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Epilepsy and cycling
nick205 - 16/9/16 at 11:51 AM

Hi All,

Not for everyone I'm sure, but as mentioned before I'm now epileptic and can't drive. I've always been a keen cyclist and would very much like to use cycling as a non-car way of travelling. I've always worn a cycle helmet and am now looking at full face helmets for added protection.

My question is can anyone suggest additional safety considerations or equipment to make road cycling safer for me?

Ideas I've had myself include hi-viz vests, bike lights etc, but maybe there are more that I haven't considered yet.

ravingfool - 16/9/16 at 12:32 PM



I'll show myself out!



[Edited on 16/9/16 by ravingfool]

907 - 16/9/16 at 12:37 PM

" but maybe there are more that I haven't considered yet."


Says it all.

gremlin1234 - 16/9/16 at 12:46 PM

you can get 'airbags' for motor cycles, and airbag vests as well
http://carandbiker.co/motorcycle-airbags-review/

jps - 16/9/16 at 12:46 PM

Nick - perhaps drop my mate Gideon a line - he has a blog here which doubtless has some contact details on it: http://www.ngomedia.org.uk/tumourist/ (if you can't get hold of him off that i'll pm you an email address for him)

Gideon is a keen cyclist - he started having some short term seizures which he thought were down to a trapped nerve in his jaw or something. Things got worse - both in terms of the seizures and the overall - as it transpired he has a brain tumour which is likely inoperable. However he's kept at cycling in varying ways - and I guess has thought about some of the practicalities that you are now.

I'm not sure if he's ever had a major seizure whilst riding - when I was riding with him they were more like partial paralysis of one arm over a short period (couple of minutes) and he had a sense they were coming - but I would guess he may have some good practical advice.

I hadn't wanted to mention Gideon before - because the 'it turned out to be a brain tumour' thing isn't something I wanted to mention (!!) but perhaps he can give some helpful pointers.

PS - have you seen this thing? http://www.hovding.com/

£219 on their website - but if it works could be very good for your situation?

jps - 16/9/16 at 12:50 PM

Good video for the Hovding here:

benchmark51 - 16/9/16 at 12:50 PM

quote:
Originally posted by ravingfool


I'll show myself out!



[Edited on 16/9/16 by ravingfool]


love it, ha ha. A dead cert for the noise test on track days too

Here you go, in true kit fashion

International Surrey bicycle / quadricycle,unfinished project, delivery possible

[Edited on 16/9/16 by benchmark51]

designer - 16/9/16 at 12:59 PM

I would have thought a tricycle would suit your situation.

B33fy - 16/9/16 at 04:40 PM

What about a recumbent bike, they look the nuts and you can get a lick on with them.

steve m - 16/9/16 at 04:50 PM

whenever I see a recumbent, I do wonder, why ? but also, I wouldn't mind having a go !

steve

adithorp - 16/9/16 at 08:23 PM

I've known 2 cyclists who started suffering from seizures. Both kept riding. Both ended up hospitalised with serious head injuries. Both were wearing helmets. One was lucky in that the accident didn't harm anybody else (though did involve others) but the other caused a quite serious accident injuring several other people.

Ninehigh - 16/9/16 at 10:54 PM

quote:
Originally posted by designer
I would have thought a tricycle would suit your situation.


My first thought too, at least it's harder to fall off.
Someone on here posted about velocycles, fully enlcosed ones... I guess they'd offer more protection if you have a full-on fit

twybrow - 16/9/16 at 11:24 PM

However much you can lower the risk for yourself by wearing a full face helmet, body armour, a tricycle etc, how can you minimise the risk that your condition doesn't cause injury ir death to a 3rd party? There are no licenses for push bikes, but if the dvla/doctor feel you are unfit to drive, why is a bicycle any different?

Sorry, not the positive response you might have wanted, but i would be solving the 3rd party risk first, then get back on your bike and figure out how to protect yourself.

adithorp - 16/9/16 at 11:45 PM

quote:
Originally posted by Ninehigh
quote:
Originally posted by designer
I would have thought a tricycle would suit your situation.


