Parkinson’s disease is a neurodegenerative brain disorder that progresses slowly in most people. While the symptoms might take years to develop, living with a disease that gets worse with time is tough. What’s tougher is there isn’t much one can do about it. In Nepal, many people don’t know about this disease and attribute the symptoms to old age. How difficult is living with Parkinson’s disease and what can be done? Isha Upadhyay talks to a few people suffering from Parkinson’s disease as well as experts to find out.
Eight years ago when Madan Krishna Shrestha was diagnosed with Parkinson’s disease, people had no idea what it was. When he said he had Parkinson’s and people replied with a ‘parking what?’ he knew there was a lot to be done to raise awareness about it. Not much has changed almost a decade later, with blank faces still greeting these patients whenever they talk about their disease.
When Shrestha realized his speech was slurring and his movements were not as fluid as before, he decided to see a doctor. After spending a few hours at the hospital, he was diagnosed with Parkinson’s. “I have heard about a lot of people who were misdiagnosed for years before they finally knew what was wrong with them. I’m glad I didn’t have to go through that frustration,” he says.
Banita Khanal was about to give her 12th grade board exam when she first noticed the tremors and rigidity in her hands. She consulted many doctors but she was undiagnosed for years. She reveals that when she talks about Parkinson’s disease, the most common response she gets is ‘what is that?’ “My aim in life is to have people stop asking what it is and be aware about it and know how crippling it can get. Sometimes, it’s hard for us to even recreate our signatures,” she says.
“Parkinson’s is a progressive disease of the nervous system marked by tremor, muscular rigidity, and slow, imprecise movement, and it mainly affects middle-aged and elderly people. But the diseases is also being seen in young people lately,” says Dr Raju Poudel, DM in Neurology, Grande International Hospital. It is associated with a deficiency of the hormone dopamine. Dopamine is one of the most vital hormones in the body, and the lack of it affects many other bodily activities as well which is why most of the patients of Parkinson’s also suffer from constipation and depression.
A few tell tale signs of the disease can be summarized by the abbreviation ‘TRAP’, which is easy to remember because the disease traps you forever. They are Tremor, Rigidity, Akinesia/ Bradykinesia (slow movements), and Postural imbalance. There is no need to do any sophisticated MRI tests if even two of these symptoms are present as 95% of the time it is Parkinson’s. The tests follow if the doctor or the patient wants to rule out all other possibilities. The early stage begins with slow and rigid movements on one side of the body. Most people have a masked face because their face shows no emotions. However, at first, most people are misdiagnosed.
Khanal’s misdiagnosis began when people just chalked her symptoms off to ‘examination anxiety’ and it stuck until she went to Delhi. After her diagnosis, she revealed, she was happy that they finally identified what was wrong with her, and thought that the healing process could begin. Her hopes, however, drained as the doctors told her that it was a lifelong disease and she remembers how she and her mother broke down and cried in front of the medical team.
She got married before she was diagnosed and there was a time when she was too scared to even go out of the house. There were many instances where she would suddenly find herself with no control over her limbs and fall down. She remembers going to her husband’s friend’s wedding and falling down while on stage. When she was finally able to calm herself and became aware of her surroundings, she realized that she was sitting on the bride’s chair. She is still mortified by that memory.
Tilak Sapkota, 63, was 58 when he was diagnosed and says that the main difference in his life comes from slow movements. He and his wife had always planned to travel the world when they retired but he says that with his condition progressively getting worse, he knows it is no longer possible.
Sapkota has set multiple alarms on his phone to remind him to take all his medicines. Starting from seven in the morning, he takes medicines almost every hour till 6 pm and then another one before he goes to sleep. “My life and my families movements revolve around my medication,” he says.
It’s a disease that you shouldn’t hide, both the husband and wife agree on this. A private man, Sapkota too tried, and failed to hide his symptoms. “The way he moved and talked were very clear indications that he wasn’t really alright, even when he kept insisting on it,” says his wife, Bidya Sapkota. He was a full time teacher before he was diagnosed, and before long he was the talk of the college. The usually curt professor had now started dragging his feet while walking, spoke with a slur and his handwriting too was getting affected. He realized he couldn’t cope with a full-time job and is now a part-time hotel management teacher at Silver Mountain.
According to the data collected by Grande International Hospital, there are approximately 300 people with this disease that come for regular follow-ups. One out of 100 people above the age of 60 have Parkinson’s disease which means there should be approximately 20 to 30 thousand people in the country suffering from it. In the last decade, there has been a significant rise of patients between the ages 25 to 50 as well. “However, most people above 60 just brush it off to old age and haven’t been diagnosed because they aren’t aware that it’s a disease and that the symptoms can be controlled. That is why there seems to be more young patients,” says Dr Poudel.
A non life threatening disease, there are many medicines available to control the symptoms. A patient can live an independent life for 10 to 15 years after diagnosis, but they will progressively become more dependent. “It is harder for younger people as they have their whole lives in front of them, but there are other alternatives,” says Dr Poudel.
After going on medication, Khanal says her situation has improved immensely but even then, there are times where medicines cannot control the symptoms. Luckily for Khanal, at her age, the disease progresses really slowly. She has been living with it for almost 20 years now and is still active, and has become the voice behind the disease, organizing various awareness programs and being active on ‘Parkinson’s support Nepal,’ a Facebook group.
Another treatment is the Deep Brain Stimulation (DBS). This is a surgical process where a pacemaker like object is inserted in the body that sends continuous stimuli to the brain to help with dopamine production. Madan Krishna Shrestha went through this procedure, after being on low dose medication upon diagnosis before gradually increasing it, and says that it has helped him a lot. “When I was first told about this surgery, I was very skeptical. I talked to my daughter and everyone else about it, more so because of the cost of the procedure, which was a staggering 14 hundred thousand rupees, after heavy discount” says Shrestha. He does needs to take his medications but a lower dose is required.
The government agrees that there is still much to be done in terms of raising awareness about the disease. “Although a subsidy of a hundred thousand rupees is available for checkups, the medication doesn’t come at subsidized rate,” says Bhogendra Dotel, spokesperson of the Ministry of Health, adding that because the disease is slowly showing its presence in Nepal, they are planning to give it the attention it warrants. According to Dr Poudel, this disease wasn’t much of a concern for the nation when the average mortality rate of people was low. But with the increasing average lifespan, it’s something we all need to be aware about.