Learning to live with Parkinson’s

Eckhard Kemmerer sat down with Brad Kelly to talk about living with Parkinson’s disease, innovation in the disability sector and the decision to put down the family cat.

The first thing you should know about Eckhard Kemmerer is that he’s not fighting Parkinson’s disease. He’s living with it. In fact, he has little patience for the image of the lone hero battling a disease.

“My world view doesn’t have a God or heroes in it,” Eckhard tells me. “It is just an endless search for something that will work.”

After all, “humans are tool makers”, he is fond of saying. “We’ve have always figured out a way to solve problems and there’s no reason Parkinson’s should be any different.” 

That doesn’t mean Eckhard is waiting around for a cure. He concedes that he will probably not see Parkinson’s cured in his lifetime, anyway.

He’s too focused on living and trying to fashion the tools to help him work, rest and play more effectively now. He tinkers with what is there; testing this, trying that, adapting this, combining that and figuring out what works and adding to his tool bag for living with

It’s not that he’s resigned to the disease either. Nor is Eckhard particularly philosophical about it. It is what it is.

“We all have a land mine that we only find out about when we step on it,” he says slowly. “Parkinson’s just happens to be mine.”

He’s curious more than anything. His diagnosis has opened him up to the wonders of the capacity of the brain and body for living with the disease and easing its symptoms. Mostly, he wants to share his tools and insights with the estimated 200,000 people living in Australia with Parkinson’s, and especially the 32 people per day in Australia that are diagnosed with the disease.

The second thing you should know about Eckhard is that he uses his smile like punctuation. It is warm and cheeky, a signal that he is about to shift direction. It’s a sign that he is ready to move on from talking about the gravity of his condition to pause and make a joke. Or to check in on his listener. He moves with ease between the subject matter.

For a man living with a condition that is slowly robbing him of his ability to communicate, he has remarkable control of his thoughts even if they take a little longer to come out these days.

When we talk on the phone and over zoom, he is at times slow and tired, but always funny, optimistic and generous. There is no ‘why me?’ stuff here. Even his humour is driven by his curiosity about the Parkinson’s that has been working its way through his body since he first noticed the symptoms in the mid-1990s.

Parkinson’s disease was discovered by James Parkinson in 1817, and it has been called the most complex disease in the world. Yet there is little agreement about the typical
progression of the disease, its nature and origins, and so far, there is no cure. There is little
certainty about the cluster of symptoms that will emerge in individual cases. Parkinson’s marches to the beat of its own drum.

“There is always something more to learn about Parkinson’s,” Eckhard informs me.

Eckhard has been on a steep learning curve. His initial cluster of symptoms, the progression of the disease and a series of watershed moments that have caused him to visit and revisit his understanding of Parkinson’s multiple times. As with any disease, some of these milestones and moments have been debilitating and downright depressing.

Like the twenty minutes it took him to walk the few metres from his bedroom to the kitchen in 2021, a reminder to him once again of the condition that was lurking in his body.

“It was one of those moments when Parkinson’s hits you,” Eckhard says in a rare moment of sadness.

The moment was a wake-up call. Eckhard had already been thinking deeply about the nature of disability as part of his role as Head of Product and Technology at Briometrix, an Australian company that measures the relationship between time and effort by collecting footpath data for a range of applications.

But this twenty-minute walk felt personal and accelerated his insights into the problem he was trying to solve at Briometrix

But more on that later.

Dr Google strikes out 

Up until that morning walk from the bedroom to the kitchen in 2021, Eckhard had already spent 25 years living with Parkinson’s. 

The first symptoms appeared in 1996; he was finally diagnosed in 2008 – 12 years later – without symptoms severe enough to commence treatment; in 2012 when he was put on the usual cocktail of drugs and in 2022, he underwent deep brain stimulation. 

That first symptom occurred while he was out on a run. 

“One day, I was jogging and I noticed a slight change in my run, a slapping of my right foot which wasn’t there previously,” he says. 

The GP initially blew off his concerns. “The doctor told me I was obsessing,” Eckhard says. 

