# Mum got these cameras



## Guest (Dec 16, 2017)

A couple of weeks back that I hate. She wanted them to spy on me when she is at work and when I'm in bed. They video you for 15 seconds. I never said anything to begin with as thought wait a few weeks then see how I feel. So last night I mentioned to her I hate them. I don't want them in this house looking at me. Also they are just pieces of plastic with a pathetic little lense. Worst christmas ever and it's because of these stupid motarolla pieces of rubbish. This one in my room stopped working anyway. Hopefully it won't be long before the other one stops working then they can both go in the bin. This is the broken piece of plastic. I just don't want to be watched by cameras but she won't do anything about it. The lense is looking into my bedroom so you can't see it but this is one. Exscuse the elf slippers.


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## LinznMilly (Jun 24, 2011)

So turn them round to face the wall, put something in front of them, or, if you can, unplug them or turn them off.


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## Gemmaa (Jul 19, 2009)

I'm guessing she put them up in case something happened to you while she's out? At least they only film 15 seconds and not constantly. You might be glad you've got them one day .


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## Guest (Dec 16, 2017)

LinznMilly said:


> So turn them round to face the wall, put something in front of them, or, if you can, unplug them or turn them off.


She'd only plug them in, turn them on and turn them back round. The one on that baby gate she taped.


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## Guest (Dec 16, 2017)

Gemmaa said:


> I'm guessing she put them up in case something happened to you while she's out? At least they only film 15 seconds and not constantly. You might be glad you've got them one day .


No I won't. I will always hate them til they are got rid off. They can film constantly, she just doesn't know that. I'll never be glad we have the horrid things. They aren't welcome. There are other ways that don't include cameras to know if anything happens to me.


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## rottiepointerhouse (Feb 9, 2014)

Have you asked her why she has put them up?


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## Guest (Dec 16, 2017)

rottiepointerhouse said:


> Have you asked her why she has put them up?


To tell her if I have a seizure. There are other ways to do that without making me uncomfortable by having cameras.


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## Gemmaa (Jul 19, 2009)

Maybe you could put up with them for a little while, and show her some of the other ways she could look out for you.


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## Guest (Dec 16, 2017)

Gemmaa said:


> Maybe you could put up with them for a little while, and show her some of the other ways she could look out for you.


She knows the other ways because she looked up other ways. I've put up with them for a couple of weeks now but I hate them. The cameras have to go.


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## Gemmaa (Jul 19, 2009)

Okay


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## LinznMilly (Jun 24, 2011)

danielled said:


> She'd only plug them in, turn them on and turn them back round. The one on that baby gate she taped.


She can only do any of them while she's in the house.  What I'm suggesting, is you wait until she leaves.


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## Guest (Dec 16, 2017)

Gemmaa said:


> Okay


The sooner they are gone the better. Mum just doesn't like the fact my opinion of them is different to hers.


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## Guest (Dec 16, 2017)

LinznMilly said:


> She can only do any of them while she's in the house.  What I'm suggesting, is you wait until she leaves.


She will know through the app though if I do anything with them.


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## SusieRainbow (Jan 21, 2013)

Are they linked to her phone ?
What could she do if you did have a seizure ?


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## Mirandashell (Jan 10, 2017)

Maybe a bit of hairspray on the lens? You will have to time it right though. And she will be able to see you are there, it will just be really blurred so she will think the lens is broken.


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## Guest (Dec 16, 2017)

SusieRainbow said:


> Are they linked to her phone ?
> What could she do if you did have a seizure ?


Yes they are via the app. Exactly lol. All she can do is phone my aunty over the road who goes out a lot.


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## Gemmaa (Jul 19, 2009)

danielled said:


> The sooner they are gone the better. Mum just doesn't like the fact my opinion of them is different to hers.


I'm sure she's just got your best interests at heart, it must be very worrying for her, but hopefully you can find an alternative and make it seem like it's her idea to get it.


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## Guest (Dec 16, 2017)

Mirandashell said:


> Maybe a bit of hairspray on the lens? You will have to time it right though. And she will be able to see you are there, it will just be really blurred so she will think the lens is broken.


Good idea but I don't want them in the house full stop.


