Epileptic at sea.

[Graham_Wright]

One of my grandsons has lost his way. From being a natural dinghy sailor at an early age, and going for everything exciting, he has now shut down and wandered (perhaps gently) into the temptations of canabis.
His father died when he was two and his mother has had a battle as a single mum with a mortgage and two offspring.
He underwent a couple of telephone interviews with RN recruitment both of which failed. I attempted to tutor him by email and 'phone during Covid and he eventually passed maths at GCSE level.
He denies the existence of Covid.
To top it, he began to suffer from epilepsy. He has been diagnosed but has averred he will not accept medication to cure or help.
He has shut down and looks destined for a street dweller having shunned his mother and the hospitality of another family.
He has no curiosity in the world and accepts fiction as fact. (On a visit to Barry, he accepted my naming of Flatholm and Steepholm as Guersney and Jersey).

I would like to help to rescue him.

I bought him an experience flight in a light aircraft for his eighteenth birthday. He declared he was looking forward to it. Covid delayed his uptake but then, after his first attack of epilepsy, I and the the flight school decided it would be too dangerous.

I ask for views on the usefulness and danger aspects of taking him to sea. I am based in Cardiff Bay and sailing within the Bay is safe and moderately unchallenging.
Out in the estuary, it can be challenging and, tide dependent, necessarily of longer duration.

As CO of a Sea Cadet unit, I experienced a few cadet, epileptic incidents and am aware they can be physically "active" often resulting in actual injuries. MOB with an epileptic could be fatal.

What do members advise?

 

[Sandy]

Seek a medical opinion.

 

[Graham_Wright]

Seek a medical opinion.

That is obviously the thing to do but difficult as only one person is allowed to be involved in his interface with the hospital consultant and that is not me. There is also a problem of physical separation. I have arranged an appointment with my GP to discuss it. I am sure a medic would have to protect themselves whilst giving an opinion.

 

[Petertheking1982]

I sail with my epileptic wife who's seizures are not currently controlled by Meds (she takes them but currently not effective, looking into getting implant to control). My general rules for her are no solo watches, if underway clipped on and life jacket if not in cabin, and rest of crew must be able to manage boat without her help. Helps if you know what triggers the epilepsy then you can make sure these are not included (for instance reading is one of my wifes triggers, so no chart work). It needs to be done on a case by case assessment though. If having seizures every day then I wouldn't take her, if managed with meds or if kown triggers can be managed then do dynamic risk assessments (ie if calm go on foredeck, if rough keep in cockpit clipped on ect). Main problems i feel are mob (clip on) and injury from falls / impacts during seizures (have chusions handy to protect from impacts during seizure). As above really you need to seek advise on his particular condition, frequency and triggers of seizures, are they major or minor seizures, and create your own risk assessments and control measures to mitigate the risks.

 

[Graham_Wright]

I sail with my epileptic wife who's seizures are not currently controlled by Meds (she takes them but currently not effective, looking into getting implant to control). My general rules for her are no solo watches, if underway clipped on and life jacket if not in cabin, and rest of crew must be able to manage boat without her help. Helps if you know what triggers the epilepsy then you can make sure these are not included (for instance reading is one of my wifes triggers, so no chart work). It needs to be done on a case by case assessment though. If having seizures every day then I wouldn't take her, if managed with meds or if kown triggers can be managed then do dynamic risk assessments (ie if calm go on foredeck, if rough keep in cockpit clipped on ect). Main problems i feel are mob (clip on) and injury from falls / impacts during seizures (have chusions handy to protect from impacts during seizure). As above really you need to seek advise on his particular condition, frequency and triggers of seizures, are they major or minor seizures, and create your own risk assessments and control measures to mitigate the risks.

Thanks - useful and a little reassuring.

 

[Graham_Wright]

I can't advise - maybe you should follow Sandy's advise?

I wonder how serious smoking pot (cannabis) is? ( If you are wondering , I am vehemently opposed to its' use.). Apparently they are going to legalise its' use in Australia.

"Countries that have legalized recreational use of cannabis are Canada, Georgia, Malta, Mexico, South Africa, Thailand, and Uruguay, plus 21 states, 3 territories, and the District of Columbia in the United States and the Australian Capital Territory in Australia"

Sorry I can't advise (as much as I'd like to) as I think you need professional advice

That is scary.

I wonder if there is any correlation between drug use and epilepsy.
His mother declares "he occasionally sniffs the weed".
No weed would be allowed on my boat (neither is tobacco!).

 

[jac]

Assuming you have a good relationship with his mum, why not suggest it to her. ( I assume she is the one person allowed to be his interface with the hospital)

He might want to retain some sense of agency here though so you might also want to get his buyin to say yes, subject to his Dr agreeing so that he doesn;t feel this is being done to him.