But Eckhard was a life-long runner and like any runner, he knew his stride intimately. He suspected the doctor was wrong and he was right. “That turned out to be one of the earlier signs of the Parkinson’s,” he explains.

When he was finally diagnosed, he turned to Dr. Google to learn more about the disease; its nature, treatment and what he could expect as the disease progressed. What he found disappointed him and continues to do so. 

Google Parkinson’s and you come across the usual definitions. Uncontrollable shaking, stiffness, loss of balance and coordination, and finally, the loss of the ability to walk and talk. 

Think Michael J. Fox. Muhammad Ali. Billy Connolly. 

But for Eckhard, Google’s definition simply didn’t square with what he was feeling in his body. For one, he was a ‘stiff’ and not a ‘shaker.’ His Parkinson’s had started with a mix of depression, lack of sleep, constipation and the “huge turds that are illegal in some states in America,” he smiles.  

Those early pre-diagnosis years were disorientating. 

To get a sense of the impact of the profound changes that Parkinson’s visited upon him, Eckhard calls the turmoil that followed those early years his ‘lost decade’ where emotional, financial, relationship and business troubles engulfed him. 

After his diagnosis he began to think more deeply about what Parkinson’s is and what Parkinson’s is not. And unsurprisingly, Google’s algorithm led him on a wild goose chase. 

“Google prides itself on delivering old information that other people have read,” he says bluntly. “The history becomes the story and it is actually quite wrong.” 

“We have learned so much about the disease since I first noticed it in 1996, but you can’t Google it. Every single researcher just repeats the history of the disease,” he says. 

Eckhard rattles off a list of Parkinson’s symptoms that are less well-known. 

“Actually, Parkinson’s is an inflammatory disease,” Eckhard explains. “It starts off in the gut and in the nose. Once upon a time we couldn’t really find out what was living in the gut, because it was hard to emulate in the lab.” 

“It’s also a communication problem,” he says, jumping to another domain. “The words we use lead our minds down a certain path and a certain way of dealing with it.” 

“We don’t even properly identify and diagnose until the significant struggle shows up.” 

His frustration is evident: the lack of quality information, the failure to intervene early, the unreasonable treatment regimes. You get a sense that he does not want those who are newly diagnosed to fall into the same traps he did when he was first learning to live with the disease. 

He trails off into an explanation of biology and chemistry and the relationship between the two in the body before coming back. 

“There probably aren’t too many diseases that will affect as many parts of your body as Parkinson’s will,” he informs me. 

“It impacts every single part of your body except the earlobes,” he smiles. It was a joke that I didn’t quiet catch at the time. 

Thinking like a scientist

But what I did catch was Eckhard’s understanding of the holistic nature of the condition. Parkinson’s affects the whole system from the gut and airways to the nervous system and communication system and beyond. 

It is this whole way of thinking that he credits to his training as an agricultural scientist. In fact, to understand how Eckhard approaches Parkinson’s, you must first understand how he thinks. 

“Agricultural systems thinking really appealed to me. The whole concept of the interaction and interplay of geology, soil, climate, plant physiology and minerals, bugs and insects, and animal nutrition in growing a crop seemed really interesting,” Eckhard says. 

It is this system thinking, he says, that can easily be transferred to thinking about a disease like Parkinson’s that affects the whole body. 

“Simplify things at a systems level,” he says. “It is the whole that matters and how things fit and work together that matters. It rarely turns out to be some single factor answer.” 

By approaching Parkinson’s in a multi-layered way, Eckhard was able to pull together the seemingly unconnected threads of the disease and the complexities in understanding what is happening in the early days prior to diagnosis. 

For example, the onset of depression and the consequent treatment he received from the insurance company who stripped him of income protection, because many mental health issues are disqualified from cover. 

“That was silly. Depression is an early symptom of the disease and often appears way before diagnosis,” he says matter-of-factly. 

Or the slights on his character as either impulsive, apathetic or obsessive by those around him who had little understanding of what was happening as Parkinson’s established its grip – even as he was doing something routine like gardening. 

“At one point, I was focused on picking out the bindis from the lawn around my yard. Some of my neighbours wondered, ‘Why are you picking up bindis?’ All of a sudden as a Parkinson’s patient it’s called an obsession, but if you don’t do it, it’s called apathy,” he explains.  