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## Cleo38 (Jan 22, 2010)

Surely there must be other devices that are available that don't invade your privacy as much. Whilst her intentions are obviously good & she cares about you I would hate to have cameras watching me & it really would put me on edge.


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## Guest (Dec 16, 2017)

Gemmaa said:


> I'm sure she's just got your best interests at heart, it must be very worrying for her, but hopefully you can find an alternative and make it seem like it's her idea to get it.


I never agreed to her idea though. I don't approve of her buying a camera without speaking to me first.


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## Guest (Dec 16, 2017)

Cleo38 said:


> Surely there must be other devices that are available that don't invade your privacy as much. Whilst her intentions are obviously good & she cares about you I would hate to have cameras watching me & it really would put me on edge.


There are loads of alternatives that don't invade provacy at all. So you see exactly where I'm coming from?


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## Mirandashell (Jan 10, 2017)

I see where you're coming from too. I would also hate being watched 24/7.


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## Guest (Dec 16, 2017)

Mirandashell said:


> I see where you're coming from too. I would also hate being watched 24/7.


Makes me feel very uncomfortable. So this thread isn't unreasonable then.


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## Mirandashell (Jan 10, 2017)

No. It's just difficult because your mom has done it from good intentions. But no, it's not unreasonable to dislike being spied on. It's how you handle it that will make the difference.


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## SusieRainbow (Jan 21, 2013)

Is your mum your primary carer ?


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## LinznMilly (Jun 24, 2011)

danielled said:


> I never agreed to her idea though. I don't approve of her buying a camera without speaking to me first.


That's why I would do one of the things suggested above.

If it's linked to her phone, I'd place something in front of it, because then you're not tampering with them, so nothing to alert your mum about.


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## Guest (Dec 16, 2017)

Mirandashell said:


> No. It's just difficult because your mom has done it from good intentions. But no, it's not unreasonable to dislike being spied on. It's how you handle it that will make the difference.


I tried to have a nice calm chat last night and she just went mad, overreacted. Even I know she had good intentions but you know being spied on no I hate them.


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## Guest (Dec 16, 2017)

SusieRainbow said:


> Is your mum your primary carer ?


Yes she is.


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## Guest (Dec 16, 2017)

LinznMilly said:


> That's why I would do one of the things suggested above.
> 
> If it's linked to her phone, I'd place something in front of it, because then you're not tampering with them, so nothing to alert your mum about.


It might still alert her to sound by sending her a message saying sound.


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## 3dogs2cats (Aug 15, 2012)

You and your mum are only going to resolve this by having a calm conversation about it. Is there someone who can mediate between the two of you?


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## Guest (Dec 16, 2017)

3dogs2cats said:


> You and your mum are only going to resolve this by having a calm conversation about it. Is there someone who can mediate between the two of you?


That's what I tried to do last night. I said to mum listen these cameras, I'm not happy with them, they invade privacy and film me. She totally flipped. Despite me being calm.


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## Vanessa131 (Nov 16, 2014)

Unplug them, by ignoring your wishes she is abusing her position of being your carer. I would also be concerned about the app, someone could fairly easily see innapropiate footage of you, especially if a camera is in your room when dressing etc. 

Filming someone without consent is an abuse of power.


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## Guest (Dec 16, 2017)

Vanessa131 said:


> Unplug them, by ignoring your wishes she is abusing her position of being your carer. I would also be concerned about the app, someone could fairly easily see innapropiate footage of you, especially if a camera is in your room when dressing etc.
> 
> Filming someone without consent is an abuse of power.


Exactly what I thought. And yes that is another worry I have. Only takes one person to guesse right with what they have to type in to connect to the camera via thei4 phone. Then they can go blabbing tell others they know. I don't fancy weirdos seeing me.


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## Lurcherlad (Jan 5, 2013)

I wouldn't like it either Dan.

Could you have a panic button instead attached to a wrist band or lanyard?

If you are over 16 I would think you have full legal control over this type of thing for your own person.

Maybe ask someone else to speak to her on your behalf - labouring the point that they could be hacked, privacy, etc.

In the meantime, I would just turn them or cover them. Not much she can do once she leaves the house and she won't need them on when she's in.


