Paddling with epilepsy

Inland paddling
Post Reply
ali
Posts: 128
Joined: Tue Nov 11, 2003 4:42 pm
Been thanked: 1 time

Paddling with epilepsy

Post by ali » Mon Jul 27, 2009 8:41 am

I was wondering what precautions other clubs have but in place to allow paddlers with epilepsy to take part in the sport. My real worry is exiting a casulty from a boat when they are having a seizure, a sit on top is the ideal answer but people don't like to be made to feel different.

Thanks

Ali

User avatar
AndyK
Posts: 406
Joined: Sun Dec 19, 2004 5:41 pm
Location: Buxton

Re: Paddling with epilepsy

Post by AndyK » Mon Jul 27, 2009 9:02 am

My partners rowing club have just been dealing with this very issue. The lady in question had two outings where she had a fit and they have had to have a "home truths" discussion with her because she put the rest of the crew in danger each time, as both times it occured at the far end of the lake where there is nobody. I dont think she has been back since.

It is a delicate issue. Both outcomes have the ability to destroy a club, someone dying or someone playing the equal ops card when it may not be appropriate.

It is similar to when I was at uni and we had a blind lad who wanted to paddle. That led to arguments

mfflower
Posts: 136
Joined: Thu Dec 15, 2005 10:03 am
Location: Brough

Re: Paddling with epilepsy

Post by mfflower » Mon Jul 27, 2009 9:17 am

We had someone with - I think very mild - epilepsy. I think they once had a fit whilst on the river. They knew a fit was coming, sat on the bank and waited for it to pass before walking off. At any rate they were fine, and not far from the road (are you ever in England / Wales?).

DaveB
Posts: 315
Joined: Sat Nov 06, 2004 9:21 pm
Been thanked: 6 times

Re: Paddling with epilepsy

Post by DaveB » Mon Jul 27, 2009 9:39 am

My Club has never had to deal with an epileptic so far as I know but my personal opinion would be to refuse to take minors on the water except in an open canoe or sit on top and whilst wearing a full life jacket to ensure they would float face up. An adult with mild epilepsy well controlled with medication who expects to get advance warning of a fit I would accept onto easy trips on placid water ina closed cockpit kayak but would still sugggest a life jacket rather than a BA

User avatar
justin-g
Posts: 2085
Joined: Sat Oct 01, 2005 12:58 pm
Location: Brizzle

Re: Paddling with epilepsy

Post by justin-g » Mon Jul 27, 2009 10:12 am

When i was a lifeguard i had to give CPR to a person who had a bad fit at the pool i was working at. From that experiece i think it would be difficult to paddle with someone who dosn't have good control over thier epilepsy. If a fit happend on the water you could be in real trouble. I think however with minor epilepsy ( called absence's in NZ) you prob could be ok.

It would come down to how controlled the person is with it.

J
White water "rider"

User avatar
BenW
Posts: 134
Joined: Mon Jan 22, 2007 3:33 pm

Re: Paddling with epilepsy

Post by BenW » Mon Jul 27, 2009 10:19 am

Medically I don't suffer from epilepsy, but I have blacked out and do suffer from having mini-mal style fit's and I have done for the last 8 years

I think that's a real shame about the lady from your partners rowing club. Epilepsy shouldn't mean you have to give up what you love doing. I did stop Squirt Boating for about a year when my fits were really bad as I couldn't trust myself [or expect anyone else] to get off the water if the worst happened, apart from that this does not stop me from doing anything and with out meaning to be big headed I'm a competant class V boater, and have my fair share of bling sat on my 'trophy shelf', all of which accomplished with having 'fit's' on the river.

Epilepsy can be controlled very well with medication If you have Epilepsy you know the risks [of every day life not just kayaking] very well, I see no reason to discriminate against it. Switch the situation round, would you like to be told you couldn't boat because of something that's completely out of your control? [To hopefully hit this home - did you know that the majority of humans will have an epileptic episode at least once in there life time? most people wont notice, for other's it's a lot worse]

Sorry to be blunt, but this sort of topic really get's my goat. Personally it's embaressing enough to have a fit infront of friends / family with out the added humiliation of being told you cant do something

I believe there's a slogan 'sport for all'...

