause changes in the brain leading to PD).

Interestingly, people who regularly drink coffee and black tea have been reported to have lower chance of developing PD.

In conclusion, it has to be emphasized that all these are merely observations and we cannot confirm a direct role of diet in the causation of PD.

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f) The children of Parkinson’s patients have a strong possibility of inheriting the illness

The role of genetics (inheritance) in the causation of PD has been well established. In other countries, it has been reported that 6-24% of Parkinson’s patients have family members who affected by the same illness. However, in the local study at University Hospital, Kuala Lumpur, only 2% of Parkinson patients have family history of similar disorder. Thus, the possibility of children of Parkinson’s patients in Malaysia inheriting the same illness is very small and should not be
a major cause of concern.

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g) PD can be transmitted to family members by an infective process

This is a cause of concern among the immediate family members of Parkinson’s patients. Some people think that PD is a form of virus infection (such as flu) that can be transmitted to other family members through close contact. This belief is unfounded as PD is not an infective process.

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Conclusion

The misconceptions regarding PD, which stem from ignorance, are very common in Malaysia. Lack of information on PD is a major problem in this country. It is hoped that the Lloyd Tan website will help the Malaysian Parkinson’s community have an adequate understanding of the nature of PD, in order to avoid unnecessary anxiety and fear.