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## Guest (Dec 16, 2017)

Lurcherlad said:


> I wouldn't like it either Dan.
> 
> Could you have a panic button instead attached to a wrist band or lanyard?
> 
> ...


I could have a panic button but the issue there is my seizures are tonic clonic ones so happen suddenly sometimes, if I'm in bed Buddy doesn't detect as he sleeps in another room and my door is shut and I don't seem to get my flashing light warnings before, if Buddy could sense when I'm going to have a seizure at night with my door shut and I had my warnings prior to a seizure that would work.


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## bearcub (Jul 19, 2011)

Do you have someone nuetral who you can talk to about this who could then explain to your mum why having the cameras is wrong for your situation?


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## Guest (Dec 16, 2017)

bearcub said:


> Do you have someone nuetral who you can talk to about this who could then explain to your mum why having the cameras is wrong for your situation?


Everybody who has seen it thinks it is the best thing ever. Next week my aunty and uncle and cousin arrive here from america to spend christmas with us, my aunty is my mums sister and her and my uncle lived here years ago not in this house obviously lol. My aunty is very close to mum and despite living in america knows the laws here in the uk too. So might have a word with her on saturday when she arrives to ask her to have a chat with mum as well. As well as me having a chat to my aunty myself. She is a good listener too. My sister would just say something like well tough.


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## LinznMilly (Jun 24, 2011)

@danielled You've been having seizures for years, haven't you? Why did your mum say you need them now, if you've been known to have seizures for years? Has anything changed in the last month or so, to make her think they're necessary?


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## rottiepointerhouse (Feb 9, 2014)

What about a lifeline? I got my Mum one of those set up last year and despite a lot of reluctance on her part to the idea she really loves the feeling of safety it gives her. The people who run it are so nice and friendly, they don't mind if it gets set off by accident and twice now they have called an ambulance for her when she has been taken poorly in the night.


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## Guest (Dec 16, 2017)

LinznMilly said:


> @danielled You've been having seizures for years, haven't you? Why did your mum say you need them now, if you've been known to have seizures for years? Has anything changed in the last month or so, to make her think they're necessary?


Yes since I was a teenager about 12 or 13. Now I'm 31. They have possibly started up again but at night, as I have been getting migrains again. I'm now on 1000mg keppra that's the easy name to remember. That 1000mg keppra is morning and night and it is massive. Have to break them in half to get them down or they get stuck somewhere in my throat.


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## dorrit (Sep 13, 2011)

Demotica products are often used for the elderly or dementia patient who still live at home.. Now before you stop reading many of these products would be ok in your situation.

There is a small personal alarm that connects to a safe number when the wearer feels unwell or falls they press the button and are connected to their 'safe 'contact. Some of these are on contract and some work via an app so its a one off payment ..no spying no intrusion or loss of privacy but still a safety net for both sides.
Another gadget only alerts to the 'safe person ' if the wearer becomes horizontal ie when they fall. this means the wearer doesn't have to press the alert its triggered automatically but only if they fall down..

Im not sure how you access them in the UK but the NHS has the following info... https://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/telecare-alarms.aspx


fall alarms - this is a portable device that is activated when the person wearing it falls to a 20 degree angle or more and lies without moving for eight seconds. A signal is sent to a portable pager or an autodial alarm telephone is activated.
movement monitors - these are mainly used at night and can alert a carer to epileptic seizures by detecting movement or monitoring vital signs. An alarm is triggered if the sensors notice something is wrong.
Maybe if you can show your mum you have thought about this and come up with a far better idea than her 'spy'camera (which will only help if she watches it 24/7 ) she will be more inclined to listen than if you just rage and say you hate what shes done. Remember, she is coming at this with love but also with fear.


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## LinznMilly (Jun 24, 2011)

danielled said:


> Yes since I was a teenager about 12 or 13. Now I'm 31. They have possibly started up again but at night, as I have been getting migrains again. I'm now on 1000mg keppra that's the easy name to remember. That 1000mg keppra is morning and night and it is massive. Have to break them in half to get them down or they get stuck somewhere in my throat.


