Durban - Boxing legend Muhammad Ali, George H Bush the former US president, and actor Michael J Fox are just a few of the well-known people who have suffered from Parkinson's disease (PD).
Although it's the fastest growing neurological disease in the world, most people only recognise it by the tell-tale tremor it gives some of its victims.
Rakesh Harribhai is the founder of Parkinson's ZA, South Africa’s only NGO dealing with the condition and treating patients for free.
He says every 2.5 minutes someone in the world dies from Parkinson’s disease.
“While there is limited data on its prevalence in South Africa, it is safe to say that it mirrors the growth globally and is adding to our disease burden,” he said.
Recently the World Health Organization warned that globally death and disability as a result of PD had increased faster than in other neurological disorders.
The WHO says global estimates in 2019 showed that over 8.5 million individuals had PD and in the same year it caused 329 000 deaths, an increase of over 100% since 2000.
Harribhai said while it was a condition found mainly among the aged, young people weren’t exempt from it.
“Historically we probably had aunts or uncles or grandparents who had Parkinson’s but we just said they are getting old.”
His journey with Parkinson’s started when his mom was diagnosed with it. She had it for 17 years before she passed away.
Harribhai said learning about the disease was a lonely journey as there was very little awareness of it and the 50 minutes they spent with a neurologist was not enough to answer all their questions.
Now, through Parkinson’s ZA he wants to help other patients and their family members affected by it.
Parkinson’s ZA has established a working relationship with the Parkinson’s Disease and Movement Disorder Society (PDMDS) of India.
He said PDMDS was founded in 2001 and has since opened over 60 community-based support centres in India.
“Their success in replicating a multidisciplinary model of care across India brings us great hope to bring the same positive impact to people with Parkinson's in South Africa.”
He said the multidisciplinary model was based on the principles of physiotherapy, occupational therapy, speech therapy, psychology, neuropsychology, nutrition, dance and movement therapy and Yoga.
So far Parkinson’s ZA has enrolled several patients for weekly Thursday morning therapy sessions at Kendra Hall in Overport.
Harribhai says the programme will be scaled up and replicated in other metros in South Africa within the next six to 12 months if they can get the necessary funding for it.
He said the aim was to build a platform for those impacted by the disease and to teach people that it was possible to thrive with Parkinson’s disease.
The WHO described PD as a degenerative condition of the brain associated with motor symptoms (slow movement, tremor, rigidity, walking and imbalance) and a wide variety of non-motor complications (cognitive impairment, mental health disorders, sleep disorders and pain and other sensory disturbances).
It said a progression in symptoms could result in high rates of disability and care requirements, while many people with PD also developed dementia during the course of their disease.
Harribhai has appealed to anyone who wanted to learn more about their programme to contact him on Whatsapp on 083-258+3604 or by email at [email protected]
The Independent on Saturday