‘I’m living with Parkinson’s disease’

Johann Stoltz shares how his life changed after being diagnosed with the neurodegenerative disease.

14 September 2015
by Stefan de Clerk

In 2008, at the age of 30, former IT technician Johann Stoltz was officially diagnosed with young onset Parkinson’s Disease (PD), a degenerative condition that affects the body’s central nervous system. The impact on his life has been dramatic. Johann shares his story here...

It started off as a twitch…

Symptoms of Parkinson’s take a long time to show in younger patients, I first noticed something weird was going on in 1994 when I was in Standard 8 (Grade 10). Every now and again the pinkie on my left hand would grow stiff or twitch, but at first I thought nothing of it.

I was heavily involved in karate – and even went on to become the provincial and national champion in 1998 – so it didn’t seem abnormal to have odd symptoms in a sport like that. My doctor suspected that I had carpal tunnel syndrome, again very plausible given the rigours of my karate training.

However, things got progressively worse, and by 2007 my right foot started dragging when I walked, and by 2008 I was struggling to write. That year I was referred to a neurologist who diagnosed me with Parkinson’s.

Parkinson's disease treatment

While it is known that the motor symptoms of Parkinson’s are caused by the dying of brain cells that make dopamine (a neurotransmitter that sends signals to other nerve cells), it is still unclear what actually causes the disease. This means that doctors can only treat the symptoms.

Initially I was put on dopamine-boosting medication, but this turned out to be ineffective. I was then approved for deep brain stimulation (DBS) where electrodes are implanted in the brain to stimulate dopamine production. With DBS, the symptoms disappear almost completely for a number of years, but because it’s degenerative, the symptoms do eventually come back. I was put on antidepressants too to aid with the psychological symptoms of PD.

I also discovered that when I ride a bicycle my symptoms disappear completely and my voice returns to normal – it’s as if I don’t have Parkinson’s at all! This year I plan on completing the 94.7 Mountain Bike challenge in Johannesburg and am training hard.

The social challenges of Parkinson's disease

Besides the obvious challenges that come with my body’s increasing rigidity and stiffness, like tying shoelaces, which is now a great challenge, people’s opinions about my condition really get to me, especially in the beginning of my battle. People see you and think that just because you move oddly, that you’re an idiot – and they treat you as such. I’ll sit in a restaurant with my family and I can feel people staring at me like I’m an alien.

You realise just how little compassion people actually have. Coping with that and not letting it get to me is probably one of the biggest challenges I face.

My advice for staying strong

Staying strong mentally is very important when you have Parkinson’s. Don’t go into denial, and don’t let others’ opinions define you. I have Parkinson’s, it doesn’t have me. Also, remember Parkinson’s isn’t terminal: you die with it, not from it.

One of the most important pieces of advice I’ve ever received is: “Know your limitations, then defy them.” If you’re an active person, don’t stop doing your sport – it gives you something to focus on other than your condition.

Also, having supportive friends and family around you really helps you get through the tough times."

IMAGE CREDIT: 123rf.com