Then, could she be trying to gather evidence of a seizure - or a cluster of seizures - to show to your GP, perhaps she thinks you need a medication review?

Just trying to see it from her viewpoint, too. My mum has heart failure, and has spent the year going in and out of hospital, and going from one, to the other, but it's never crossed my mind to put in CCTV.


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## Guest (Dec 16, 2017)

rottiepointerhouse said:


> What about a lifeline? I got my Mum one of those set up last year and despite a lot of reluctance on her part to the idea she really loves the feeling of safety it gives her. The people who run it are so nice and friendly, they don't mind if it gets set off by accident and twice now they have called an ambulance for her when she has been taken poorly in the night.


That might ge an idea. Though not every time I need an ambulance. The seizure I had at the end of august for example the night I went in hospital with my appendix, it wasn't because of the seizure she called 999. They say call 999 only if it lasts longer than 5 minutes, if the person goes into more seizures without it giving them chance to recover and gain concsiousness again, or if they really hurt themselves or you believe they need medical attention.


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## bearcub (Jul 19, 2011)

danielled said:


> Everybody who has seen it thinks it is the best thing ever. Next week my aunty and uncle and cousin arrive here from america to spend christmas with us, my aunty is my mums sister and her and my uncle lived here years ago not in this house obviously lol. My aunty is very close to mum and despite living in america knows the laws here in the uk too. So might have a word with her on saturday when she arrives to ask her to have a chat with mum as well. As well as me having a chat to my aunty myself. She is a good listener too. My sister would just say something like well tough.


That is really not fair. If you're not comfortable with the cameras then they absolutely must be taken down. If no one is listening, just take them down yourself.


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## Guest (Dec 16, 2017)

dorrit said:


> Demotica products are often used for the elderly or dementia patient who still live at home.. Now before you stop reading many of these products would be ok in your situation.
> 
> There is a small personal alarm that connects to a safe number when the wearer feels unwell or falls they press the button and are connected to their 'safe 'contact. Some of these are on contract and some work via an app so its a one off payment ..no spying no intrusion or loss of privacy but still a safety net for both sides.
> Another gadget only alerts to the 'safe person ' if the wearer becomes horizontal ie when they fall. this means the wearer doesn't have to press the alert its triggered automatically but only if they fall down..
> ...


Now theres some good ideas. I know she is. I tried to have a calm chat to her last night.


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## Sproglet (Aug 25, 2017)

Do you get any warning when you're going to have a seizure? The reason I'm asking is my mum was epileptic and she wouldn't get any warning sign at all (we would see it, but she didn't), so maybe an early warning system would not work for you?


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## Guest (Dec 16, 2017)

bearcub said:


> That is really not fair. If you're not comfortable with the cameras then they absolutely must be taken down. If no one is listening, just take them down yourself.


The one in my room is taped to the baby gate, I struggle with tape. Other one is just stood in the dining room on the window sill. Just a matter of finding where that one is plugged in. I know it's not fair.


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## Guest (Dec 16, 2017)

Sproglet said:


> Do you get any warning when you're going to have a seizure? The reason I'm asking is my mum was epileptic and she wouldn't get any warning sign at all (we would see it, but she didn't), so maybe an early warning system would not work for you?


During the day the Buddy can sense when I'm going to have one sometimes up to 24 hours before it happens, used to always get flashing lights before that weren't really there as a warning but don't often get that now.


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## kittih (Jan 19, 2014)

Perhaps pop a sock over the one on the baby gate or accidentally place a load of clothes over it.


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## Guest (Dec 16, 2017)

LinznMilly said:


> Then, could she be trying to gather evidence of a seizure - or a cluster of seizures - to show to your GP, perhaps she thinks you need a medication review?
> 
> Just trying to see it from her viewpoint, too. My mum has heart failure, and has spent the year going in and out of hospital, and going from one, to the other, but it's never crossed my mind to put in CCTV.


Yes she is for my neurologist but some weirdo can guesse the code or whatever it is she types into the app and be connected to the cameras then see everything I'm doing when I'm in view of it.


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## Guest (Dec 16, 2017)

kittih said:


> Perhaps pop a sock over the one on the baby gate or accidentally place a load of clothes over it.


