Somerset West resident Heinie Pretorius, partook in the Cape Town Cyle Tour short route (42km) on Sunday March 10, but what makes his participation remarkable is that Heinie was diagnosed with Early-onset Parkinson’s Disease (EOPD), but completed this bike race for a second year in a row, this year even impressively improving his finishing time by 29 minutes.
Diagnosed in 2019 at the unexpected age of 49, Heinie now aged 54, refuses to allow this diagnosis to stop him from living life to the fullest.
He says he was encouraged to take part in the Cape Town Cycle Tour by his Biokineticist, Hildi-Mari Steyn and Charl Marks. He started working wtih Hildi about two years ago.
“When Heinie initially started seeing us it was specifically for Parkinson’s related rehab, and he worked with one of my colleagues for two years and then was handed over to me when I started working there,” says Hildi.
“It just so happens that at that point he started cycling and I am a cyclist, so I really tried to motivate the idea of him doing a bit more and I really like to inspire patients by giving them a goal to work for, which in his case was the cycle tour.”
Heinie has always had a love for cycling, but it was more a hobby until the suggestion to do the cycle tour came about. “They both encouraged me and said why don’t you do this. I thought it was daunting and something that I would never be able to do, especially because the furthest distance I had ever done on my bike was about 25km.” But he made a mind shift and soon convinced himself thinking, ‘I can do this’.
His training was intense …and included solo cycling sessions during the week and then he was joined by Hildi and other cyclists on the weekend.
Hildi says: “It was actually quite nice to train with him because it taught us how to accommodate him on the bike what we realised was that as soon as he stops or jumps off the bike it actually worsens his symptoms then his tremors increase and all of that.
“So we had to train how to cycle with him, hand him his water bottle, hand him his food, tablets; so that was something we had to get use to cycle alongside him and help him to navigate those things without having to get off the bike.
“Additionally, we looked at things such as the pace he was riding at and we noticed that when he does short intervals it also increased his symptoms, tremor and gets dystonia where he becomes very rigid in the upper body, so we had to teach him how to cycle at a more constant pace.
“So, he did quite a bit of cross-training which is optimal for an athlete, I see him as my athlete and not my patient, which is really just fun to work with,” she adds.
Heinie attributes this year’s improved performance to precise planning, excellent teamwork, and his team’s infectious morale.
“With Parkinson’s it often is a case of not having the confidence in your abilities and one needs to practice the little things, so I needed to get the confidence to know that I can do it (eating and drinking while cycling).
“I learnt a lot from Hildi and the team especially with regards to the technical aspects of cycling, things like how and when to use your gears during a race can make a big difference and I found that to be humbling and interesting to learn from them,” says Heinie.
During the actual race he says the expression ‘it takes a village’ most certainly rings true. “The main thing for me was that it was a group effort, that we all did it together” as he recalls how his teammates shielded and sheltered him during the route, ensured his energy levels were kept up, while at the same time monitoring and advising him.
“It was lovely having a whole team together to be there to support him and it was so fulfilling every time I see him go over the finish line it’s just so magical and I’m extremely proud of him,” adds Hildi.
He says working with a biokineticist has been beneficial and the tailor-made Parkinson’s specific training programme has made him by physically stronger, improved his balance, co-ordination, movement and overall quality of life.
“Every week we get a new set, and this makes going to the sessions invigorating as no week is the same. There’s always something new and exciting to do during the sessions,” he adds. An extra benefit is the positive impact the exercise has on his mental health.
Hildi adds: “He is a 54-year-old man but he is so young in spirit-he’s just always keen to have fun, we play music, and he dances, he doesn’t care what other people thinks of him, even though he has every right to feel self-conscious about having Parkinson’s especially at such a young age, he just really doesn’t care and that is so inspiring.
“He is just so much fun to work with in a sense that no matter his circumstances he remains positive, and he is keen to try anything new and I’m constantly challenging him with things that I sometimes can’t even do myself with co-ordination and balance and he is keen to try it. That has been really, special, and personally inspired me so much.”
Heinie remembers his diagnosis and says the earliest symptoms, he experienced prompting him to seek medical advice was a slight tremor in his hand and the fact that his left arm wouldn’t swing.
“I went to see my GP, and then I was referred to an internist and eventually went to see a neurologist,” he details.
The diagnosis came as a huge shock and brought with it an immense amount of fear, not only because of the early diagnosis, but also because his father, Keet, had also been diagnosed with PD, though at not such a young age as Heinie.
“You’ve seen what it can do to someone you love, so that was a bit scary,” he says. He says this is he did the first cycle tour in 2023 in memory of his father and to raise awareness that the Parkinson’s doesn’t have to stop you from living life to the fullest.
The disease has undeniably changed his life. He is on a strict medication schedule and currently he takes 14 tablets a day. Stiff muscles makes it take a while for him to get going, especially in the morning. Due to the impact of the disease on his work performance he went on early retirement last year.
People diagnosed with Parkinson’s can often struggle with feelings of anxiety, depression, or stress, but he has had to learn to manage these emotions when they come. “The more anxious you are, the worse your symptoms are, so it’s important to keep yourself calm.”
“At first (when receiving the diagnosis) it is a shock, and you feel a little bit depressed because you think it’s the end of your life, but then you realise that it’s your choice to decide what type of life you are going to live for the rest of your life,” he says.
Irrespective of Parkinson’s he is adamant to enjoy his life. “I decided that no matter how much time I have left, I am going to enjoy it and enjoy life while I can. And to take everyday as it is,” Heinie says.
One source of enjoyment is attending weekly Dance for Parkinson’s classes. Presented by Laurette Van Der Merwe, an experienced and qualified modern dance teacher and gymnastic coach, these classes have added a new dimension of light-hearted fun to his life.
Laurette says the classes recently started in February this year. “The goal is to help those diagnosed with Parkinson’s Disease and anyone else struggling with mobility, poor balance, strength and co-ordination or other issues and assist them through the medium of dance.” They currently have five participants and are inviting others to join in on the classes.
Heinie raves about these classes. “The classes are a lot of fun and we are more like a support group than a dance group. You always leave the classes with a smile and feel so positive and reinforced.”
The experience of participating in this year’s Cape Town Cycle Tour was an exhilarating activity says, Heinie. “There was an incredible vibe on the day and a wonderful spirit of camaraderie among cyclists.
“The thing that I noticed about this year is that I was not as tired as the last time and I felt a huge relief when it was over but, I was more relaxed and not as stressed; so, I could really take in the moment, and enjoy it.”
“My key message is that you can still enjoy life it doesn’t matter if you have Parkinson’s or any other chronic disease, you can still do the things you thought were not possible.” Another realisation the diagnosis has brought him is to not take anything for granted.
The support of his family and friends has been unwavering. His 14-year-old son, Emile has at both bike races waited for him at the finish line and they are now training together so Emile can ride with him next year. Another goal is to in future do the full cycle tour.
Heinie invites other people diagnosed with Parkinson’s to join the team. “I particularly hope other people with Parkinson’s will see and read about this and join our cycling team.” Reach out to Heinie by email at jfpret1970@gmail.com
To join the Dance for Parkinson’s classes hosted every Wednesday morning at 10am at the Somerset West Baptist Church Hall, Somerset West, contact Laurette on WhatsApp at 065 821 1203 or at laurettesphotography@gmail.com