Assuming no issues then i would want to ensure that fits are not frequent ones - i.e. if he has one every day then it would be a no. If he has them once or twice a year then chances of him having one on the boat are pretty small. Also - does he have any indication before that one is happening - many do. ( i used to work with a guy who had them amd he warned us that he could tell and what to do)

If he can tell in advance and can get somehwre safe ( e.g. to the cockpit or to a bunk) then there should be no issue. Loads of people live with epilepsy - it just comes down to being a a condition that YOU would need to be prepared for and know what to do in advance.

 

[coopec]

That is scary.

I wonder if there is any correlation between drug use and epilepsy.
His mother declares "he occasionally sniffs the weed".
No weed would be allowed on my boat (neither is tobacco!).

Why single out "weed"? Why not the more serious drugs (incl. alcohol?)

Apparently cannabis is used to control epilepsy! Maybe you'll have to do a bit of research?

Epilepsy Association of Western Australia: Epilepsy Perth, Australia

 

[footsoldier]

Wow, that is a difficult situation. It wasn't clear from the original post that you are geographically distanced from him, which doesn't help matters.
I am a great believer in the restorative qualities of sailing, but I agree with Sandy that you first need to know what you are up against with a proper medical diagnosis. I am wondering if the evident problems are symptoms of some underlying condition that has not been identified as yet - one of the many syndromes that tend to afflict the young.
I wish you - and him - well.

 

[Petertheking1982]

Footsoldier touches on an important point. My wife knows her seizures are not the result of any underlying condition and does not need to go to hospital for 'normal' seizures. If it is recommended that your grandson needs to go to hospital after each seizure this could be an issue (and the advise shouldnt be ignored, as there are other serious medical conditions that can also give you seizures and result in death).

 

[ylop]

One of my grandsons has lost his way. From being a natural dinghy sailor at an early age, and going for everything exciting, he has now shut down and wandered (perhaps gently) into the temptations of canabis.

What do members advise?

I'd advise that "gentle" canabis use, whilst still illegal, is so widespread that it would not be my main concern. From what I can see most people grow out of it! I'm not sure being stuck on a boat with an old guy who is judging him by the standards of his own youth 60 years prior is going to get him realigned to the societal norm you wish for him.

I would like to help to rescue him.

mmm... I can see why a grandparent wants to intervene. I'm not sure "rescue" is a good choice of word though.

To top it, he began to suffer from epilepsy. He has been diagnosed but has averred he will not accept medication to cure or help.

That changes the risk profile but even with medication you can't 100% guarantee never to have a seizure, and some people will go years between seizures without medication. The clinicians will tell you he should take the medication and that will reduce the risk etc so not sure asking a Dr's advice will actually help. My main concern would be - could sea sickness (mild dehydration?) be a trigger? If not, then if he starts taking meds - is there any risk he vomits them up and doesn't get the proper dose.

As CO of a Sea Cadet unit, I experienced a few cadet, epileptic incidents and am aware they can be physically "active" often resulting in actual injuries.

so can epilepsy on a bus, or at the top of a flight of stairs, or whilst riding a bike etc. I suspect if he said he was going to cycle from Lands end to John o Groats to raise money for charity you would be encouraging him. Petertheking seems to have good advice on mitigating the risk. You can easily do all the things peter said without treating him special - just make your boat rules "L/J and clip on" at all time etc.

MOB with an epileptic could be fatal.

MOB could be fatal anyway.
[/QUOTE]

He denies the existence of Covid.

frankly for me that would be a far bigger issue than the epilepsy. Being trapped in a small space with someone like that would not do me any good, and would ruin my enjoyment from sailing. Your one saving grace is that usually people who get sucked into that sort of gullibility are getting information from "friends" or the internet and so the boat may disconnect those - or you might find you are sailing around whilst he stares at a phone!

To be more constructive, if I was looking to influence the life of a teenager to drive them in a more constructive direction I think (i) they need a project / ambition; (ii) you need to make it about what they want to do not what you want them to do. Obviously I've never met the lad, but there are a lot of young people who get excited about the prospect of being a youtube star / tic-tok influencer etc. You are in Wales. I'd sit down with him and watch a couple of episodes of "the Sailing Brothers" on Youtube and then ask him if he could help you go on an adventure like that and film it / post it etc. (if you are not familiar with them - a couple of fairly young welsh guys with low paid jobs who set off to sail a Contessa 32 round britain and filmed it as they went - youtube took off for them and they ended up going across the Atlantic etc. You don't need to go as far - but I don't think you taking him on a couple of weekend trips is going to achieve what you hope.

 

[Jonny A]

I can't offer any advice but I really feel for your predicament and hope things for your grandson turn out well. I know from personal experience it can be agonising trying to help a loved one who won't accept it. There is light at the end of the tunnel, no matter how far off.

 

[davidej]

I wish you luck as well . My friend suffered from epilepsy and he managed an Atlantic circuit single handed in a 27 ft yacht. However he recognized his problem and took the prescribed medications.

