Covid makes life harder for people with Parkinson’s
From verbal abuse to sheer ignorance, people with Parkinson’s disease have to deal with daily battles that go far beyond physical signs of the condition such as tremors or difficulties with balance.
That is why people who suffer from the neurodegenerative disorder are asking for more awareness.
“The Covid-19 pandemic has affected our lives so much,” said Shakil Merchant, 63, a father of three.
“I am not scared of getting it, but of people thinking that I have Covid, because then I would be rushed to the hospital and kept without my medication and I would be dead.”
He said there were many people who did not know about Parkinson’s disease.
“When we shake a little, it doesn’t mean that we have Covid or are drunk,” he said.
Mr Merchant had Parkinson’s disease diagnosed 15 years ago and, like many people with the condition, has been living an uncertain life since then.
One of his earliest symptoms was a stiff neck. His condition has now developed into attacks that affect the entire body.
He takes medication every eight hours.
Recalling a recent incident at a government department, he said: “The security guard saw me shake and insisted that I was sick with Covid.”
The guard called his superiors who started questioning Mr Merchant and wanted to call an ambulance.
“The tension makes it worse, so my speech got slower,” Mr Merchant said.
“When I told them I had Parkinson’s they said they had never heard of it and insisted I was sick.”
Since the pandemic began, Mr Merchant has stopped going to public places and limits trips to his workplace.
An estimated seven to 10 million people worldwide have Parkinson’s disease. There is no known cure.
Symptoms include tremors, slowness of movement, rigid limbs and problems with gait and balance.
But the non-motor symptoms are often worse and include apathy, depression, constipation, sleep disorders, loss of smell and difficulty with memory, among other problems with brain functions.
After Vonita Singh’s father, who had the disease, died in 2009, she discovered that despite being one of his primary caregivers there was a lot she and others did not know about the disease.
As a result, Ms Singh founded Movement Mantra in 2014, in memory of her father. The aim was to help spread awareness and support people with the disease through movement.
“Only after I lost him [did I realise] that we did not know what was happening to dad,” she said.
“We knew the name, yes, but the progression we were not aware of. I realised that I made mistakes. We thought we were just being good caregivers by doing everything for him.”
Ms Singh and her two brothers helped their father tie his shoelaces, fed him when he lost control of his hands and supported him when he could not walk.
Little did she realise that she was also helping his muscles to become stiff.
“We blocked his movement and in four years he could not open his arms,” she said.
“We made him worse, so my first mantra is: do not babysit a person with Parkinson’s – they need to move. The muscles come with a disclaimer, ‘use me or lose me’.”
Many people with Parkinson’s disease are afraid to tell their friends and family.
“They are worried they’ll be shunned by the public,” Ms Singh said.
“People with Parkinson’s need more visibility and the more we accept them, the better the intervention.”
Ms Singh’s father had the condition diagnosed when he was 67 and he died aged 73. But most people with Parkinson’s first develop the disease at 60, with about 5 to 10 per cent having it diagnosed before the age of 50.
Dr Zakaria Ammache, a specialist in Parkinson’s at Sheikh Shakhbout Medical City in Abu Dhabi, said that with proper management patients could live a relatively normal life.
“I do want people to stop looking up information from the internet,” he said. “We need to raise awareness, but through the proper means by asking a healthcare professional.”