'It began with a stiff neck': stories from those affected by Parkinson's disease

Fighting daily physical, mental and social battles, people with the neurodegenerative disorder call for more awareness

Vonita Singh of Movement Mantra, Parkinson’s support group. Courtesy Vonita Singh

From verbal abuse to sheer ignorance, people with Parkinson's disease have to deal with daily battles that go far beyond the physical signs of the condition, such as tremors or a lack of balance.

That's why the one thing people with this neurodegenerative disorder are asking for is more awareness.

Only after I lost him I realised that we did not know what was happening to Dad. We knew the name, yes, but the progression, we were not aware of.

“There is nothing that has scared me more in my life than the period we are in now, with Covid. It has impacted our lives so much,” said father-of-three Shakil Mohammed Merchant, 63.

“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. I just want awareness to improve. When we shake a little, it doesn’t mean that we have Covid or are drunk,” he said.

Mr Merchant was diagnosed with PD 15 years ago and, like many, has been living an uncertain life since then.

He takes his medication every eight hours like clockwork. One of his earliest symptoms was a stiff neck, which has now developed into attacks that affect his entire body.

When this happens, the business owner goes to his car for a few minutes until his muscles loosen up.

Recalling a recent, but regular, occurrence at a government department, he said: “The security guard saw me shake and insisted that I was sick with Covid. He then called his superiors who started questioning me and wanted to call an ambulance. The tension makes it worse, so my speech got slower. When I said I had Parkinson’s they said they had never heard of Parkinson’s and insisted I was sick,” he said.

Since the pandemic began, Mr Merchant has stopped going to public places and has limited his outings to the workplace.

Movement Mantra, a Parkinson’s support group, was set up in 2014. Courtesy Vonita Singh

An estimated seven to 10 million people worldwide have Parkinson's disease.

There is currently no known cure.

Symptoms include tremors, slowness of movement, limb rigidity, and gait and balance problems.

However, the non-motor symptoms are often worse and include apathy, depression, constipation, sleep disorders, loss of smell and cognitive impairment.

When Vonita Singh’s father died of Parkinson’s 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 PD through movement.

“Only after I lost him [did I realise] that we did not know what was happening to Dad. We knew the name, yes, but the progression, we were not aware of. It is one thing to read about it, but another when you experience it and we were not prepared. I realised that I made mistakes and that awareness was not there.

“As a caregiver, we thought we were just being really good caregivers by doing everything for him.”

Vonita Singh set up Movement Mantra in memory of her dad. Courtesy Vonita Singh

Ms Singh and her two brothers would help their father tie his shoelaces, feed him when he lost control over his hands and support him when he could not walk.

Little did she realise that she was also helping his muscles stop moving and completely stiffen up over time.

“We blocked his movement and in four years he stopped being able to open his arms. 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'. What Parkinson’s does is cage you in your body, so you need to move. Move mindfully and with deliberate intentions," she said.

In general, Parkinson’s is considered taboo, with many afraid to reveal that they have the disease to their friends and family.

“Many are ashamed because they are worried they'll be shunned by the public. Socially, this disease is a challenge and a trauma with the loss of speech, facial expressions and movement. People with PD need more visibility and the more we accept them, the better the intervention.”

Masked facies (also known as hypomimia) is the loss of facial expressions and is most commonly associated with Parkinson's. It is named as such because the condition gives the affected person a fixed, mask-like expression.

Ms Singh's father was diagnosed at the age of 67 and died at 73. However most people with Parkinson's first develop the disease at 60, with about 5 to 10 per cent getting it before the age of 50.

Dr Zakaria Ammache, a specialist in Parkinson's at Sheikh Shakhbout Medical City, Abu Dhabi, said that with proper management, patients can live a relatively normal life.

“I do want people to stop looking up information from the Internet and going to 'Dr Google'. We need to raise awareness, but through the proper means by asking a healthcare professional.”

Dr Ammache said that one of the non-motor symptoms of the disease is depression and it can manifest a few years before the physical problems begin.

"Some people with Parkinson's get depression before the disease," he said.

PD patients and caregivers will often report frequent, uncontrollable outbursts of crying or laughing.

"Talking to your doctor and health professionals is the best way to raise your awareness," he said.