You’re damned if you do and damned if you don’t. 

Then there were the cluster of other symptoms: sleeplessness, low mood, constipation, the increasing stiffness.  

It was this whole system thinking that came naturally and fuelled Eckhard’s curiosity. But in an attack out of left field, Parkinson’s would strike at his ability to think by robbing him of his ability to write. 

A bloody big pen 

Losing the ability to write, Eckhard says, was “absolutely profound” and, “the lowest point of my Parkinson’s.”

“Losing the ability to write was absolutely profound. It was the lowest point of my Parkinson’s”

“You lose your ability to plan, think, structure, argue. All kinds of things just go out the window,” he explains. “When we write, we can send a birthday and Christmas card, take notes in a meeting, and doodle while you are talking on the phone.” 

The biggest impact was at work. 

“When you can’t write, your memory is gone. You can’t remember the words you said or the commitments that you made. You start to appear forgetful, apathetic and non-committal,” he says. 

“When you lose your ability to write it has a huge impact. You lose your ability to think and remember,” he explains. “It really is quite dehumanising.” 

“So, I went on the hunt for a way to write, but there was nothing out there.” 

One day, out of sheer frustration, he exclaimed I need the biggest pen in the world!  

Eckhard takes up the story. 

“The grandchildren saw a novelty pencil in the newsagent and they brought it home. It was the length of a forearm and as thick as a broom handle. What I had said in jest had turned out to be the answer,” he says. 

“I picked it up and instantly, I could write. So, I started experimenting with big pens with thick handles and I came up with the idea of the counterweighted pen.” 

And so, one of Eckhard’s first tools was born.

Losing the ability to write was demoralising. But Eckhard’s invention of a counter-weighted pen, that was think and heavy gave him back the ability to write.

“Put a big pen in your hand and the momentum you get allows you to keep the line straighter. Instantly, you see on the paper how big the writing is. That was a big breakthrough for me,” he explains. 

“All of a sudden I could write again and I could think again,” he smiles. 

From guts to gambling 

Getting back his ability to write and think again allowed Eckhard to return to his exploration of the condition and search for more effective methods of treatment. The model of treatment had seemed to him unrealistic.  

“Basically, all of the treatments are all the old treatments,” Eckhard says. He is critical of the model that advocates for hours of practise per day on routine tasks such as teeth brushing, handwriting and walking. And while he values the work of his allied health professionals, he is dismayed at the expectations and homework exercises. 

“Who the fuck has the time to do any of that?” he asks, “How are you going to fit that around work and living?” 

“It doesn’t make sense to demand more exercises and so ultimately, it just doesn’t happen.” 

He is also sceptical of, “all the money is being invested in new chemicals that might treat Parkinson’s.” 

In the absence of a cure, Eckhard is focused on finding tools that work now, and not adopting some hope and pray strategy that a breakthrough will come in the next few years. He’s concerned with living with Parkinson’s now and he believes that thinking should lead efforts to help patients. 

“How can we help patients now?” he urges. 

Instead, Eckhard suggests that new patients become more aware of the multi-variable nature of the disease and work through each part at a time for symptom relief. 

It is a disease that stretches, he says, from ‘guts to gambling’. It penetrates every part of the body and has profound impacts on behaviour. 

One big reform he’d like to see is a much earlier patient intervention. 

“Too often, you get diagnosed and sent on your way until the Parkinson’s starts to have an impact on your daily life. An earlier treatment regime will make life easier for patients in the long term,” he explains. 

“Let’s get people aware of all the different body components such as the gut, smell, eyes, posture and head position. Everything leads to something else and they are all integrated.” 

“Once you gain control over a few areas, you get such a great relief from the symptoms that you can actually work and have a life again,” he explains. 

But while he recovered his ability to write and with it his thinking, it was a new operation that would have the most profound impact and arrest some of the severity of his symptoms.   

Deep brain stimulation 

In May 2022, Eckhard underwent deep brain stimulation (DBS), and while he admits to being “scared shitless,” what it gave him back post-operation far outweighed the anxiety leading into the surgery. 

