“It was incredibly traumatic but exciting at the same time. There was so much fear and emotion hanging in that moment. I wanted it to work so badly.”
Emma Lawton is 33, and one of the 2% of people with Parkinson’s who have been diagnosed with the neurological condition before they are 40. She is sitting in Microsoft’s office in London, describing the moment she first used the “Emma Watch” – a wrist-worn device that aims to significantly reduce the almost constant limb tremors associated with Parkinson’s.
Lawton, a creative director, was wearing the watch (top) when she put pen to paper for a recent BBC documentary called The Big Life Fix, which changed her life forever.
“I was petrified. What if it didn’t work? So when it did work, I thought ‘OK, that’s amazing’. I couldn’t really get my head around it. And then when it carried on working…”
At that moment Haiyan Zhang, who invented the watch as part of a research team, walks through the door and greets Lawton warmly before she has to sit for more photos.
“Haiyan is awesome,” Lawton says when Microsoft Research’s Innovation Director is out of earshot. “She got me instantly. The watch has an interchangeable strap; that’s so me, the fact that it can have different colours. She sussed that I wanted something that was cool, and that my boyfriend would be jealous of, because he’s all about technology. It didn’t look like it had come out of a Parkinson’s magazine for an old person. She got all that. And she was incredibly human about the process. I just thought: ‘Wow, this is someone who not only understands the technology behind things but also understands the humans behind things’.”
Zhang, whose day job involves inventing cutting-edge technology at Microsoft’s research centre in Cambridge, manages to break away from the photoshoot, makes herself a tea and swaps places with Lawton, whose turn it is in front of the camera.
It’s a rare opportunity to speak to Zhang (right), who has been in high demand since the BBC series aired in December.
“I’m trying to figure out a way to move this forward, because I’ve got hundreds of messages from people who want the device for themselves or their family members,” Zhang says, smiling and nodding, as though an overflowing inbox is a very positive thing. “That’s all the messages I get. I have close to 100 in my inbox, and then people contact me on Instagram, Twitter, on LinkedIn, on my blog, it’s just every whichway.”
It is unsurprising that the promising results from Lawton’s first experience with the watch have raised hopes among the wider Parkinson’s community. Around 127,000 people have the condition in the UK alone, and although doctors have accurately identified its symptoms – tremors, limb rigidity, slowness of movement, imbalance – little else is known. There is currently no cure for Parkinson’s and no ability to predict who will be affected; medication, which focuses on replacing dopamine in the body, has barely changed in decades and becomes less effective the longer it is taken. Brain surgery can help control movement symptoms but isn’t successful for everyone, and those who go under the knife will still need to take medication.
“Other diseases, such as Multiple Sclerosis, can be modified but Parkinson’s isn’t there yet. Drugs can treat the symptoms but they don’t change the disease,” says Sally Davenport, a Physiotherapist and Senior Teaching Fellow at University College London who is involved in neurophysiotherapy.
“We are looking for how to improve the quality of life, because at the moment Parkinson’s is incurable. It’s about living with it. If you have a condition, you always hope that a treatment will come along, and you need to stay healthy for when it does.”
While the wait for a cure continues, Zhang has created what she hopes could be a “revolutionary” aid for reducing tremors. The Emma Watch uses vibrating motors – similar to those found in mobile phones – to distract the brain into focusing on something other than trying to control the patient’s limbs. Put simply, Zhang believes Lawton’s brain is at war with itself – half is trying to move her hand, the other half is trying to stop it. The two signals battle and amplify each other, causing the tremors. The device stops that “feedback loop”.
“It’s all about listening to Emma describing her experience because that’s one of the only ways you can understand what’s happening with her physiologically, and then drawing insights from that,” Haiyan explains. “She said she could observe her hand tremoring but no longer felt the tremor because the vibrations [from the device] were coming in place of the physical sensation of the tremor.
“I think what happens with the device is … her brain no longer senses the hand tremoring and is no longer trying to do that loop of stopping the hand from tremoring. Since [the programme aired] I have spoken with neurology researchers on the subject and there is scientific basis for this line of thinking.”