 

[William_H]

Hello Graeme
I feel for your concern for your grand son. By all means offer for him to do some sailing with you. It would be worth the risk of a seizure just to get him hopefully happy.
However above all listen to what he wants. He will be very alergic to being told he is wrong and what to do against his will. ol'will

 

[lustyd]

that sort of gullibility

I’d be very careful selecting the gullible ones in that particular debacle. Most of the population were lied to on many/most occasions throughout and the evidence for this is now available and being examined.

As for taking him sailing, I’d say go for it but be careful as said above get him to clip on and make sure your autopilot can steer if you need to sort him out.
I would ask though, are you sure he’s disconnected and not doing hobbies you don’t understand? Gaming is pretty big as both a pastime and career these days, and to older folk looks like a waste of time. We have people earning over a million bucks just for commentating on games so don’t dismiss it if he is into this. There could also be other lifestyle issues at that age affecting him, he could be gay or trans and just finds the world unaccepting or could be on the autistic spectrum and feels rejected.

 

[IanCC]

Epilepsy doesn't necessarily mean seizures. Can be seeing lights. A fair few only have seizures at night.

 

[Graham_Wright]

Epilepsy doesn't necessarily mean seizures. Can be seeing lights. A fair few only have seizures at night.

I received a photograph of him in fatigues (offered for my amusement) after he had elected to join a boot camp (didn't last long).
The photograph showed him with a black eye and bloody face. It seems true that it occurred during the night without his knowledge due to a seizure in his bedroom that he could remember nothing about.

 

[Blueboatman]

Can add very little I’m afraid
My thoughts were that epileptic fits can occur anywhere but that doesn’t necessarily confine epileptics to home does it ?
So, thinking that if you had three people aboard then you have a helm, a patient and a medic assistant , worst case .
So then I thought about a MOB situation and googled “can epileptics swim”?
Swimming with epilepsy: everything you need to know | Epilepsy blog

And everything seems to hinge on the word of the neurologist so perhaps that’s your next port of enquiry ?
Best luck
Anything is better than passively sinking in a spiral of non achieving
Just find that thing that motivates the bloke - could be navigating , engine maintenance , docking , sailing fastest , you just dunno.

On the marijuana thing , probably a bit of home grown is neither here nor there but the skunk stuff being grown is way stronger than anything the previous gen dabbled with .
Best luck

 

[mil1194]

Nothing realistically useful to add OP but wish you all the very best. I know from personal experience (brother) the effects from ‘occasionally sniffing the weed’. Turned a perfectly normal, live loving guy into a living nightmare.

 

[AntarcticPilot]

I can't comment on the issues related to drug use, as I have no experience of them.

However, I did have an experience related to having fits. It wasn't epilepsy in my case; the eventual diagnosis was "syncope of unknown origin", but at the time the effects looked very much like an epileptic fit.

It occurred on the first night of a planned long cruise up the west coast of Scotland. We'd had an enjoyable evening out, and my wife and I left the party earlier than the other members of the crew, and were settled in bed when the remaining members of the crew came aboard and decided to boil a kettle for a drink. Unfortunately, they used a gas burner that I didn't use regularly, and it set the CO monitor off. Of course, I jumped up to investigate and shortly afterwards passed out. I regained consciousness and almost immediately passed out again. On regaining consciousness the second time, I remained conscious and after resting for a while, was able to go back to bed. I should say that the CO levels were nowhere near enough to affect anyone; I was the only person who had any problems. I should also mention that we were at a pontoon on an island without hospital facilities, and the crew decided not to call for medical help once it was clear that I was recovering; if they had called, it would probably have had to be a helicopter.

Of course, this put our plans for the remainder of the holiday in question. The following morning, we discussed the matter - to the surprise of my wife who had remained asleep through all the excitement! Both the crew members thought that I might have had an epileptic fit; I could somewhat reassure them on those grounds, as I'd had previous episodes like it and had been put through a battery of tests to eliminate epilepsy. However, the upshot was that we decided that we could continue provided we followed the following precautions: That I wear a lifejacket at all times and that a) I should avoid being on deck underway and b) if it was necessary for me to be on deck, that I would be clipped on at all times. Given that there would be another experienced crew member aboard; a big, strong chap more than capable of hoisting me out of the water, we decided this would be sufficient.

I knew that I had a history of passing out that occurred very infrequently, and always in the early morning. Following this episode, I had further investigations, and the eventual diagnosis was that for unknown reasons (probably connected with the fight or flight reflex) my blood pressure was capable of suddenly dropping, causing me to faint (syncope). I have since then taken medication to avoid my heart changing its rate abruptly and have had no further trouble.

The main point is that once we were aware of the potential problem, we discussed the matter together and agreed on how to minimize the risk. I was fairly sure that it was a one-off, and that it was highly unlikely that I would have another episode, but of course, my crew had seen a pretty distressing display! So we had to balance my viewpoint that I'd be OK with theirs that they'd seen it happen!