With an estimated 10 million people worldwide suffering from PD, it is important to bust some myths about the disease on World Brain Day

Among the most common age-related neuro-degenerative diseases affecting people above the age of 60 is Parkinson’s Disease (PD). It is second only to Alzheimer’s. With an ageing population and increased life expectancy due to better healthcare, India will see a proportional rise in cases of PD, making it a major health problem. The disease was first described by a British doctor named James Parkinson in 1817 as the “shaking palsy.” Today, an estimated 10 million people worldwide have PD and it affects one per cent of the population above the age of 60. Men have a 50 per cent higher chance of developing the disease as compared to women. Though the prevalence of this disease in India is less compared to other countries, the absolute number of cases is much higher due to a larger population. Plus within India, the prevalence of this disease varies across regions and the Parsi community has the highest cases.

PD is a slowly progressive disorder with no identifiable cause. It results from loss/degeneration of dopamine-producing cells in a region of the brain called the substantia nigra. The cause of cell death/degeneration is not known. The disease manifests when more than 60 per cent of the dopamine-producing cells are lost. Dopamine is a neurotransmitter which helps in transmitting signals to different parts of the brain to smoothen our movements.

Like many other diseases, PD is also not fully understood despite all the research available today and, therefore, many myths are associated with it. Statistically there is an increased risk of developing PD in people exposed to certain pesticides and among those who have had prior head injuries, while there is a reduced risk in people who smoke tobacco and drink tea or coffee. Genetic factors have been implicated but have not been proven conclusively in the transmission of the disease.

It usually starts with a barely- noticeable tremor in just one hand followed by slowing of movement and stiffness in the limbs. As the disease progresses, simple tasks of walking, writing or talking become difficult and the muscles become rigid. So what are the common myths and misconceptions associated with this disease? As the world celebrates July 22 as the ‘World Brain Day’, it is vital to bust some of the myths on PD sequentially.

 Myth: Hand tremors are a confirmed sign of PD.

Fact: While it is true that hand tremors are seen in most patients of PD, they may be absent in up to 25 per cent of the patients. Tremors can also be caused by stroke, multiple sclerosis and traumatic brain injury. However tremors in PD always occur at rest (while not performing any movement of the limb) and always begin on one side of the body.

Myth: PD only affects our mobility.

Fact: Tremors, stiffness or rigidity of the limbs and slowness to initiate movement are the hallmark of this disease. However, the body also loses its ability to balance. Besides this, there could be difficulty in swallowing, chewing and trouble speaking clearly. There is increased sweating and salivation. Day time sleepiness and loss of urinary control are other major problems faced by these patients, combined with loss of visual-spatial orientation and visual hallucinations.

Myth: PD is hereditary.

Fact: Most cases aren’t hereditary. It’s rare for the disease to be passed down from parent to child. However, having a first-degree family member (a parent or sibling) with Parkinson’s raises the risk by three per cent.

Myth: PD is not treatable.

Fact: There is treatment but there is no cure, so what does that mean? With treatment a person with PD can lead a good quality of life but the medications have to be taken life-long. The medications only control the symptoms and do not take care of the underlying cause of the disease. It is just like treating diabetes or high blood pressure. We cannot cure these diseases but can bring them under control with medication.

 Myth: Drugs used to treat PD are not safe and can worsen the disease.

Fact: There are no drugs in Allopathy without side-effects. Drugs used in the treatment of PD can over a period of five to 10 years cause dyskinesia or abnormal, involuntary and uncontrolled movements of the limbs, eyes or the lips. This may require adjustments of the frequency and dose of the dopaminergic drug along with the addition of another medication. These drugs are safe for long-term use.

Myth: The disease affects only the elderly.

Fact: It is true that PD has higher prevalence in the age group above 60 years. However, in India nearly five per cent of the patients are below 40 years of age. More than 10 per cent people now being diagnosed in the US are less than 40 years old. A recent study found that the prevalence of the disease ranges from 41 people per 1,00,000 in the fourth decade of life to more than 1,900 people per 1,00,000 among those who are 80 years and older.

Myth: When medications fail, there is no hope.

Fact: When a person has disabling tremor or dyskinesia, which is unresponsive to medication or if the symptoms become resistant to medication after many years of treatment, these patients can be offered a surgical option called the Deep Brain Stimulation (DBS). DBS can help relieve the symptoms of tremors, stiffness or rigidity and dyskinesia. In this procedure, electrodes are placed in the brain and are connected to a stimulator device. Similar to a heart pacemaker, the neurostimulator generates electrical impulses to regulate brain activity. Because DBS can worsen cognition or memory problems, it is not recommended for people with dementia.

Myth: The disease follows a predictable pattern of progression.

Fact: PD is very unique to each person. The progression of this disease cannot be predicted even by experts, implying that a few years into the disease some people may be in a far better physical shape as compared to others.

Myth: One can get tested for PD in a lab for confirmation of the diagnosis and early treatment.

Fact: The diagnosis of PD is based on clinical examination of a patient and not based on lab reports or brain imaging. The identification of at least two symptoms among bradykinesia (slow movements), rest tremor, rigidity and postural instability can confirm the diagnosis. Brain imaging may be used to look for other causes of PD-like diseases.

Myth: PD is fatal.

Fact: Although PD is a disabling disease and its diagnosis is devastating, it is not a death sentence. It is not like a heart attack or a stroke that can immediately be life threatening. It is a slow, progressive disease, which over a period of time makes the patients dependent on others for their mobility and activities of daily living. However, the progression takes many years and with continued medication many patients are able to lead a normal life. Boxing legend, Mohammad Ali lived with this disease for 32 years and Hollywood star Michael J Fox has been living with PD for the last 29 years.

(The writer is a consultant Neurosurgeon at Apollo Hospital)