The Emma Watch is just the latest example of Zhang’s desire to help people and improve lives, the roots of which stretch back to childhood.
She was born in China before migrating to Adelaide, Australia, with her parents at the age of eight. Despite her new world of “birthday presents, birthday parties, pass-the-parcel, afternoon suppers, knives and forks”, the switch was tough on Zhang. She was the only Asian child at her primary school and spoke very little English, which automatically made her an outsider, different, an “oddity”, as she puts it. Anti-Asian graffiti in her neighbourhood and people aggressively yelling at her from cars was common. Zhang retreated into herself and became shy and quiet.
However, there was one person who was determined to help Zhang overcome her obstacles and thrive. The youngster’s third grade teacher sat with her every afternoon, pointing to pictures and helping her sound out the words. “Having that direct impact on someone’s life ripples into bigger societal changes,” Zhang recalls more than a quarter of a century later.
Degrees in computer science, interactive multimedia and interactive design followed before she became a teaching assistant at Monash University in Melbourne. She then took a year-long job as a software engineer at Space-Time Research in the same city before moving to Canada to join the biomedical industry in 2000. Later, she accepted roles at the British Design Council and innovation firm IDEO, also consulting for Stanford University and the Copenhagen Institute of Interaction Design.
Before the 39-year-old joined Microsoft in 2013, she was on the founding team for the innovation platform OpenIDEO.com, where she also led its design team. The firm enabled people across the world to share ideas and solve challenges for social good, and has been embraced by companies and institutions such as British Airways, Deutsche Bank and Harvard Business School.
“We worked with Oxfam, who posted on our platform: ‘How might we improve maternal health with mobile technologies for low-income countries?’, while Amnesty International posted: ‘How can technology help people working to uphold human rights in the face of unlawful dention?’. Anyone could log on and help solve these challenges, and you could work together on the platform. I’m really proud of the work I did on that, because it brings together the things I’m really interested in: solving big, real-world problems, helping people, and empowering others to solve those problems.
“We saw people who were not even in technology come to use the platform. A policeman in Brazil would log on and do this at night. It provided him with skills, in case he wanted to move into a different career. I was very passionate about these kinds of challenges for social good. I’ve always had this underlying interest in big, real-world problems.”
After seven years at IDEO, Zhang joined Microsoft’s Lift London studio, where she developed technology products across the toys, games, wearables, retail and travel sectors. In March 2015, she became Innovation Director at Microsoft Research, Cambridge – one of a series of labs Microsoft runs across the world focusing on technological innovation – starting up a team called Connected Play.
“At Microsoft, I’ve focused on play and gaming for kids and families to bring physical and digital gaming together,” Zhang, obviously passionate about her field of work, points out. “There is a huge opportunity for technology to come in and really help, and do something new in these chronic illnesses that have been around for a long time.”
In many ways, Zhang found a second home at the Cambridge lab, which tries to hire the world’s brightest minds and then gives them the freedom to “think outside the box” and take risks with their work. Only by actively following these ideals can the lab push the boundaries of technology and science to help people, according to its director, Chris Bishop.
“If we are to make products and services that empower people, we need to have people like Haiyan with highly enquiring minds and the engineering skills to find out what people need and build technology that suits them,” Bishop, a world-renowned artificial intelligence computer scientist, tells me later that day.
“We have incredibly talented people here and a very supportive environment. We also encourage free exploration of ideas and risk-taking, as this is what makes for good research outcomes.
“We hire people with a wide range of backgrounds and skills – diversity in our teams is something we strive for. Here at Cambridge we have a team of designers, social scientists, engineers and psychologists who are experts in how people interact with technology. It makes sense that we have these skills included on any team that is working on technology that will one day have contact with a customer. We value highly creative minds as part of a team so that we can encourage totally different approaches to a problem and how to bring the solution to fruition.”
The theme of collaboration crops up regularly during my chat with Zhang; she highlights that Emma’s Watch was a team effort. In fact, her presence on The Big Life Fix only came about because a friend thought that her personality and skills would be a good fit for the show. Jude Pullen, an award-winning design engineer who headed up research and development at London start-up Sugru, recommended Zhang to the producers.