Deep brain stimulation is a powerful new operation that involves inserting electrodes into the area of the brain that targets movement. A second procedure implants an impulse generator battery (called an IPG) in the abdomen or under the collar bone to deliver an electric stimulation to the electrodes. 

Think pacemaker and you’d be close. It works by interrupting the signals to the brain that cause the tremors or other movement issues. 

The operation had an immediate impact on Eckhard’s quality of life. 

“The DBS really took a load off my body. A huge burden was lifted,” he explains. “For the first time in a long time, I felt clean, still, quiet. It gave me back time and sleep.”

“Deep brain stimulation really took a load off my body. For the first time in a long time, I felt clean, still, quiet.”

What was the biggest impact? I ask. 

“I’m back running again,” he smiles. 

Of the estimated 10 million Parkinson’s sufferers worldwide, 600,000 have had the procedure. Eckhard hopes it will get funded by Medicare in Australia to offset the $180,000 price tag that makes the operation prohibitive for most people. 

Eckhard is one of the lucky ones. Although his symptoms are with him, he has enjoyed something of a ‘reset’, allowing him the energy and cognitive function to continue his search for tools to help him live and work with Parkinson’s. 

The new field of neuroplasticity had opened up, offering new insights into the ability of the brain to adapt and re-wire itself by forging new neural pathways through repetition and new experiences. Neuroplasticity had received a wide audience because of the popularity of Norman Doidge’s book The Brain that Changes Itself. 

The book opened up a new path of discovery for Eckhard. He was always an advocate of physical exercise and finding a good diet in managing his Parkinson’s. But what about other factors to do with recovering greater control over language for both acting in the world and thinking? What could neuroplasticity and language offer? 

Enter stand-up comedy and the tool known as changing channels. 

A stand-up comedian? 

Stand-up comedy might seem like a world away from agricultural science, marketing, wheelchairs and Parkinson’s – all professions not known for their laugh out loud observations. But stand-up comedy forced Eckhard to confront the two things that Parkinson’s disease was slowly robbing from him; timing and control.

Eckard embraced a sense of humour in the face of his diagnosis from the start.  

  “When I was first diagnosed with Parkinson’s, I started to make jokes about my condition,” he says. “I would make family and friends laugh when I stumbled or did something silly, and it became a very important tool for dealing with my disability.”

 More recently, his Briometrix business partner, Natalie Verdon, enrolled him in a stand-up comedy course run by Rob McHugh, a former writer on the Don Lane show.

 “I sat there for 10 weeks and thought about funny things,” he smiles. “In comedy you are searching for brevity and impact. I found that hunting for the funny side of things was very rewarding.” 

“Writing jokes is a process of getting down to the nub of your subject in the most concise and precise way. You end up with these bright insights and I think that is very helpful for both dealing with the disease and helping people better understand Parkinson’s,” he tells me.

“Writing jokes is a process of getting down to the nub of your subject in the most concise and precise way.”

“I also realised that comedy requires memory, timing and control,” he reflects. “The very things that Parkinson’s takes from you.”  

When open night mic came, Eckhard explored the absurdity of living with the disease. “I’m not a shaker, I’m a stiff with permanent body builder’s pose,” he told the audience with perfect timing and poise. 

He spoke about the misconceptions of Parkinson’s. “There’s a joke about spilling your beer – it’s not funny, but it’s true. There’s a joke about jerking off. It’s funny, but it’s not true because people with Parkinson’s have trouble gripping small objects.” 

Again, perfect timing met with laugh out loud guffaws. 

Enrolling in a stand-up comedy course gave Eckhard back the two things that Parkinson’s was trying to rob from him: timing and control of language.

But it was the treatment regime that generated the most giggles. The irony and absurdity of slowly unfolding the drug package warning insert (a challenge for anyone who loses fine motor skills with Parkinson’s) and reading the hilarious list of side effects to a befuddled crowd: shoplifting, excessive sex, and compulsive gambling. The punchline? “Where has Parkinson’s been all my life?”

