The journey of an ALS cyclist

Community Stories

Author(s): Nadia Paraskevoudi, Neil M. Thomas, Kai Dierkes

June 15, 2023

Gary Godfrey on the day of the Bo Bikes Bama charity ride.

Pedaling for a purpose with Gary Godfrey

In April 2023, Gary Godfrey, a cyclist with Amyotrophic Lateral Sclerosis (ALS), participated in the Bo Bikes Bama charity ride. He rode on a custom-engineered bike using Pupil Core to communicate.

Join us on this journey to learn more about ALS, the remarkable efforts undertaken behind the scenes to facilitate Gary’s participation, and the inspiring role Gary plays in raising awareness about ALS.

Figure 1. Gary Godfrey on the day of the Bo Bikes Bama charity ride.

A keen sports person and cyclist

Gary Godfrey, an Auburn University alumnus and former basketball player (Gary played with Charles Barkley!), was diagnosed with ALS in 2019. ALS is a neurodegenerative disease that affects the nerve cells in the brain and spinal cord that control muscle movement. ALS patients lose the ability to move their muscles, which can lead to paralysis. Currently, there is no cure for ALS, and the cause of the disease is not yet fully understood.

Before Gary was diagnosed with ALS, he and his friends enjoyed cycling and participating in charity rides. However, a deterioration of his muscles and nerves caused by ALS stopped this. Subsequently, Gary and his wife, Carol, approached Auburn University Engineering with a brilliant idea in mind: to develop a bike that would enable him to continue participating in cycle charity rides despite his condition. Two engineering professors, Kyle Schulze and Jordan Roberts, were more than happy to take on the challenge of building him a bike, and this is how the idea of the “adaptive bike” was born.

Building the ‘Adaptive Bike’

Hampton Key, a mechanical engineering student at Auburn University, began his work on developing a bike for Gary as part of his Senior Design Project. Collaborating with a team of Auburn Engineering students including Grady Hall, Chandler Leopard, Conor Henderson, and James Clem, along with the guidance of their technical advisor, Sean O’Connor, they successfully redesigned an existing bike tailored specifically for Gary. Taking into consideration the limitations of previous attempts, the team lowered the weight of the frame, added suspension, and made the ride smoother. They also got him an adjustable seat so he could recline like he would in a chair at home or his wheelchair. The team worked hard to make sure Gary could participate comfortably and safely on charity rides, and in April, Gary took part in the Bo Bikes Bama charity ride.

“I didn’t know much about ALS - and that’s kind of the problem with ALS; people don’t know a whole lot about it.” - Hampton Key

Figure 2. The Adaptive Bike. Left: Gary in his bike surrounded by friends from the Auburn University community. Right: The Auburn Engineering students next to the Adaptive Bike.

Pupil Core eye tracking technology in Gary’s ride

The main challenge was communicating with Gary during the ride. In previous events, the strategy was to ride up beside him, and he could twitch his cheek or move his eyes to communicate (that is his only movement). For example, you would ask him a question, and if he twitched his cheek, that meant yes. If he looked away from you, that meant no. However, this year the team decided to upgrade the communication strategy.

Gary’s brother, Bill Godfrey, was also involved in the project, and he encouraged Hampton to look at Pupil Core. Hampton and his team contacted Pupil Labs expressing their interest in communicating with Gary during the charity ride through his eye movements. Pupil Labs provided a Pupil Core system to contribute to their project. The team connected the headset to a tablet-style laptop inserted in a container that was placed on the back of the bike. This setup allowed the team to observe Gary’s eye movements.

Meanwhile, Bill contributed to the project by developing software that would translate Gary’s eye movements into audible messages depending on gaze direction. The software was built with Unity and used the Pupil Labs API. For example, looking down triggered a “pitstop” message, indicating that he wanted to stop.

Figure 3. Gary with the Pupil Core headset getting ready for the charity ride.

This audio message was sent to the bike’s driver and Gary’s wife, Carol, through AirPods, who would hear the gaze-dependent audio messages and communicate with Gary during the ride. The team reported that the Pupil Core headset gave Gary’s wife peace of mind and allowed for quick communication, as she did not have to rely anymore on someone asking Gary whether he was okay every five minutes.

“Once calibrated, the solution worked quite well – giving Gary a reliable and easy method to communicate.” - Bill Godfrey

Figure 4. Gary in the preparation area before the charity ride. Left: The software built for Gary to send audible messages based on his eye movements. Right: Gary and the Auburn Engineering students.

Enhancing accessibility: The need for calibration-free eye tracking

The need for eye tracking devices that do not require calibration is highlighted by Gary’s experience. We took the chance to consult Bill Godfrey, who has experience in assistive eye tracking, to gather his insights on the calibration process for different eye tracking devices and its influence on the appeal of assistive technology projects. We also asked for his expectations regarding the potential impact of calibration-free eye tracking on assistive technology initiatives. His reply was straightforward:

"A calibration-free eye tracking solution would be extremely significant to assistive device use. Allow me to provide an illustrative example:

Gary needs to be moved (e.g., from chair to bed) at the end of the evening. There’s a problem during the move (e.g., Gary sees something wrong, feels something wrong, is getting hurt, etc.). Care givers must watch his facial expression throughout the move to recognize something’s wrong. Once Gary’s expression of trouble is recognized, then it’s all stop and try to figure out the problem. This usually involves bringing out the spell board and having Gary use an eye expression (wink) to slowly spell the word one letter at a time.

Imagine Gary could be wearing glasses during the move and could easily signal “Stop” or “Wait” or “Ouch!” And then, use the glasses to communicate the problem. Or, Gary’s caregivers could quickly put glasses on Gary that he could immediately use without calibration. That would be the holy grail in my mind." - Bill Godfrey

Undoubtedly, eye trackers that do not require calibration, like Pupil Lab’s most recent eye tracker, Neon, will be a game-changer for individuals with disabilities, enabling them to communicate more effectively and participate more fully in a wide range of everyday activities.

Support Gary’s ALS awareness campaign

In conclusion, Gary’s participation in the Bo Bikes Bama charity ride was an inspiring example of how people can overcome challenges and raise awareness for vital causes. The team’s efforts to assist him during the charity ride using Pupil Labs’ eye tracking technology and a redesigned bike were admirable. Gary’s mission to raise awareness for ALS research and funding will continue to inspire others to work towards finding a cure for this devastating disease.

We are genuinely honoured to have learned about Gary’s journey and to have contributed to his noble mission of spreading ALS awareness. We would like to conclude this article by sharing Gary’s message:

“ALS is not uncurable, it is just underfunded.” - Gary Godfrey

If you would like to help Gary and Carol find a cure, please consider making a donation.