“We went in and we really weren’t sure what was going to come out of it; we weren’t quite sure what the show was going to look like. But the BBC commissioned it and we started filming in December 2015,” Zhang says.
The Big Life Fix was comprised of three episodes, each featuring different members of the public who were experiencing life-limiting circumstances and needed a solution. Episode one starred Zhang and Lawton, as well as a photographer who could no longer use his hands to operate a camera (this was Pullen’s challenge). Zhang also appears in episode three, helping a family whose two sons have Cystic Fibrosis.
She was one of seven experts – three women and four men – who were given the challenge of changing people’s lives.
“It was really a side project that I was doing in my spare time,” Zhang says, before adding that she was on maternity leave, too.
She pauses for a long time.
“I felt very guilty about that. My baby was three months old and I had to go to Cornwall. I had to get on the train at 7am, go to Cornwall, we would film, then I would get in a van at 6pm and drive back to London for midnight, so I could be back home.”
Those long days filled with work and travel that kept her away from her newborn daughter were tough for Zhang.
“I don’t know how I did it. I had a lot of help from colleagues, and I would try to do weekends. So I would go to Cambridge on a Saturday and spend the whole day hacking stuff together. My mum was here for six months, too, which helped a lot. She lives in Australia.”
One of those colleagues was Nicolas Villar, a researcher at the Cambridge lab who specialises in connected play and improving the experience of interacting with technology. Surprised and intrigued that aids for Parkinson’s tremors were still theoretical, he worked with Zhang off-camera to develop the Emma Watch.
“I met Emma and she had lots of ideas that she wanted to try – pens that would dampen vibrations, mechanical constructions,” Villar says. “We brainstormed other things that I could help with and one of the things she was interested in was vibrations on the wrist. I helped them put together a test rig with lots of wires and connected to a computer.
“It looked promising but for someone to really see if it works they need to live with it and try it as part of their daily life and routine, especially as Emma said her tremors would change throughout the day.”
Before the watch was created, Lawton had tried to work around her Parkinson’s symptoms, which were erratic to say the least: “Parkinson’s is so weird, one moment you can be all over the place, quivering, and the next minute you can be fine.”
She would use her left hand, or draw with oversized pens and paper in the office because “if you do things big enough, the tremor is minimal”. However, Lawton quickly realised that this “solution” wasn’t practical. She had started looking at alternative careers but was resisting the move because drawing “is the way I am; it’s always been what I have done”.
At home, in East London, it was a similar story. But Lawton discovered that she had a small amount of time in the middle of the night where she had no tremor at all. So, she would get out of bed and get ready for work before the symptoms started again.
“If I wake up at 5am, those first five minutes after I first wake up, I have no tremor. It’s bizarre. I do my eyeliner and paint my nails at five in the morning. I did my Christmas cards at five in the morning, too. My boyfriend woke up and said: ‘What are you doing? You’re crazy!’ But that’s not a sustainable thing, it’s not practical. I can’t do all my work at that time of night. I wasn’t in any way fixing it.”
Then came the moment Lawton had been hoping for since her diagnosis at 29, three years earlier. More than a million people across the UK watched their televisions as Zhang and Simon Reeve, the show’s presenter, sat Lawton down on a sofa and handed her a small, black box. Inside it was the watch.
Lawton admits she was “frightened” the device wouldn’t work – not because of Zhang’s work but because Parkinson’s is so unpredictable – and she would feel as if she had let Zhang down. But all that fear vanished when her pen touched the paper and she wrote a perfect, single word: Emma.
Then she burst into tears of happiness.
“It’s a bit of a modern-day miracle – someone not being able to write and draw and then being able to do it again,” Lawton says. “And the watch continues to work. It fills me with joy that it wasn’t just a one-off, a fluke. I get foot cramps, so I’m going to try wearing it around the house on my ankle and see whether that helps. You never know.
“For now, it has given me control of my career back, and I’m the one who decides how long I want to be a designer for. I don’t think Haiyan realises how much she has done for me.”
