A South African non-profit organisation dedicated to improving the quality of life of people affected by Parkinson’s disease is bringing its support programme to Pretoria.

Parkinson’s ZA is launching its new Pretoria support group on August 29, which will offer free weekly sessions to people living with Parkinson’s, their families and carers.

The organisation is a non-profit and public benefit organisation focused on patient advocacy and providing people affected by Parkinson’s with information and practical tools to help them live as independently as possible.

Founder Rakesh Harribhai said the organisation was established following his own experience of caring for his mother, who lived with Parkinson’s disease.

“Caring for my mother made me realise how difficult it can be for families to understand the condition and know what to expect after a diagnosis,” said Harribhai.

He said families often turn to the internet for information because there is limited accessible information explaining what Parkinson’s disease is and how the condition can progress.

“Our objective as Parkinson’s ZA is to basically expand awareness. Number two, we want to give people the tools to live their lives as normally as possible,” he said.

Parkinson’s disease is a progressive neurological condition that can affect movement, speech, balance, sleep, mood and other aspects of daily life.

According to the World Health Organization, global cases are projected to more than double from an estimated 11.8 million in 2021 to more than 25 million by 2050.

Although the condition is often associated with tremors, Harribhai said many other symptoms can affect people living with Parkinson’s.

He said these include a ‘freezing gait’, where a person suddenly finds themselves unable to continue walking, as well as difficulties with swallowing and other involuntary functions.

Harribhai explained that Parkinson’s affects brain cells responsible for producing dopamine, a neurotransmitter that plays an important role in enabling smooth movement.

“The organisation’s support programme therefore focuses on more than simply bringing people together. Its multidisciplinary approach includes physiotherapy, occupational therapy and speech and language therapy.”

According to Harribhai, sessions can cover mobility, exercise, personal hygiene, getting in and out of bed or a vehicle, eating and swallowing, as well as other practical aspects of daily life.

Harribhai said the programme is intended to give people practical tools that can help them maintain their independence.

The programme also aims to tackle the social isolation that some people living with Parkinson’s experience.

Harribhai said some people become reluctant to leave their homes because they are concerned about how others will perceive them as their symptoms become more visible.

“The support group will provide an environment where people affected by the condition can meet others facing similar experiences, form friendships and learn from one another,” he said.

He said people living with Parkinson’s themselves have an important role to play in helping others understand and manage the condition.

Family members, spouses and carers are also encouraged to attend the sessions.

Harribhai said Parkinson’s does not only affect the person diagnosed with the condition, but also the people around them who provide care and support.

“We actually use the term people ‘impacted’ by Parkinson’s disease, not people with Parkinson’s disease, because it’s your sons, your daughters, your wives, your friends, your immediate community that’s impacted,” he said.

Parkinson’s ZA began its first support group in Durban in 2022 before expanding to Cape Town and Johannesburg.

The Pretoria programme will become its fourth support group.

The organisation has partnered with Rehabworx, a neuro-rehabilitation practice based in Groenkloof, to facilitate the Pretoria programme.

“Parkinson’s ZA partners with rehabilitation practices in different areas to provide the professional expertise required for its multidisciplinary sessions,” said Harribhai.

Although the programme will operate from Groenkloof, it is intended to serve people affected by Parkinson’s across Pretoria and surrounding areas.

Harribhai encouraged people who have recently been diagnosed, or families unsure where to turn to, to join the Parkinson’s ZA community and make use of the support available.

The launch will be from 09:00–12:00 at the Capital Hotel Menlyn Maine.

Do you have more information about the story?

Please send us an email to bennittb@rekord.co.za or phone us on 083 625 4114.

For free breaking and community news, visit Rekord’s websites: Rekord East

For more news and interesting articles, like Rekord on Facebook, follow us on Twitter or Instagram or TikTok or WhatsApp Channel