Durban - You are drunk. That’s an accusation Rajesh Nanjee has faced many times while trying to do his shopping in Durban.
The manager of a well known Musgrave restaurant even accused him of pretending to be disabled and “nonsensical behaviour” just to access special privileges like moving to the front of a queue.
However, Nanjee has Parkinson’s disease (PD) and said these judgements emphasised the need for public awareness ‒ and not just during World Parkinson’s Week which ends with a walk on the Durban beachfront today ‒ to prevent others from suffering the same ignorance.
While most people with PD are usually about 60 years old, Nanjee was only 34 at the time of his diagnosis.
With a successful career in the banking industry, a 3-year-old daughter, and further studies on the cards, life was good.
Then changing the clutch on his manual car became difficult and there was nothing wrong with the vehicle.
Next, Nanjee, always active and with a Comrades Marathon under his belt, assumed he had lifted too many weights when knotting his tie took longer than usual.
But when his dad died and he battled to keep up with the other pallbearers, his brother urged him to have a medical examination.
The diagnosis changed his life.
“Globally, disability and death due to PD are increasing faster than for any other neurological disorder,” the World Health Organization says on its website.
The WHO states that PD is a degenerative condition of the brain associated with motor symptoms like slow movement, tremor, rigidity and imbalance. It also causes other complications including cognitive impairment, mental health disorders, sleep disorders, pain and sensory disturbances.
In addition, dyskinesias (involuntary movements) and dystonias (painful involuntary muscle contractions) contribute to limitations in speech, mobility and restrictions in many life areas. Many people with PD also develop dementia during the course of their disease, according to the WHO.
Nanjee said despite the life-altering nature of the disease, there were very few people, including neurologists, who fully understand its impact.
He said mobility changed according to a cycle of medication.
“If you are at the beginning or end of the medication window, you find that your disability is more pronounced and then you tend to rely on your walking apparatus,” he said. This is what confuses people who see you struggling with walking apparatus and then later might see you are able to move around without it, he said.
Now aged 54, he still manages to live alone, drive and does all his household chores without assistance.
Nanjee said acceptance, learning as much as possible about PD and proper disease management were imperative to living a full life.
Exercise is an essential part of his management programme and by cycling three times a week he manages to stay fit and mobile.
Despite his disability he has also completed four Amashova cycle races, the annual 106km cycle race between Pietermaritzburg and Durban.
He also uses his sense of humour to ease things for people who are not sure how to react to his visible symptoms.
Nanjee usually says: “Guys, I have Parkinson’s, so if you notice something different don’t be alarmed just go with the flow.”
For example, because it affects fine motor skills, eating with utensils can be a problem but people must do what works for them, said Nanjee.
Rakesh Harribhai started Parkinson’s Disease South Africa NPC (Parkinson’s ZA) to promote public awareness about the disease and to help those affected with lifestyle management tools.
His mom had PD and he says that very little research had gone into the disease: the drug used is more than 50 years old.
Harribhai says because of their limited mobility and telltale shuffle that they develop, PD sufferers are often accused of being drunk.
As a South African organisation he believes the biggest breakthrough they can make is to help people become independent.
“My objective in starting the Parkinson’s Disease South Africa (Parkinson’s ZA) non-profit is to build an ecosystem connecting people impacted by Parkinson’s with each other and to build a support base of allied health practitioners and caregivers that are educated on the management of the disease. I want people impacted by it to know that they can thrive with Parkinson’s disease,” said Harribhai.
In the past year Parkinson’s ZA held 30 free workshops in Durban based on a multidisciplinary care model which incorporates exercise, physiotherapy, occupational therapy and speech therapy, all in collaboration with the Parkinson’s and Movement Disorder Society in India.
Those who want more information on the beachfront walk which starts at 9am, or the workshops can contact Sabitha on 083 258 3604 or visit www.parkinsonsza.org.
The Independent on Saturday