Ben
----------------------------
www.mysterymove.com
----------------------------

User avatar
scottdog007
Posts: 1317
Joined: Fri Apr 03, 2009 10:34 pm
Location: Hertfordshire.
Been thanked: 1 time

Re: Paddling with epilepsy

Post by scottdog007 » Mon Jul 27, 2009 10:52 am

I have witnessed epilectic and diabetic fits on many occasions (though not to do with kayaking or canoeing), and they can be frightening. But normally this has happened because the person forgot to take their medication. What can happen is that the person can loose all reasoning, they don't respond to help or to orders, and when they come out of it they can actually not even remembering having a fit. I have seen one ocasion where someone went to help, and they got thrown across the room. It seems the fit can give a super human strength. But I guess there are different levels of epilepsy. My nephew has the worst, and he has probably one a day, and is completely uncontrolable. At college I shared a kitchen with diabetic and epilectic people and I saw probaly 4 fits. Even now it frightens me though I consider myself 'experienced'.

It is not very easy to see the warning signs of a fit occuring. If an epilectic person is accepted to a club, then everyone paddling with them should be warned. But my feeling is that is a person has a fit, and the fit is a bad, then it is too dangerious for everyone, and I would suggest that person stops kayaking or canoeing, unless maybe they start going in a 2 person boat.

Jarv
Posts: 49
Joined: Sat Jan 01, 2005 6:25 pm
Location: Bucks

Re: Paddling with epilepsy

Post by Jarv » Mon Jul 27, 2009 11:35 am

My partner used to suffer from fits. She is an open boater so had no issue with her continuing to paddle. I felt and she agreed that if she was to have a fit on the water it could arguably be safer for her in the water as she would be less likely to hurt herself. She would have just needed a bit of gentle support to her head. You do need to be careful as most people when they fit do have an increased strength level so can injure an unsuspecting person trying to help. It would always be best to leave them to fit and just make them comfortable after. Kayaking in a closed cockpit kayak was discussed, and we thought it might not be advisable as the person could possibly injure they back. This is because as the muscles contract and relax they could try and straighten and this could be affected by the back deck and back rest. I think it all depends on who the person is paddling with. Are the group leaders happy with them paddling. Are the other people happy. This would not necessarily be discrimination but do the other people in the group feel happy with dealing with the situation if it were to occur on the water. This is normally down to the other peoples lack of knowledge on the subject, and the fact watching somebody have a fit can be pretty scary.
Nick Jarvis

User avatar
scottdog007
Posts: 1317
Joined: Fri Apr 03, 2009 10:34 pm
Location: Hertfordshire.
Been thanked: 1 time

Re: Paddling with epilepsy

Post by scottdog007 » Mon Jul 27, 2009 12:03 pm

Slightly diversifying, but I got involved with a charity and helped out at a children’s home for epileptic children. I was in a room with 4 children on my own. One went into a fit. She grabbed my hand so very tight, she fell on her back and stuck her feet in the air. She was ridged as a pole. I stayed calm, and asked one of the other children to help. Then that child grabbed my other hand and also went into an identical fit. Then the third one also, and the forth got frightened and ran out of the room. 5 minutes later they all recovered as though nothing had happened. Later on I was told that with a group of epileptic people, one epileptic fit can start a chain reaction.

garya
Posts: 1435
Joined: Wed Aug 29, 2007 1:04 am
Location: Enfield, Lee Valley, North London
Has thanked: 5 times
Contact:

Re: Paddling with epilepsy

Post by garya » Mon Jul 27, 2009 12:38 pm

I have worked both at an adult traing centre and with work colleages who have been epileptic.

As others who live with epilepsy and know better than I, it can be very well controlled with medication. Most will know if they are about to have a seizure they can often feel it coming on.

As far as managing the risks and inclusion this can be done as part of any sensible risk assesmsnt and control mesure strategy.

* full sized high bouyancy (150N+ ) boyancy aid with neck coller that will foat them face up if unconscious
* open cockpit touring boat or open boat without to many thwarts
* sponsons or out rigger canoe to aid stability
* small raft or bellboat
* Competent and knowlegable partner / chaperone in the boat or very close alongside, to give one to one support.

I aggree that probably being the water and supported by someone else face up may be the safest place during any fit as there is nothing to hit yourself on. knowlege on the part of others in the group on how to tow the person into a shallow area or raft up to support the boat may help. Maybe a club based training exercise and simulation would help with this and let others understand and discuss to find out more about how best to help when someone has a fit.