My first thought too, at least it's harder to fall off.
Someone on here posted about velocycles, fully enlcosed ones... I guess they'd offer more protection if you have a full-on fit


Have you ever ridden a tricycle? Someone I knew used to time trial on one and once challenged me to ride it 100yrds up the road, turn around and return without falling off... I failed!

HowardB - 17/9/16 at 06:18 AM

Nick, congratulations on being seizure free for a good while. I'm sure that few of us could cope with removal of what we see as rights of freedom by something so random.

May I make 2 suggestions, 1 if you want to ride, find a club or companion to ride with, explain the condition be open and the right people will support you. 2 if you're worried about falling off, try a recumbent trike.

May you have many more months and years seizure free.

[Edited on 17/9/16 by HowardB]

nick205 - 17/9/16 at 09:13 AM

quote:
Originally posted by jps
Nick - perhaps drop my mate Gideon a line - he has a blog here which doubtless has some contact details on it: http://www.ngomedia.org.uk/tumourist/ (if you can't get hold of him off that i'll pm you an email address for him)

Gideon is a keen cyclist - he started having some short term seizures which he thought were down to a trapped nerve in his jaw or something. Things got worse - both in terms of the seizures and the overall - as it transpired he has a brain tumour which is likely inoperable. However he's kept at cycling in varying ways - and I guess has thought about some of the practicalities that you are now.

I'm not sure if he's ever had a major seizure whilst riding - when I was riding with him they were more like partial paralysis of one arm over a short period (couple of minutes) and he had a sense they were coming - but I would guess he may have some good practical advice.

I hadn't wanted to mention Gideon before - because the 'it turned out to be a brain tumour' thing isn't something I wanted to mention (!!) but perhaps he can give some helpful pointers.

PS - have you seen this thing? http://www.hovding.com/

£219 on their website - but if it works could be very good for your situation?



Thank you - I'll make contact and see what input he may offer me. Agreed it can't be a good place to be for him and I understand your hesitation in bringing it up.

nick205 - 17/9/16 at 09:18 AM

To others...

I have also considered a tricycle and a recumbent. The issue for me is that I get so much from cycling on a "normal" bike I don't really see them as a viable alternative for me. I also have a decent road bike already and to have to seel it through lack of use would be a real blow to me. Thanks for the input though.

People have asked above the difference between driving and cycling. To me personally cycling is so much more than a means of transport. It's greener, better for you (fitness wise) and cheaper than driving. Strong reasons to do it I feel!

twybrow - 17/9/16 at 06:42 PM

quote:
Originally posted by nick205
To others...

I have also considered a tricycle and a recumbent. The issue for me is that I get so much from cycling on a "normal" bike I don't really see them as a viable alternative for me. I also have a decent road bike already and to have to seel it through lack of use would be a real blow to me. Thanks for the input though.

People have asked above the difference between driving and cycling. To me personally cycling is so much more than a means of transport. It's greener, better for you (fitness wise) and cheaper than driving. Strong reasons to do it I feel!


So no recognition of the potential risk you pose to others Nick?

will121 - 17/9/16 at 07:32 PM

quote:
Originally posted by HowardB
Nick, congratulations on being seizure free for a good while. I'm sure that few of us could cope with removal of what we see as rights of freedom by something so random.

May I make 2 suggestions, 1 if you want to ride, find a club or companion to ride with, explain the condition be open and the right people will support you. 2 if you're worried about falling off, try a recumbent trike.

May you have many more months and years seizure free.

[Edited on 17/9/16 by HowardB]



As above things like this shouldn't cause an end to all enjoyment and activities, just watching things like Paralympics dressage horse riding as inspiration. Assuming any seizures are not frequent enabling you to consider riding, if you can reduce the risk which would inevitably result in falling off by increased protection head and if possible body and riding with others that are aware of the issue and give you space and stick to quiet roads or mountain bike off road route where causing issue with heavens forgive a car hitting you whilst on the floor can be reduced as in hind sight the personal impact it would have on the driver has also got to be a consideration

AlexXtreme - 17/9/16 at 09:43 PM

what about mountain biking..... less likely to have a bad accident, just keep to open areas. Muddy is also good as you go slow slowly so very unlilkey to do any damage

02GF74 - 18/9/16 at 11:57 AM

Off road biking would in theory be safer, no traffic. There are plenty of off road routes winchester way. Mud, earth and bushes are more forgiving on skin and bones than tarmac and concrete.

