I WAS in high school when my father unexpectedly announced at the dining room table that he had Parkinson's, a condition affecting nearly 10 million people worldwide. It was an ordinary Sunday afternoon after church. At the time our family still had heated debates around that table, and we – and my father too – tried to dismiss the diagnosis with various clever arguments.
A year or two later, he was retrenched from work due to his medical condition. He was an electronic engineer. Young. Medically unfit. Could never find work again. At one point, he studied further and began a doctoral degree at North-West University in Potchefstroom.
Soon I discovered several of my friends' parents also had Parkinson's, though each case is unique and everyone's journey is different.
I spoke to Dr. Riaan van Coller, a neurologist in private practice also affiliated with the University of Pretoria's neurology department, and Lize de Klerk, who has recently lost her father to the disease.
Not enough dopamine
“The most important thing we know about Parkinson's disease is that one's brain does not produce enough dopamine," says Van Coller. “Dopamine is a neurotransmitter, which means nerve cells communicate with each other by sending dopamine around. So if you have too little dopamine, you actually move less."
Dopamine plays a crucial role in regulating body movement. A decline in levels causes involuntary tremors, muscle stiffness and a general slowdown of physical movement.
“You might move a bit slower or your movements might be a bit less wide, and as a result, you start trembling: that network in your brain gets disrupted. The process of losing dopamine is complex, so many things happen; there might be some inflammation, free radicals, or energy production problems. And ultimately, this leads to a cascade of events that results in insufficient dopamine."
Sitting with me at my dinner table, De Klerk remembers when her father was diagnosed, also in or around her matric year.
“His stride became much shorter and he started losing his balance – that was in the beginning. At the time, my mother was still alive, so I didn't attend his [medical] appointments and understood very little about it." Later she would become a full-time caregiver for her father and responsible for all his decisions.
“The tremor is what we most associate with Parkinson's, so when you think of someone with Parkinson's, you think of trembling, but not everyone trembles," Van Coller tells me. “About 50% of patients never tremble, they just move more slowly," as in both De Klerk's and my father's cases.
Van Coller elaborates on the causes: “The causes remain complex, most of them come down to a DNA risk: something in your DNA increases your chance of Parkinson's disease when you're in the right environment [for it]."
Pick your poison
“Toxic substances, especially those used in agriculture, are a significant problem. People directly exposed to these and with a genetic risk have a higher chance of developing Parkinson's. People who smoke get less Parkinson's, not because they die sooner, but because it somehow protects them. People who consume a lot of caffeine might also develop Parkinson's a bit later. We still don't fully understand that environmental interaction."
Currently, there is no cure for Parkinson's disease, but several treatments are available to help manage symptoms. Levodopa, a medication that increases dopamine levels in the brain, is commonly prescribed. Physio-, occupational and speech therapy are recommended while maintaining an active lifestyle is important.
The non-profit organisation Dance for Parkinson's South Africa in Pretoria is an effective way to encourage patients to stay active; in the class, physical challenges faced by Parkinson's patients are addressed – balance, walking, turning, expressing emotion, muscle stiffness, poor posture, tremors and getting stuck in a position.
Van Coller notes that it's often the only physical exercise his patients can manage and that it creates a wonderful support network where people get a chance to socialise.
The story begins with Julie Symmonds, the founding director who heard about the New York-based Dance for PD® programme in 2015 through a family member of one of her ballet students. It's also at this organisation that De Klerk's and my father would later meet.
Dance!
Marna Bolt, a teacher at Dance for Parkinson's, remembers that my mother and father were the first people to join in 2017 when it was still in an experimental phase.
“You know, I laughed so much. Your mom tricked your dad and said they were going to a Parkinson's conference. Your dad was furious when he found out he had to dance."
“Yes," I agree, “I was too scared to ask my dad to dance with me at my wedding."
“And you know," Bolt continues, “he sat down on a chair and watched the whole thing from a distance. When I looked up again, I noticed he was tapping his foot to the rhythm of the music, and the rest was history.
“Parkinson's ... causes problems with body movements," she says. “So the first reaction of people with Parkinson's is usually sceptical, because dance represents everything that's usually a problem – flexibility, balance, range of movement and the expression of emotions," Bolt tells me.
“With dance, people with Parkinson's are exposed to a new world – a world of movement and new possibilities they thought were impossible."
I experienced the same with my father and was amazed to see with what dedication they attended the weekly classes, and how they looked forward to socialising afterwards.
Was the verbal abuse due to the illness?
De Klerk's journey with her father was more complicated because she eventually became his full-time caregiver.
“After my mother passed away, my husband Gideon and I looked after him, and he moved in with us. I was 26. He stayed with us for three years. My father and I had never had an easy relationship. It was difficult to care for someone who had been so terrible to me and my mother, and whom I considered verbally abusive. It only struck me later that some of his aggression and impulsiveness could have been due to Parkinson's.
