Parkinson's disease, a progressive neurodegenerative disorder, is rapidly becoming one of the most prevalent conditions worldwide.
Despite being recognised as the fastest-growing neurodegenerative disease — meaning nerve cells in the brain slowly deteriorate, leading to a decrease in dopamine production crucial for motor control — the primary treatment for Parkinson's remains a drug that was developed more than 50 years ago.
This raises significant concerns about the adequacy of current treatment options and the need for more innovative approaches to improve the lives of those affected by this condition.
A common misconception is that Parkinson's predominantly affects elderly white males in first-world countries. This myth has been debunked multiple times, revealing it does not discriminate based on age, race or geographic location.
In South Africa, as well as across the African continent, it affects individuals from all communities.
It primarily affects movement, causing symptoms such as tremors, stiffness and difficulty with balance and coordination.
Tragically, many people in these regions remain undiagnosed and untreated, worsening the challenges they face. Suffice to say the estimated 10-million people diagnosed with Parkinson's disease worldwide is significantly understated.
In rural indigenous African communities, it is often misunderstood and shrouded in taboo. It is frequently associated with witchcraft, leading to the isolation of those suffering from the condition.
This stigma further alienates individuals with the disease, preventing them from seeking the help and support they desperately need.
Raising public awareness and educating the general population about its symptoms and impacts is therefore crucial to reversing this harmful perception.
The erratic and unpredictable nature of the symptoms contribute to the misunderstandings surrounding the condition.
The on/off phenomenon means that a person with Parkinson's might appear perfectly normal while entering a shopping mall, but could leave with a frozen gait or a “drunken” shuffle due to dyskinesia.
It is imperative that during Parkinson's Awareness Month, we shine a light on the lack of support for people impacted by Parkinson's and advocate for change
This sudden change in mobility can lead to accusations of drunkenness or faking a disability, further marginalising those affected by it. It is imperative to educate the public about what the disease entails and the challenges faced by individuals living with this condition.
In South Africa, the treatment of Parkinson's disease is predominantly one-dimensional, relying heavily on pharmacological treatment. Though there have been substantial advancements in multidisciplinary support approaches, such as physiotherapy, occupational therapy, speech therapy, nutrition, and lifestyle management, these therapies are not extensively endorsed by the medical profession.
Consequently, they are not commonly included in treatment plans covered by medical aids. This exclusion limits the comprehensive care that could greatly benefit those living with the disease.
Additionally, the standard medical approach in South Africa is often inadequate.
A brief 15-minute appointment with a neurologist, costing upwards of R1,000 for those that are medically insured, typically does not provide patients with essential guidance or resources about their new diagnosis. Many individuals are left to navigate their condition alone, often turning to the internet for information, which can be a daunting and misleading journey.
Support for people with Parkinson's in South Africa is severely lacking.
Michael J Fox, a global ambassador the disease, once famously said “the expert in Parkinson's disease is the person with Parkinson's disease”.
Support groups play a significant role in this context. Yet such groups in South Africa are scarce, leaving many individuals to live insular and lonely lives. The absence of a robust support network worsens the emotional and psychological burden of living with the disease.
The establishment of Parkinson's Disease South Africa NPC (Parkinson’s ZA) as a patient advocacy group in August 2022 seeks to support, educate and advocate for diagnosed individuals as well as their families and caregivers.
It has partnered with the Parkinson’s Disease and Movement Disorder Society of India to implement their “Multidisciplinary Model of Care” programme in South Africa.
This evidence-based programme, active in India since 2001 across 60 centres, aims to educate and rehabilitate individuals with Parkinson's disease and their caregivers, and to train allied health professionals. Delivered weekly for free since August 2022 in Durban and launched in Cape Town on April 23, the programme is set to expand to Johannesburg later this year.
It is imperative that during Parkinson's Awareness Month, we shine a light on the lack of support for people impacted by Parkinson's and advocate for change.
We must push for updated treatment options, comprehensive care plans and increased support networks. By raising awareness and educating the public, we can work towards destigmatising Parkinson's disease, ensuring that those affected are treated with the compassion and respect they deserve.
With collective action and commitment, we can improve the lives of countless individuals who are suffering in silence. Let us use Parkinson's Awareness Month as a catalyst for change, fostering a more inclusive, understanding and supportive society for all.
For more information on our workshop please contact us on hello@parkinsonsza.org or www.parkinsonsza.org.
• Rakesh Harribhai is the founding director of Parkinsons ZA
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