Eckhard had graduated the course with punchline perfect proficiency.  

He had also stumbled upon the power of comedy for educating other people about disability. And in another subtle shift of thinking, he said that giving a laugh rather than getting a laugh had changed his approach to writing. 

Although Eckhard doesn’t consider himself a comedian, he told me he works hard on his jokes. It helps to observe the world that is changing around him as the disease progresses. 

He tells me the story of his dying cat with a healthy dose of dark humour.  

“A few years ago, there was a bit of debate in the family about when to put our suffering cat down. Finally, the end came when my wife was making a shopping list. ‘Well,’ she said, ‘We’ve run out of cat food and there is no use buying more. Now is the time,’ she declared.” 

 “I often think about that cat when my thoughts turn to my own mortality.” He stops, pauses for affect and says that he always checks his wife’s shopping bags when she returns from the supermarket. 

“After all, I’m the only one who eats muesli in the house,” a huge smile spreads across his face and he waits for the penny to drop. 

Comedy has given him so much. Timing, control, clarity of thought, brevity. “It made me take life less seriously,” he said. 

“I decided to use comedy as one of my tools,” he says. “Comedy is very important for dealing with disability and what life throws at you. Irony is the ultimate comedy. It was very profound.” 

“It’s funny the number of comedians who give up comedy when they get Parkinson’s,” he reflects. 

But the comedy course led Eckhard to a more penetrating insight about the power of language to help him deal with the mental distraction that is a common symptom among people living with the disease.   

Changing channels 

At the same time that comedy had given Eckhard a control of language that helped sharpen his thinking, focus his attention and find his words, he discovered a tool called ‘changing channels’ that he says, “had an almost immediate impact on the quality of my life.”

 A keen runner, Eckhard found almost instant relief in his symptoms by giving himself verbal cues to take his body out of autopilot to correct movement. 

 “As well as a neurological condition, Parkinson’s is also a communication problem,” he explains. “The words we use lead our minds down a certain path and a certain way of dealing with it.”

The first aha! moment came when he was introduced to the work of George Lakoff’s embodied cognition. Lakoff’s ideas appealed to Eckhard because they focused on the human body as a whole system and the ideas opened him up to the relationship between language and movement. 

Eckhard takes up the story about how he discovered verbal cues. 

“After I was diagnosed with Parkinson’s, I started looking for better ways to walk and I discovered that if I gave myself verbal cues, I could jolt my body out of auto-pilot to correct my posture or walk,” he explains. 

The thinking came partly from Lakoff and partly from the new neuroplasticity insights that offered the possibility of new neural pathways being formed to re-wire or divert pathways away from damaged brain tissue. 

“I started experimenting with my gait by dancing, boxing, running, and doing silly walks. I came to the conclusion that all of them are good –as long as you did something that was out of the ordinary and had to think about it, you could walk,” he says. 

“The number one lesson is that no matter what you do, as long as you do something different you will get there. Anything that got you out of that old routine,” he says. 

Eckhard calls the tool ‘changing channels.’ He says it is not just about intention. After all, you cannot crawl over broken glass to wellness simply by positive thinking. It is about doing something different. 

It is about thinking about taking longer strides and then following through by taking longer strides. It is about walking with your arms and being conscious of your arm movements when you are walking. Anything to get you out of autopilot. 

When I asked him about the impact of changing channels on easing his symptoms he responds without flinching. “It was immediate,” he said. 

But it was not just in walking and running that changing channels worked. Complex cognitive tasks at work or dealing with budgets at home were made easier with a verbal cue.

“If I get stuck, I send a strong thinking signal to myself that says “Stop looking here, the answer is somewhere else,” he explains. 

In one example, Eckhard used the same process to solve a tricky financial issue inside his self-managed super fund. 

But as with any tool, knowing when to use it and for what purpose is important. Sometimes, Eckhard says, a part of living with Parkinson’s is to let it have its way. He appeals to those who have a loved one with the condition to exercise patience. 

“I think sometimes you have to give way to Parkinson’s and if you leave the person alone, they finally get there. If you move too fast and throw them another problem too quickly, the distraction takes over,” he explains. 