You can get body armour too.

Down side if something happens it may be a very long time before somebody comes that way.

My friends brother is/was working on an integrated cycling computer/gps/mob phone, one of the features was an emergency call feature, cant recall how it was meant to work but either detects a bump or being stationary for a set time when it will send an emergency text.

Re twybrows comment- its valid and worth thinking, a helmey may protect head but since there is no way if knowing where you ll land, could be over a bridge barrier, under the wheels of a lorry etc.

nick205 - 19/9/16 at 08:04 AM

quote:
Originally posted by twybrow
quote:
Originally posted by nick205
To others...

I have also considered a tricycle and a recumbent. The issue for me is that I get so much from cycling on a "normal" bike I don't really see them as a viable alternative for me. I also have a decent road bike already and to have to seel it through lack of use would be a real blow to me. Thanks for the input though.

People have asked above the difference between driving and cycling. To me personally cycling is so much more than a means of transport. It's greener, better for you (fitness wise) and cheaper than driving. Strong reasons to do it I feel!


So no recognition of the potential risk you pose to others Nick?



Yes - the danger I pose to others is a concern I have.

On the flip side having to come to terms with being epileptic is not something I can convey very well to others. It's a difficult thing all three of my kids refusing to be on their own with me in case of a seizure. Sadly they've seen me have one and had to fetch a neighbour (luckily a nurse who knew what to do) to help. It has to be said that aside from not wanting to have a seizure myself i don't want others to have to deal with it either.

The underlying issue for me is that I refuse to be dictated to by it and have it stop me doing things. At present the medication seems to be working for me and I hope it continues to do so. I plan to wait a little longer before any road cycling to see how things go (ideally 6 months seizure free).

I also like to swim for fitness. My GP and epilepsy consultant have both said there's no reason not to swim, but to verbally inform the lifeguards on duty at the pool in case of a seizure in the water. Yes, it's a worry, but I'm a good swimmer and enjoy it too. I went this weekend and to be honest travelling to and from the pool alone was more of a concern than the swimming itself.

I realise that this may not answer your question, but please trust me when I say I am aware and it is a concern!

nick205 - 19/9/16 at 08:40 AM

Thanks to others for the off-road MTB suggestions. I am already riding off-road (have done for many years) and yes the risks are lower to me and to others. I've acquired some http://web.taggisar.se/ stickers, which are applied to my bike, phone, helmet etc. Once registered the 2D bar codes on the stickers link to the Taggisar website where you can add your name, condition, medication and emergency contacts for the emergency services. I also wear an epilepsy wristband to help alert the public and emergency services to my condition. My hope in doing this is that it gives somebody some indication and help should they find me.

Cycling off-road is slower and poses less risk. However when cycling off-road I really like to travel quite a distance and enjoy being alone as well. With this it's questionable how quickly you may be found should there be an issue. Again my pleasure in being alone and enjoying my surroundings is really very hard to change at 42 years old.

[Edited on 19/9/16 by nick205]

nick205 - 19/9/16 at 10:56 AM

quote:
Originally posted by jps
Good video for the Hovding here:




Just watched this and I must say it's quite interesting. It does look like offering some head protection in the event of an over the bars off.

Attilauk - 19/9/16 at 11:20 AM

If you are worried about being found off road have you considered using a Garmin GPS bike computer? you can set them to connect to your phone and broadcast your position to selected people via the Livetrack function.

I use it if I'm out on a big ride so my missus can see when I will be home.

