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Author: Subject: Epilepsy and cycling
nick205

posted on 16/9/16 at 11:51 AM Reply With Quote
Epilepsy and cycling

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.






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ravingfool

posted on 16/9/16 at 12:32 PM Reply With Quote


I'll show myself out!



[Edited on 16/9/16 by ravingfool]

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907

posted on 16/9/16 at 12:37 PM Reply With Quote
" but maybe there are more that I haven't considered yet."


Says it all.






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gremlin1234

posted on 16/9/16 at 12:46 PM Reply With Quote
you can get 'airbags' for motor cycles, and airbag vests as well
http://carandbiker.co/motorcycle-airbags-review/

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jps

posted on 16/9/16 at 12:46 PM Reply With Quote
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?

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jps

posted on 16/9/16 at 12:50 PM Reply With Quote
Good video for the Hovding here:


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benchmark51

posted on 16/9/16 at 12:50 PM Reply With Quote
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]

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designer

posted on 16/9/16 at 12:59 PM Reply With Quote
I would have thought a tricycle would suit your situation.
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B33fy

posted on 16/9/16 at 04:40 PM Reply With Quote
What about a recumbent bike, they look the nuts and you can get a lick on with them.
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steve m

posted on 16/9/16 at 04:50 PM Reply With Quote
whenever I see a recumbent, I do wonder, why ? but also, I wouldn't mind having a go !

steve





Thats was probably spelt wrong, or had some grammer, that the "grammer police have to have a moan at




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adithorp

posted on 16/9/16 at 08:23 PM Reply With Quote
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.





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Ninehigh

posted on 16/9/16 at 10:54 PM Reply With Quote
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






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twybrow

posted on 16/9/16 at 11:24 PM Reply With Quote
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.

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adithorp

posted on 16/9/16 at 11:45 PM Reply With Quote
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!





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HowardB

posted on 17/9/16 at 06:18 AM Reply With Quote
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]





Howard

Fisher Fury was 2000 Zetec - now a 1600 (it Lives again and goes zoom)

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nick205

posted on 17/9/16 at 09:13 AM Reply With Quote
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.






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nick205

posted on 17/9/16 at 09:18 AM Reply With Quote
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!






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twybrow

posted on 17/9/16 at 06:42 PM Reply With Quote
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?

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will121

posted on 17/9/16 at 07:32 PM Reply With Quote
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

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AlexXtreme

posted on 17/9/16 at 09:43 PM Reply With Quote
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
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02GF74

posted on 18/9/16 at 11:57 AM Reply With Quote
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.






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nick205

posted on 19/9/16 at 08:04 AM Reply With Quote
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!






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nick205

posted on 19/9/16 at 08:40 AM Reply With Quote
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]






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nick205

posted on 19/9/16 at 10:56 AM Reply With Quote
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.






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Attilauk

posted on 19/9/16 at 11:20 AM Reply With Quote
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.

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