Although changing channels is a way to regain some normality, it does not remove the reality of living with the disease.

Conversations are particularly challenging, Eckhard says, simply because they move so fast and the Parkinson’s patient has little time to respond. In another key moment, it was a fact he saw demonstrated clearly on a visit to the nursing home. 

“One of my watershed moments was a visit to mum in the nursing home and I’d take the time to talk to some of the other residents,” he explains. “Some of them had Parkinson’s.” 

“I could sense that many of them had this amazing, rich life inside, but they were sitting in the corner silent while the conversations move past them. Finding words is one of the biggest challenges for people with Parkinson’s,” he says. 

Eckhard is optimistic about changing channels as a hack for relieving the severity of symptoms. He describes it as so rapid and effective, “he can’t keep up.” 

Dealing with distraction 

Changing channels meets the challenge of one of the most insidious symptoms of Parkinson’s disease. That is, its ability to rob its sufferers of focus by a myriad of distractions. 

“Typically, we get a cue, and all of our senses fall into place and we act on it. It might be something as simple as driving a car or walking the dog,” Eckhard explains. 

“But Parkinson’s patients easily get distracted by smells, noise, sights or sounds. All the focus and effort go elsewhere at the expense of something else that you are supposed to be concentrating on,” he says. 

“Distraction is the new normal for people with Parkinson’s. It’s like the feeling of having something stuck in your shoe all the time.”

“Distraction is the new normal for people with Parkinson’s. It’s like the feeling of having something stuck in your shoe all the time.”

The problem is one of working memory or cognitive load. Parkinson’s patients have to use a lot of brain power to complete tasks that were previously done subconsciously and that can involve something as simple as having control over going to the bathroom. 

“We take for granted that so much of how we function biologically happens in the background, but in fact, it is a result of a deep coordination between all of our bodily functions,” Eckhard explains.

“Often, the first thing to go for Parkinson’s is the bladder and this can result in urinary urgency or incontinence,” he explains. 

“There is a real limit to how much the brain can process at the same time,” says Eckhard. “It can be exhausting.” 

Eckhard uses quick verbal cues to change channels and bring him back from distractions. He always asks, “How can I come back from the distraction?” 

There is a theme emerging in Eckhard’s search to live life with Parkinson’s. They are the tools that are available now. 

Whether that is changing channels to trick your brain into correct movement, joining a comedy course to improve control over language, inventing a pen to scribble down thoughts or thinking holistically about the disease, the key motif is now. 

But it was at the intersection of Eckhard’s personal journey with Parkinson’s and his professional work with Briometrix trying to improve accessibility for wheelchair users, that Eckhard stumbled on what may yet be one of his most important insights: the relationship between time and effort.  

Innovation, time and effort 

Eckhard is upbeat about the role innovation, technology and out of the box thinking can play in making the lives of those with a disability easier. 

“Right now, all the technology exists to make leaps and bounds forward, but sourcing the funding to make the connections and build the projects remains a frustration,” he explains. 

The sector is ripe for investment. 

“Innovation for disability is the new frontier,” he says hopefully. “There are so many tools to get ourselves going, motion sensors and balance sensing and so forth. Once you go down this path there are hundreds of opportunities to invent the things that will make life easier for people.”

“Innovation for disability is the new frontier. There are hundreds of opportunities that will make life easier for people.”

It is in our discussion of innovation that Eckhard lays out his first principles. 

“The measure of disability is effort and time,” he explains carefully. “If you look at the amount of effort it took for me to get from the bedroom to the kitchen, that is huge.” 

“It has a big impact on time. That effort took away the time I could have spent doing other daily activities.” 

And then the zinger. 

“Any innovation that reduces time and effort on disability allows us to do something else. Technology gives you back time in return for reduced effort.” 

His own disability has given him an insight into the formula. 

“There is enough disability to affect my life now than it was before. There comes a time when you can no longer do life the same way,” he explains. 

It’s an insight that Eckhard can feel in ways that inform his work at Briometrix. As Malcolm Gladwell writes in What the Dog Saw, we can all imagine what it would be like to face a serve by Roger Federer, but none of us truly knows how it feels. 