Mr Whippy - 19/9/16 at 11:49 AM

Personally (and I love cycling) I think the risks of your being on a road too high and even if you don’t injure yourself initially there is always the risk you will then be hit by a vehicle or cause one to swerve that could endanger someone else. If such a thing happened to someone else you would not get any pity or forgiveness from anyone just like that bin lorry driver killing all those folk just because he wanted to keep driving.

Yeah recumbent bikes are different; I think in many good ways too but definitely better than spending the rest of your life in a wheelchair if you fell of the normal bike and broke your neck.

There’s a time to be stubborn, this just isn’t one of them.

nick205 - 20/9/16 at 12:50 PM

Yes I have considered GPS positioning. I use the Strava app and it now appears to offer this feature. It will put my family's minds at ease and I will investigate it further.

A recumbent trike isn't horrible, but in my mind it seems a real step down from a decent road bike.

Not road cycling at all is of course an option, but with the life changes I'm already having to make it seems a step too far. I currently use my road bike on a turbo trainer in the garage, but the garage is about to turn into a bedroom and although the turbo trainer is good for fitness it's plain boring compared to the open road.

nick205 - 20/9/16 at 01:41 PM

Re-reading the whole post and everyone's replies I would like to point out that your input is much appreciated. No, it may not be what I was wanting to hear, but a wider view is useful.

Mr Whippy - 20/9/16 at 06:25 PM

I was looking at the self built recumbent bike approach to get round the drag issue as the wind seems to be the limiting factor for my road bike, even considered making a tadpole like shell bodywork, actually looks a really interesting project tbh

Add to that a sneaky electric motor and you have an eco high-speed cruiser

[Edited on 20/9/16 by Mr Whippy]

nick205 - 22/9/16 at 07:59 AM

Funnily enough I do have 2x electric motors at home, which I'm sure could be put into service. Battery weight to me seems an issue if trying to pedal the vehicle though. Good batteries are not cheap either. Also (I'd need to look into it) I think having electric power may make the "vehicle" powered, which I believe can open up more issues (for me). Finally it strikes me that powered vehicles (used on public highways) should be subject to tax, MoT and insurance etc, like cars. I suppose really bicycles should be too, but I guess that may prove a deterrent to getting people onto bicycles in the first place (doesn't seem to be such an issue for car drivers though).

adithorp - 22/9/16 at 09:26 AM

Have you considered tandems. That way you could probably get out and ride but be less risk to you/others should you have a siezure. Even if it's just short term untill you've been siezure free for longer and can be more sure riding doesn't cause them.
There's charities likeTHIS who lend them and have a list of pilots. We have a couple of guys who bring blind riders out on our Sunday runs where the tandem is provided via a charity. I'll ask them for more details next time I see them but that might be a blind charity (the one I linked to isn't blind specific).

nick205 - 22/9/16 at 10:30 AM

quote:
Originally posted by adithorp
Have you considered tandems. That way you could probably get out and ride but be less risk to you/others should you have a siezure. Even if it's just short term untill you've been siezure free for longer and can be more sure riding doesn't cause them.
There's charities likeTHIS who lend them and have a list of pilots. We have a couple of guys who bring blind riders out on our Sunday runs where the tandem is provided via a charity. I'll ask them for more details next time I see them but that might be a blind charity (the one I linked to isn't blind specific).


Thank you.

I rode a tandem once with a long time friend (able cyclist) and have to be honest and say it was not a great experience - however it could be a solution. To purchase they're not cheap and I don't really have the space to store one either. Again these issues can probably be overcome if need be and it might tempt SWMBO out on a bike as well


Whilst SWMBO has a bike she's not overly keen to join me cycling. She's had a go on my turbo trainer, but moaned about the lack of scenary. "Cycle outside then!" was my response.