Everyone involved in the watch is keen on developing it for a wider market, but that’s a long road full of trials, data and research papers. It could be many years before a viable product for those with Parkinson’s even emerges from a lab, let alone finds its way to companies who can distribute it and then onto the wrists of those who need it.
While, at least for now, the technological advancement of the watch may have slowed down, Zhang certainly hasn’t. As if creating one potentially life-changing device wasn’t enough, in episode three of The Big Life Fix she came up with an aid for people with Cystic Fibrosis (CF).
Vicky Coxhead is a mother of four, two of whom have CF. Zhang, now a mum herself, quickly realised that she needed to create a solution that not only helped 16-year-old Aiden and 13-year-old Morgan cope with their condition, but also Vicky, too.
“[Becoming a mother has] definitely helped me relate better to Vicky and her situation. I understand what she’s going through. I was saying as we were doing this project that we needed to make a fix for the boys but we really wanted to make a fix for Vicky, too, because she’s the one holding the whole family together,” Zhang says.
CF is an inherited condition that causes the lungs and digestive system to become clogged with mucus, causing breathing problems and other medical issues, and raises the risk of infection. More than 10,800 people in the UK have CF, and must spend hours undergoing physiotherapy and taking nebulised treatments and pills each day.
Vicky wakes up at dawn, when she starts the first of six sterilisation procedures that day to ensure her sons’ CF equipment is safe for them to use. When that’s finished, it’s time for the nebuliser, medication and physio – a tedious 30-minute breathing regime using an acapella that loosens the mucus so it’s easier to cough up, which must be completed three times every day by each boy.
It’s this last stage that’s the hardest for Vicky and her sons, one of whom suffers from Attention Deficit Hyperactivity Disorder and the other from autism, and where Zhang focused her efforts. After spending time with the family and visiting their home in Cornwall, Zhang quickly realised she shared a passion for gaming with Aiden and Morgan, and wondered if she could use that to help them improve their health – as well as give “exhausted” Vicky a break.
“Haiyan connected with the kids straight away,” Vicky says. “They were amazed that she knew how to work an Xbox. Morgan knows games inside out and was completely gobsmacked by her ideas. I just needed it to be fun for the kids, I wanted them to achieve something. But Haiyan was desperate to create something that would help me, too.”
Zhang’s solution was to use a digital pressure sensor to turn the boys’ acapella into a controller for a video game or real-life car racing set – the longer they blew into it, the further the game’s character or car moved. Working with design engineer Greg Saul, they prototyped and manufactured a custom set of electronics, along with 3D-printed plastic adaptors for existing CF devices.
But to create even a simple game Zhang knew she would need help, so she set up a two-day hackathon in which designers and programmers would volunteer to create betas. The result was a prototype, several games and “the most interesting thing to happen in airway clearance for a long time”, according to CF physiotherapy expert Professor Eleanor Main.
Zhang also created an online dashboard for Vicky that shows the progress her sons are making with their physiotherapy and exercise regimes.
“My approach was to empower other people to help create this bigger solution, because I saw that the fix was about this bigger system: there had to be a device, there needed to be multiple games and there needed to be a cloud service where the data could be uploaded and you could monitor it over time. I built aspects of that but I couldn’t build all of it. So the fix was really about setting up a cause or movement to get people involved.”
If Zhang needed a reminder of how important her mission was, she had to hand the finished product to the Coxheads in a hospital. Morgan had developed an infection and needed professional treatment. Despite lying a hospital bed, his immediate medical issues were soon forgotten when Zhang handed him the digital acapella and a tablet. Both boys loved her solution.
“It’s going to change our lives,” Vicky said. “We have had no fights to do physio. Morgan is taking responsibility for it himself, so he will go and get it without being asked. It’s something he wants to do because it’s fun, and I couldn’t have asked for more than that.”
But Zhang is already thinking of the bigger picture and the next step in the acapella’s evolution.
“I think the real winner is someone taking this forward and doing the next version of the electronics and the prototypes and making it available to more families,” she says.
Zhang flashes another positive smile and a nod, before adding: “I’m so happy to see these boys so happy.” And true to form, she rushes off to her next meeting, where she will try to help someone else.