Once diagnosed with Parkinson’s disease, a person is likely to experience many emotions and might have many questions. Sadly, there are not many organisations working for to spread awareness of Parkinson’s in Nepal. Today, when the whole world is marking April as Parkinson’s Awareness Month, no one in Nepal seems interested in organising a programme to raise awareness regarding this degenerative disorder of the Central Nervous System.  

What Parkinson’s is

Parkinson’s disease is a movement disorder that is chronic and progressive, meaning the symptoms continue and worsen over time. It is caused by a progressive impairment or deterioration of neurons in the area of the brain known as the substantia nigra. Its symptoms include tremors, slowness of movement, stiffness of the limbs and difficulties with gait and balance. Although there is presently no cure, there are treatment options, such as medication and surgery to manage the symptoms and mollify the affect of the disease.

Generally considered a disease that attacks people during the later stages of life, Parkinson’s disease can affect young people as well. Although rare, there are people below the age of 40 with Early Onset Parkinson’s Disease. Canadian-American actor Michael J Fox was diagnosed with Parkinson’s disease when he was 29 years old. He disclosed his illness in public after seven years when it got too difficult to hide his symptoms. He has since become

a vocal advocate of research towards finding a cure for the disease. The Michael J Fox Foundation aggressively funds research for a cure and also assists the development of improved therapy for those living with Parkinson’s. There are many similar groups and foundations around the world working to raise raising awareness of Parkinson’s disease.

No support

Health professionals and other concerned people are also getting involved in raising awareness as well as research on Parkinson’s. However, in Nepal, the scenario is very different. Here, neurologists are busy with their patients. So-called social workers earn money in the name of the disabled and the needy. NGOs and INGOs seem to be ready to work for the cause but who is going to present a proposal when no one seems concerned about the disease and its problems. Working for Parkinson’s might not be as profitable as operating an old-age home, providing employment to women or making a documentary about the disabled. Maybe that is the reason why Parkinson’s has remained unaddressed even though its effect on victims is devastating. Another reason could be that Parkinson’s mostly affects the elderly so many people do not consider it a serious ailment as the elderly stay at home most of the time anyway or are already relegated to a retired life.

When anyone says they have Parkinson’s disease, the first question they have to tackle almost invariably is, ‘What is that?’ For many, that is the first time they hear about the disease. And if they already know, they most certainly assume that the disease occurs during old age and causes tremor and nothing more. Now imagine a situation where someone suffers from this rare condition at a very young age. They are diagnosed when they are supposed to start their career but are never be able to compete for employment. No doubt, they would feel helpless when nobody understands their condition. They might want to start working for awareness of the disease, only to discover that nobody supports or encourages them.

The need for awareness

As Parkinson’s is diagnosed based on the symptoms alone, there are no any tests available for its early diagnosis. It depends on how experienced a neurologist is and how aware a patient and their family is. Without proper knowledge about the symptoms, no one can be certain if they have a disease. Parkinson’s disease is often confused with depression and anxiety. In Nepal, where the superstition of bhoot lageko, boksi chadeko, pitri lageko (spirit possession) is still prevalent, we can’t expect people to believe a neurologist when even a CT scan doesn’t show anything abnormal. This is a major reason why there is a need to spread awareness of Parkinson’s and its symptoms.

Parties who should work for this cause could be the patients themselves, their caretakers, doctors, neurologists, social workers and non-profit organisations. The patient’s desire alone can never work because they have physical and psychological problems to cope with. Hence, those concerned and stakeholders must take actions as April is here. We could celebrate Parkinson’s Awareness Month in Nepal too. If an organisation shows interest in funding and some social workers show interest in volunteering, we can organise an educational programme to raise awareness and encourage people to talk openly about the disease.

We can’t expect research here in Nepal but awareness is possible. We can at least gather people with Parkinson disease, run a group. People within the group can share their stories with each other that might help strengthen themselves and they might feel they are not alone. I hope to see some people interested in this idea and join hands with me for this genuine cause.

Khanal holds a Masters in Business Studies from Tribhuvan University