Choosing suitable venues with easy bank access and water will also help. After a fit the person may whish to sleep or rest for a while or may not be able to contuine a trip straight away, They may also involuntrarily unrinate themselves and need to change. Both these issues need to be delt with with respect for the persons dignity.

Inclusion for all with the right managment is what we should do. We have as much to learn and enrich our own lives from the experiance as well as those we are assisting to participate in the sport. The following books my help provide some useful information, also ask the person themselves what they feel about things and make sure that they are invloved in the decision process.

All to often we talk about people with disabilities as if we know best and they are not there, or rush to help too quickly which is not always what they want.

http://www.amazon.com/Canoeing-Kayaking ... 0736083294


http://www.bcushop.org.uk/product/4/can ... led-people

Gary Archer
Last edited by garya on Tue Jul 28, 2009 12:46 am, edited 6 times in total.

User avatar
Patrick Clissold
Posts: 1740
Joined: Thu Mar 10, 2005 5:38 pm
Location: New Zealand
Been thanked: 2 times

Re: Paddling with epilepsy

Post by Patrick Clissold » Mon Jul 27, 2009 1:11 pm

mfflower wrote:We had someone with - I think very mild - epilepsy. I think they once had a fit whilst on the river. They knew a fit was coming, sat on the bank and waited for it to pass before walking off. At any rate they were fine, and not far from the road (are you ever in England / Wales?).
I was leading the group this chap was in that day. As Mark said he knew it was coming on and got himself to the bank. However the main thing was that he never told myself or anyone else in the club that he had this condition. So as you can imagine I was rather taken aback when it happened. It is obviously a sensitive issue, but it is vital that whoever is leading the group or has responsibility over them on the river be informed.

garya
Posts: 1435
Joined: Wed Aug 29, 2007 1:04 am
Location: Enfield, Lee Valley, North London
Has thanked: 5 times
Contact:

Re: Paddling with epilepsy

Post by garya » Mon Jul 27, 2009 3:23 pm

Patrick Clissold wrote:
mfflower wrote:We had someone with - I think very mild - epilepsy. I think they once had a fit whilst on the river. They knew a fit was coming, sat on the bank and waited for it to pass before walking off. At any rate they were fine, and not far from the road (are you ever in England / Wales?).
I was leading the group this chap was in that day. As Mark said he knew it was coming on and got himself to the bank. However the main thing was that he never told myself or anyone else in the club that he had this condition. So as you can imagine I was rather taken aback when it happened. It is obviously a sensitive issue, but it is vital that whoever is leading the group or has responsibility over them on the river be informed.
Not good ..:-(

This chap must have had ample and mutiple oppertunities when he joinned the club to tell people honestly about his conditon on his membership form, Trip booking - next of kin form or at the pre-get on briefing. It was just plain reckless on his part for his own saftey at least.

I always make the point of asking the group about and conditions or anxieties and letting people know they can approch me privatley if they do not want to speak in an open group forum. How can you be expected to look after them if you dont know all the facts.

In his defence this chap may have experianced discrimination based on his condition in the past and been excluded from doing the things he would have enjoyed, or found peoples attitudes to him changed hence he felt the need to not be completly open to everyone. Difficult situation...


Gary

mfflower
Posts: 136
Joined: Thu Dec 15, 2005 10:03 am
Location: Brough

Re: Paddling with epilepsy

Post by mfflower » Mon Jul 27, 2009 3:40 pm

garya wrote: Not good ..:-(
He did - to me. Apparently I forgot to tell Patrick, and possibly anyone else. Sorry.

Dr Robin
Posts: 739
Joined: Thu May 13, 2004 2:03 pm
Been thanked: 3 times
Contact:

Re: Paddling with epilepsy

Post by Dr Robin » Mon Jul 27, 2009 4:10 pm

This is obviously a very emotive issue and I can see it's touched a nerve for a few people.

I'm one of the many people who've had a fit. It happened just once, when I was on a plane about to fly to Norway, sitting next to Paula V. Since then I've had no symptoms, and, thankfully, it looks likely that it was a one-off.

Of course there's a complete spectrum of sufferers from me at one end to people at the other end who fit regularly without warning. I think paddlers do have a right to know about each others' medical conditions which may effect their paddling, but at the end of the day we all carry out our own individual risk assessments as adults and paddle or portage accordingly. If I'd had a fit yesterday whilst I was soloing the upper Oetz, I'd be dead. I accept that and paddle anyway. And if I had a fit whilst paddling with others I wouldn't expect anyone to risk their life for me.

