Rune's picture
Cycling for people with paralysis: how do we researchers and citizens contribute to more testing and usability of technologies like FES?

The Challenge: 

The Question: 

how do we researchers and citizens contribute to more testing and usability of technologies like FES?

The Problem: 

how can people with paralysis of the legs keep fit and move around in the environment

The Solution: 

This article aims to share information about an important, but little known option for people being paralyzed in the legs

Channels: 

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).

FES bicycle

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.

Comments

Can we get this story to your proximity in Italy?

Noemi's picture

Thanks @Rune, impressive how people find their way and maybe mobility doesn't have to be such an exclusionary issue after all.  I'd appreciate if you, your team and the WeMake team also share this with some of the people engaged so far in OpenCare, more minds put together will come up with super insights and helpful advice.. Let's do this.

Ping @Rossana Torri to help us reach to some key networks in the city. Thanks!

Can we go further about that?

Michel's picture

it's really amazing, nice job @Rune, in my country there is a lot of people who suffer from weakening leg muscle and poliomelite.  Those people are usually left aside and need someone's hand to move. On the other side, infrastructure and access to office, public area are not yet developed.

Thanks for sharing this @Rune

WinniePoncelet's picture

Thanks for sharing this @Rune. I cannot begin to imagine how good it must feel for someone with paralyzed legs to bike independently again. We have good biking infrastructure in my city/Belgium in general, but I rarely see handbikes actually. 

About where to try the FES bikes: are the bikes customized to the user? Or could you imagine a network of users who are up for letting others test their bike from time to time. On top of that people meet and connect, they are more involved and it's not a huge cost for anyone.

One issue reveals another

Rune's picture

Dear @Noemi. We are working hard on testing the Hybrid bike as a kickoff party together with WeMake (@Costantino, @Moushira) sharing with OpenCare, demonstrating feasibility of the WeHandU approach. As @Michel says, infrastructure is an issue especially in Italy. (what country are you in?). I know Belgiun like Holland is organized for soft mobility. You just have to fix some weather issues, where Milano has sun all in the plain but no consideration of planning safe infrastructure for cyclists, pedestrians etc.

@WinniePoncelet, it could be very good if you could elaborate on why you don’t have handbikers around because the berkelbike is dutch so It would be easy for people around you to get?

You have a good point,@WinniePoncelet,  we could imagine raising funds to have a FES bike that people could try locally.

I’ve learned two things recruiting wheelchair users as testdrivers

1. There is a perception that it may be physically harmful

2. People are afraid of traffic. There is a perception that there are nowhere to use the a Handbike

As for 1. it shows the importance of having clinicians who can evaluate physical aptness for this exercise weighted against the alternative (cardiovascular diseases, pressure sores etc.)

As for 2. We need a method of showing where it's possible to go safely, (Google maps in italy does not support cycling).  @Francesco Maria ZAVA and others we could work on this

The virtuous cycle of non-excluded people blazing the trail

Alberto's picture

Traffic is scary, for everyone. In my home region, Emilia-Romagna, we have a strong cycling tradition – it is unusually flat for Italy, and that helps. When I moved to Milano in 2001, I found cycling much more difficult because of a deadly combination of cobblestones, tram tracks and just sheer traffic nastyness. Bicycle lanes where almost absent. As a consequence, only "extreme cycling" happened: young, fit men who wore tactical backpacks, army boots and yelled at drivers, and even kicked at their cars. I could just about cope: my (Swedish) wife refused to cycle, saying it was too dangerous. Extreme bikers did things like this:

Man on a bicycle being dragged on by a bus.

But over the years those extreme people have become sort of cool. A company called Urban Bike Messengers established a bicycle-based delivery service. They cultivated an image of green, cool and a bit scary. Rumour was that, to become a messenger, you had to pass a near-impossible test of crossing the city only in minutes. This encouraged more people to go out and bike. This, in turn, made biking a little safer for everyone, because drivers learned to be a little more attentive. So even more people got out. By the time I left the city, the Decathlon shop in Cairoli was selling 50 to 100 bicycles a day. Eventually, the city council started to take cyclists a bit more seriously; traffic was restricted in the center, some slightly better bike lanes appeared. 

What this story has to teach is that, perhaps, if you want to make life better for paraplegics you have to start from the urban sport enthusiasts. Which is, after all, the same old story of finding a group of early adopters that pave the way (literally, in this case) for everyone else.

early adopters

Rune's picture

Yes @Alberto that's the key and why we do a FES cycling event. We also need marketing guys to promote and recruit (we have not been effective at that). Can you or others help out?

 

Wrong guy

Alberto's picture

I am no cyclist, and have left the country five years ago.  So no, I guess I am not the right person. ☺

Mapping

Rune's picture

Hi @Alberto, you are very right.. However I have been cycling around milano on tandem with a trailer (thats a long veicule) and two kids. I've learned that the trick is to know where to go and its a challenge (https://edgeryders.eu/en/can-we-hack-or-tweak-maps-to-help-where-infrastructure-fails-for-soft) we have to work on after our kick off event :http://wehandu.it/it/fesbici/

 

 

Successful event

Rune's picture

Despite a cold and rainy evening the FES cycling event was successful.  The test riders got carried away pedalling with FES activated legs. This was an open air event showing functional and fun use of scientific results. The imperession was that the BerkelBike was useful and we should work on making more readily available.

More information here:http://wehandu.it/it/eventi/

 

 

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