Empathy can only take you so far – and it’s a challenge that he and his colleagues have had in helping potential clients ‘get it.’    

“I wondered what that might mean for other people with disabilities. I went down a train of thought that led me to conclude that disability really requires effort to overcome,” he says. “The worse the disability, the bigger the effort.” 

“Effort is defined as the feeling of how hard you are working. To a physicist, effort is pure horsepower or kilowatt,” he carefully explains. 

To the layman it is a difficult, but important concept. 

“Effort is coming close to the limit of our abilities,” he says. 

Think of exertion at the gym. Many of us have the option to knock back the intensity of the treadmill, drop the weight or reduce the number reps. People with a disability lack those options and it is options that Eckhard is keen to give back as a gift. 

“Suddenly it hit me that the unifying thing behind all this is time,” he explained. 

“We all have the same amount of time and we divide it up to eat, sleep, groom, entertain and work. That is what makes life for most people. Suddenly you realise that if your bathing routine is now going to take 2 hours instead of 10 minutes, that is two hours gone.” 

“Over time, the time demands increase until it becomes apparent that you have so little time left,” Eckhard explains. 

Letting time and effort compound without attempting to arrest it can have a devastating impact on people with a disability, Eckhard explains. 

“At that point you now feel shut out of society and you don’t feel like you can make a contribution. When we cease to do that, we feel burdensome and then it starts to take a toll on mental health and self-perceptions,” he says.

Eckhard’s work with Briometrix measures the relationship between time and effort to give wheelchair users back the gift of ease and time.

“If time is the common denominator, you see the impact. Whenever you have enough time in your life to do something productive at work, or socially or artistically, you feel like you are contributing.” 

That’s where his work with Briometrix comes in. 

“Travelling to work allows you to dual task like reading a book or listening to music. Unless travel takes effort and you have to be constantly vigilant. We have some fundamental things we can deliver if we think in terms of effort and time. You can actually give the gift of time back to people with a disability,” he says. 

The toolmaker 

Yet for all his excitement about innovation and his work with Briometrix, Eckhard identifies as a toolmaker. 

“I want practical tools that work now. If you think about it, all technology revolves around a hammer, a lever and a wheel. Those are tools that you can adapt and use right now,” he says. 

He rattles off a list of available tools. 

“Writing and speaking are tools that you can use right now. Curating better information on Parkinson’s on the Internet is something that you can do right now,” he continues. 

“Changing channels is a tool you can use right now.” 

“We have exercise and diet as tools we can use now,” he says. “The Dutch have been the leaders in this and treated Parkinson’s as a whole.” 

He emphasises the now. 

It is this pragmatism that drives his search, not for better ways to fight Parkinson’s, but to live a fuller life with it and despite it. The key is, he says, to “adapt and try new things, and abandon others.” 

“Just try lots of things,” he says. 

As I come near the end of the interviews, I am struck by Eckhard’s unassuming intelligence, his flexible thinking and open mindedness, his ability to accurately express the experience of living with Parkinson’s and the impressive connections he has made between thinking, movement and broader issues around disability. 

I am also struck by his intention to focus on living now rather than waiting for a cure, the search for better treatments and the development of tools, and his reflections on the relationship between time and effort. 

But mostly, I have wondered if his rejection of the fight and the hero image holds up given his determination to cut a new path. He’s not exactly an iconoclast and defiance takes away valuable energy. Eckhard is no hero and he’s not about to pick a fight with Parkinson’s. 

Instead, what emerges is the portrait of a man who is persistent, curious and self-deprecating. He is not so much a hero, but an example of someone trying to balance the darkness and light of a disease which will increasingly define the shape of his life. 

He faces, not fights, his Parkinson’s with a generosity and a child-like faith that inspires new possibilities, treatments and out of the box thinking. 

But Eckhard’s faith is not in some higher power. It is simpler than that. It’s the belief that if he searches hard enough and does the small things well, he can make a contribution to people living with a disability to lighten their load a little more. 

He doesn’t ask for much in return. He only hopes that when his wife unpacks the shopping next week, there’ll be another bag of muesli.