User avatar
Paula_V
Posts: 460
Joined: Wed Sep 07, 2005 8:34 pm
Location: London
Contact:

Re: Paddling with epilepsy

Post by Paula_V » Mon Jul 27, 2009 4:59 pm

I also appreciate that this is a very emotive issue and that people shouldn't be prevented from doing the sport that they enjoy.

However, I think that those who have had a fit before or are epileptic, should also acknowledge that since kayaking is a high risk sport, that you may put people in danger if you have a fit, even if that is (clearly) not your intention.

Robin, you say that you would not expect anyone to risk their life trying to help you if you were having a fit. However I personally would nevertheless appreciate the chance to make the choice myself whether I would like to put myself into the situation that I am on a potentially committing and difficult river trip with someone who may have a fit.

Its really not on to neglect to mention if you are a sufferer or have had a fit (I'm not saying anyone has, but just wanted to make the point). This is a serious concern, not just arbitrary discrimination, and each person has the right to the knowledge available in order to make their own informed decision about whether they want to participate on that basis or not.

And those who have had a fit/ suffer from epilepsy - should certainly NOT BE DRIVING unless they have been given the all clear by the doctor to do so. If you drive you are certainly putting many more lives at risk than just your own. That is why you are not allowed to drive if you have had a fit within the last two years/ you have your epilepsy under control.
worldkayakblogs.com/paula

ali
Posts: 128
Joined: Tue Nov 11, 2003 4:42 pm
Been thanked: 1 time

Re: Paddling with epilepsy

Post by ali » Mon Jul 27, 2009 5:11 pm

I hadn't ment the topic to be such an emotive issue. In fact I was just looking for advice on how to keep ensure somebody with epilepsy can continue accessing the sport. The advice from garya and jarva has been very helpful thanks.

Dr Robin
Posts: 739
Joined: Thu May 13, 2004 2:03 pm
Been thanked: 3 times
Contact:

Re: Paddling with epilepsy

Post by Dr Robin » Mon Jul 27, 2009 5:19 pm

Paula_V wrote: Robin, you say that you would not expect anyone to risk their life trying to help you if you were having a fit. However I personally would nevertheless appreciate the chance to make the choice myself whether I would like to put myself into the situation that I am on a potentially committing and difficult river trip with someone who may have a fit.

Its really not on to neglect to mention if you are a sufferer or have had a fit (I'm not saying anyone has, but just wanted to make the point). This is a serious concern, not just arbitrary discrimination, and each person has the right to the knowledge available in order to make their own informed decision about whether they want to participate on that basis or not.
Do you think I should still be telling people about it? I did for a few months, but it's been over a year now without symptoms.

User avatar
Paula_V
Posts: 460
Joined: Wed Sep 07, 2005 8:34 pm
Location: London
Contact:

Re: Paddling with epilepsy

Post by Paula_V » Mon Jul 27, 2009 5:26 pm

Well, yes if it were me I would like to know - two years is the period for driving - so I assume that has some kind of medical basis. (And that is in relation to fits, not epilepsy only). I don't think that it would stop me paddling with someone, but they should tell me I think.

You probably paddle with the same people fairly regularly anyway, so once they know - its done.
Last edited by Paula_V on Mon Jul 27, 2009 6:30 pm, edited 1 time in total.
worldkayakblogs.com/paula

User avatar
janet brown
Posts: 786
Joined: Sat May 17, 2008 9:15 am
Location: Pulborough, West Sussex

Re: Paddling with epilepsy

Post by janet brown » Mon Jul 27, 2009 9:04 pm

BCU have a Special Needs policy http://www.bcu.org.uk/files/BCU%20Speci ... Policy.pdf

In this they state
These may be medical conditions such as Diabetes or Epilepsy. It is the responsibility of individual paddlers to disclose to the activity leader the implications of his/her whole condition relative to the activity they are undertaking.
A quiet word in the trip leaders/ coaches ear can save a lot of problems. The hydrotherapy pool where I work does take patients with controlled epilepsy in, but it is a good idea for all staff to be aware, especially of any warning signs they may experience. Apparently a fit can be preceded by smelling something specific eg bananas.

Janet

Post Reply

Return to “Whitewater and Touring”