“My father didn't actually tremor much, but he had other symptoms like muscle stiffness, no bladder control and no balance. And then the less-known symptoms like poor impulse control increased risky behaviour and psychosis. I blamed him instead of climbing into the trenches with him. I felt like a mother with a rebellious teenager who was regularly called in by the head nurse when we eventually moved him to a care centre to address his manipulation, aggression and even criminal behaviour," De Klerk recalls.
“My entire identity was tied to being a caregiver. My mother was diagnosed with cancer and had various health problems. My father would often travel and leave me alone with my mother. When my mother and father had passed away, I no longer knew who I was. Sometimes I resented them for not being able to do the things other people in their twenties do. I wanted to travel and see the world, and then I married my high school sweetheart who understands what it feels like to lose a parent.
Losing one’s purpose in life
“I hated myself because I first saw myself as a victim until my neighbour told me we all have a burden in life to carry. And when my father passed away last year, I suddenly had no purpose. I was no longer a victim, but I was still depressed. I couldn't understand why I wasn't immediately pursuing my dreams, but I no longer knew what my dreams were. I blamed myself. After all, I thought I wasn't a feminist because I married so young, but having someone by my side who loved me unconditionally and supported me so much through this was the best thing that could have happened to me."
Van Coller emphasises: “It's important that caregivers get relief, if possible, and that one joins various support networks. Loss is the problem. You lose your ability to drive your car and the retirement you looked forward to. And the person taking care of you, like your life partner, also loses those things. And that's how resentment develops. The best way to support someone with Parkinson's is to have a positive outlook. If it's not your family member, make visits active and give the caregiver a break. Make sure the person with Parkinson's is sufficiently stimulated and has good social interactions."
There are various support networks in South Africa. Van Coller encourages people to consult movementdisorders.co.za or join the Parkinson's Association of South Africa (Parsa). The Alzheimer's & Dementia Support Group South Africa also supports Parkinson's patients, but it's important that the caregiver is supported by an outsider who can assess the situation.
De Klerk's advice to other caregivers is: “Get someone in your court who can help you with boundaries, because you'll always feel it's your father or mother, and you can't bring yourself to put them in a care unit. There were people along the way who supported me when we finally decided I could no longer care for my father. I didn't make that call. He was falling a lot and started hallucinating. My father needed more help than I could provide."
Tim du Plessis undergoes DBS
Former journalist Tim du Plessis is also a patient of Van Coller. He recently underwent deep brain stimulation (DBS). This surgical procedure is used to control certain symptoms of Parkinson's disease and other neurological disorders. It involves implanting a device that sends electrical impulses to specific areas of the brain to regulate abnormal nerve activity.
The small device, similar to a pacemaker, is placed in the chest wall under the skin. Thin wires connect it to electrodes which send electrical impulses through the brain. The impulses help suppress abnormal brain activity that causes symptoms when medication is no longer effective. The procedure can alleviate tremors, stiffness and slow movement, but is not a cure.
In a video interview with Rapport Du Plessis says: “I told my son Charl, realise this, for the first time in five years my left hand is not completely out of control."
Van Coller is very positive about DBS treatment to improve people's quality of life: “DBS is a very good treatment in the middle stage of the disease when dopamine pills no longer work well and their effect is too short or leads to excessive movement."
Although DBS mostly yields good results, it is not always successful. Some people do not experience the same level of improvement, and specialists need to regularly adjust the device to deliver the best results.
Life expectancy not always shorter
Last year, I started a BackaBuddy campaign for my father to raise money for treatment. Within two weeks, people from around the world had donated R130 000. It was incredible, and he was overwhelmed, after initially not wanting a campaign!
My father was a different person when he came out of theatre. He smiled from ear to ear. For two weeks, it seemed everything was going smoothly, but then his symptoms returned. Adjustments to his device are still made regularly, and Van Coller believes the treatment must just be given a chance to work effectively.
I think the community my father discovered through the BackaBuddy campaign made the biggest difference to his quality of life. He rediscovered old friends who had emigrated and met new people with whom he was still in contact. Suddenly, he no longer felt so isolated and alone.
“It's so easy for your doctor to just push pills for you, but you must insist on good care," Van Coller concludes our conversation. “The life expectancy of someone with Parkinson's is not necessarily shorter if you look at the statistics. People with Parkinson's ultimately die from other secondary problems, like a heart attack or pneumonia."
When I open the gate to let out De Klerk, who has just turned 34, I ask her about her travel plans and her and her husband's new dreams. “You know, I thought I would immediately start travelling when I get the opportunity, and then we started thinking, what about a baby?"
♦ VWB ♦
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