[Edited on 22/9/16 by nick205]

[Edited on 22/9/16 by nick205]

gremlin1234 - 22/9/16 at 11:11 AM

quote:
Originally posted by nick205
Funnily enough I do have 2x electric motors at home, which I'm sure could be put into service. Battery weight to me seems an issue if trying to pedal the vehicle though. Good batteries are not cheap either. Also (I'd need to look into it) I think having electric power may make the "vehicle" powered, which I believe can open up more issues (for me). Finally it strikes me that powered vehicles (used on public highways) should be subject to tax, MoT and insurance etc, like cars. I suppose really bicycles should be too, but I guess that may prove a deterrent to getting people onto bicycles in the first place (doesn't seem to be such an issue for car drivers though).

you dont need a licence up to 250W power assistance 'e-bikes' or 'EAPC'
http://www.cyclingweekly.co.uk/news/product-news/electric-bikes-uk-law-234973

nick205 - 26/9/16 at 09:33 AM

quote:
Originally posted by gremlin1234
quote:
Originally posted by nick205
Funnily enough I do have 2x electric motors at home, which I'm sure could be put into service. Battery weight to me seems an issue if trying to pedal the vehicle though. Good batteries are not cheap either. Also (I'd need to look into it) I think having electric power may make the "vehicle" powered, which I believe can open up more issues (for me). Finally it strikes me that powered vehicles (used on public highways) should be subject to tax, MoT and insurance etc, like cars. I suppose really bicycles should be too, but I guess that may prove a deterrent to getting people onto bicycles in the first place (doesn't seem to be such an issue for car drivers though).

you dont need a licence up to 250W power assistance 'e-bikes' or 'EAPC'
http://www.cyclingweekly.co.uk/news/product-news/electric-bikes-uk-law-234973



Useful to know and something I wasn't aware of. Probably accounts for why the old gent round our way in an electric wheelchair insists on driving it on the road.

gremlin1234 - 26/9/16 at 05:08 PM

quote:
Originally posted by nick205
Yes I have considered GPS positioning. I use the Strava app and it now appears to offer this feature. It will put my family's minds at ease and I will investigate it further.
I know from other posts your using a samsung phone. probably worth having the samsung 'findmymobile' enabled too
which should find a phone (location) even if strava weren't running. it can also be used to make the phone ring at max volume even if on silent!
(yes its password protected etc)

nick205 - 30/9/16 at 08:19 AM

quote:
Originally posted by nick205
quote:
Originally posted by gremlin1234
quote:
Originally posted by nick205
Funnily enough I do have 2x electric motors at home, which I'm sure could be put into service. Battery weight to me seems an issue if trying to pedal the vehicle though. Good batteries are not cheap either. Also (I'd need to look into it) I think having electric power may make the "vehicle" powered, which I believe can open up more issues (for me). Finally it strikes me that powered vehicles (used on public highways) should be subject to tax, MoT and insurance etc, like cars. I suppose really bicycles should be too, but I guess that may prove a deterrent to getting people onto bicycles in the first place (doesn't seem to be such an issue for car drivers though).

you dont need a licence up to 250W power assistance 'e-bikes' or 'EAPC'
http://www.cyclingweekly.co.uk/news/product-news/electric-bikes-uk-law-234973



Useful to know and something I wasn't aware of. Probably accounts for why the old gent round our way in an electric wheelchair insists on driving it on the road.



Studying this a little more and discussing with some colleagues I do find this really quite interesting. As a means of encouraging cyclists to adopt EAPC it seems a good idea. It concerns me a little that people can move into it without any formal training, but as a keen cyclist (and having just been to Amsterdam) a way of increasing cycling seems a good thing.

One element I feel employers will need to progress on is improved cycle storage and provision of charging facilities - it would further encourage commuters to adopt the technology and benefit all of us by reducing cars on the road.

jps - 30/9/16 at 08:28 AM

Did you see this thing when it was in the press earlier in the year?

PodRide

In terms of 'the future of transport' - in practice I guess the challenge we have in this country is about the massive difference between city travel and rural travel and then the matter of the vast amounts of heavy commercial traffic we have.

907 - 30/9/16 at 01:26 PM

quote:
Originally posted by jps
Did you see this thing when it was in the press earlier in the year?

PodRide

In terms of 'the future of transport' - in practice I guess the challenge we have in this country is about the massive difference between city travel and rural travel and then the matter of the vast amounts of heavy commercial traffic we have.






I wonder where you would park that on a windy day ?