The other day cycling home, I saw a person, probably living with spinal cord injury using his hands to pedal, a really rare sight in Italy. I’m a keen cyclist for transport and leisure, but my profession is also research in devices enhancing the mobility for people with physical limitations. Therefore I feel an obligation to spread the news about recent advancements in cycling for physically challenged. Have you heard about FES cycling?
FES - short for functional electrical stimulation - can be used to activate paralyzed muscles by impulses imitating the nervous system in the most natural way possible. We have come a long way with our research and it is possible to use this technique to let people with paralyzed legs cycle again. For some reason there are very few people who know about this so I’d like to share this knowledge with you.
We cycle to move, but also to maintain fit. It can be both fun and functional. But, if your legs don’t obey you anymore, you will probably not consider it a possibility. Paralyzed legs can result from an accident breaking your back, a stroke or a sneaking disease like the multiple sclerosis.
People caring for and curing you need to be very pragmatic, and you with them. Mobility then becomes reduced to passive transport, a dietetic approach to avoiding getting fat and medication of pressure sores and other side effects from lack of physical exercise. That’s where the publicly unknown FES research comes into play. Years of clinical research have consolidated the benefits, but we need to spread the news and understand more about it. Some people may already have heard of handbikes. They allow you to cover greater distances than manual wheelchairs. They are special tricycles where you use the hands for pedaling.
FES, on the other side, is applied via adhesive electrodes or incorporated in bicycle shorts. The stimulus activates the muscles of the buttocks and thighs in sync with the ride. However only the leg muscles can challenge the cardiovascular system to get physically fit. Some people with for example spinal cord injury (paraplegia) may be able to use FES for activating these large muscles. With FES cycling they can cover greater distances with greater speed and due to activation of large muscles they get (bene-)fit and feel physical well-being. The research community has tried to promote a more widespread use of FES cycling by arranging races (see here) and publications with the user’s statements of the pros and cons (see here).
How can we build research into practice or at least make options much more accessible?
The question is how to help people who have become paraplegic or their families know about the existence of such possibilities. FES bikes are quite expensive so where to go to try them? Many places and cycle lanes are missing so it requires some changes to infrastructure as well. But as long as nobody uses them it’s a vicious circle. Therefore we need more awareness to reduce cost, change infrastructure and increase inclusion in the cycle community
Even handbikes which are more popular can’t be bought in a normal bicycle shop, but rather directly from a few specialized companies. The lack of marketing incurs high costs to manufacturers and hence to clients.
My own group’s response as research and practitioners is to create a culture to promote this change, a project in the making. How can we promote actual experience based dialogue between users (who are maybe hackers) and researchers? There is an international community of researchers, so there should be a good chance of of finding local experts. As someone with a disability, you could connect with them and hack - evolve - test collaboratively cheap functional solutions in a healthcare hacking space. Dr Fitzwater, who is both a researcher and FES cycler, reports on the need to make benefits enjoyable in addition to positive medical outcomes: “The FESC function should be capable of being used on the open road with or without friends and family and be easily usable without any more assistance than that already required for the activities of daily living”.
Why should you, me or anyone care about the future of research? you want to see your tax money spent well, don’t you? And most importantly, this could be you or a relative who would like to go for a ride and have drastically limited options. Check out the coming cybathlon for more information and help us spread the news.
The production of this article was supported by Op3n Fellowships - an ongoing program for community contributors during May - November 2016.