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qestion re; epilepsy - Page 31 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
439 posts
Hi Paul,
Thats what Hubby has been diagnosed with - Partial Complex seizures.
The seizures started 3 years ago, but the wanderings only started this year and are getting more frequent of late.
Thanks for replying, helps when your not alone x
Hi Sturdy,
yes we've been in some strange situations. Lisa can be on the bed one minute watching tv and the next walking around the bungalow actually in the seizure still. Lisa sometimes laughs or giggles like a child would playing a game....it's so strange as the adnormal electrical activity takes hold in those area's of the brain associated with long term memory (from childhood), mood and emotions and is upsetting sometimes.
We've also had issues in the shower, which is one reason we had it altered from a cubicle to a wet room with a strong chair with rubber feet to stop movement.
It can sometimes also happen out and about in the street, although not very often thankfully as she can actually run off, but again to avoid this danger in busy city centre's we have a wheel chair with a harness.
Lisa (as probably your husband does) can start undressing herself or me Image in public and we get some right funny looks lol not sure what people think we're about to get up to, but again it's lack of understanding with most people that's why not many come rushing over to help and just assume we're on drugs or something.
It's very difficult, and worrying if you live in a house with the biggest danger being the stairs.
Paul
Hi guys, oh Paul the taking clothes off in public places is a belter isn't it! OH has Complex partials that generalise and like Paul's Lisa, my OH can be seizing while mobile and chewing, choking, limb jerking, vomit, urine the works! Thankfully (in some ways- hell in others!) his seizures are all sleep related it's NFLE nocturnal frontal lobe E so we tend to keep him awake as much as we can but he crashes and burns quickly and if you take your eyes off him for 5 minutes it's enough and he's off!
Got into loads of scrapes over the years!
(((hugs)))
Marie x
We got our bathroom converted too - that warm water was a nightmare trying to keep him awake and he got cross when you kept annoying him! lol
Stairs are the enemy in our house too - sky diving down 'em at three in the morning is not to be recommended!
((hugs))
Marie x
Gosh, I am lucky. Hubby gets complex partials, but he only picks at his clothes and rubs his nose - he doesnt go walk-about.
Thanks for sharing everyone.

When Hubs wanders it's like he's on a mission, like there is something in his mind, theres a purpose to it, but he sees right through you, and barges past you as if your invisible.

The best bit is when he comes to a locked door, his brain doesn't seem to compute unlocking it (thank gawd) and he stands there battering the handle with a confused look on his face Image
With him having joint problems, he isn't very quick so we can keep up with him easily, only problem is he stops on the stairs and wobbles Image Image

Thankfully it has only happened at home so far as we don't go out much, and the front door is kept locked now just in case!
x
Hi, Sure need the door locks sturdygirl!
We've got alarms for seizures and wandering too so we know when he goes walk about!
Stairs remain an issue - tried baby gates too - he toppled over 'em!

I guess we find a way don't we!
M x
Amazing how we adapt to everything, when I look back it's unbelievable the changes we have made, but think it's sort of normal for us if you get my drift?

Marie, how does the alarm work for the wandering seizures? I did look into them a while back, but only saw them for tonic seizures.
Thinking of getting Hubs a cowbell Image
x
Hi the wander alarm is really good!
We got it from easylinkuk here's a link...
http://www.easylinkuk.com/page14.html

The one we have sits at the bottom of our bed and runs an infra-red beam so when OH's feet get out of bed and break the beam, a signal goes to my handset and either buzzes or vibrates to let me know or even wake me up(more usual!).
Wouldn't manage without them now and if you have social services input they will sometimes fund them s0 worth a try!

Marie x
Wow, Thanks Marie!
The wrist one looks really interesting and it has a panic button for Hubs too, so if he falls or comes round from a seizure without me realising he can just buzz me Image Image

The infra red ones may not work so well for us, - Hubs has to mix between movement and rest even during the night, as his joints stiffen if he is still for too long....2am he was doing his physio as his knee had locked again Image

Think I'll phone the OT, see where we stand
x
439 posts