Perfect for Buddy to steal lol. Yes at 5 years old he still steals things. He can reach that camera too.


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## LinznMilly (Jun 24, 2011)

danielled said:


> Yes she is for my neurologist but some weirdo can guesse the code or whatever it is she types into the app and be connected to the cameras then see everything I'm doing when I'm in view of it.


See, this puts a completely different spin on it. It's not that she's completely disregarding your feelings, but that she's trying to gather evidence in order to help determine if you're on the right meds, and at the right dose. I don't know about anyone else, but when I first read the OP, I thought it was for as long as the cameras continue recording.

It could be that, once she/your neurologist has enough evidence, they are taken down and your privacy restored. It might be worth persevering with it for now, and then bringing the matter up again after yoi've seen the neurologist again.


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## bearcub (Jul 19, 2011)

Does your neurologist know your mum is filming you without your consent?


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## Guest (Dec 16, 2017)

LinznMilly said:


> See, this puts a completely different spin on it. It's not that she's completely disregarding your feelings, but that she's trying to gather evidence in order to help determine if you're on the right meds, and at the right dose. I don't know about anyone else, but when I first read the OP, I thought it was for as long as the cameras continue recording.
> 
> It could be that, once she/your neurologist has enough evidence, they are taken down and your privacy restored.


Laws are being broken by her though. I'm uncomfortable with the cameras, she won't listen, she has no intention of getting rid of the cameras, I never agreed to this and she is abusing power.


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## Guest (Dec 16, 2017)

bearcub said:


> Does your neurologist know your mum is filming you without your consent?


No.


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## rottiepointerhouse (Feb 9, 2014)

danielled said:


> That might ge an idea. Though not every time I need an ambulance. The seizure I had at the end of august for example the night I went in hospital with my appendix, it wasn't because of the seizure she called 999. They say call 999 only if it lasts longer than 5 minutes, if the person goes into more seizures without it giving them chance to recover and gain concsiousness again, or if they really hurt themselves or you believe they need medical attention.


With Lifeline you can set up different arrangements for what they should do if you push the button. With my Mum she doesn't want to bother neighbours and her sisters are all getting on now so she wouldn't want them called out in the night and I live the other end of the country so we had a key safe put up and the arrangement is they call the ambulance and let me know. Years ago my FIL had one but we were local and key holders so the arrangement was for them to ring us and we would go over. You could have it set up so they ring your Mum . The people at Lifeline can talk to you so they would know if it had been going on for more than 5 mins and could also call an ambulance if necessary.


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## rona (Aug 18, 2011)

Dan, what was said before these cameras went up, did you both talk about it?

I know why your mum is doing something like this and I completely sympathize with her but I can see it from your side too, i'd hate it, and you are entitled to your say about your own privacy.

Just make sure you aren't cutting off your nose to spite your face


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## bearcub (Jul 19, 2011)

danielled said:


> No.


Can you contact him/her about it? Or one of the neurology nurses? Thing is Dan, you're totally right, what your mum is doing is wrong. A professional will know that and should help you (their patient). It's actually whats called a safeguarding issue and should be taken very seriously by your medical team.


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## Guest (Dec 16, 2017)

rottiepointerhouse said:


> With Lifeline you can set up different arrangements for what they should do if you push the button. With my Mum she doesn't want to bother neighbours and her sisters are all getting on now so she wouldn't want them called out in the night and I live the other end of the country so we had a key safe put up and the arrangement is they call the ambulance and let me know. Years ago my FIL had one but we were local and key holders so the arrangement was for them to ring us and we would go over. You could have it set up so they ring your Mum . The people at Lifeline can talk to you so they would know if it had been going on for more than 5 mins and could also call an ambulance if necessary.


Usually they last for 4 minutes. I never know what has happened and can't remember anything.


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## rona (Aug 18, 2011)

You don't even seem to know why your mum have these up. Maybe ask her that as a starting point for a conversation rather than just I hate them


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## Guest (Dec 16, 2017)

bearcub said:


> Can you contact him/her about it? Or one of the neurology nurses? Thing is Dan, you're totally right, what your mum is doing is wrong. A professional will know that and should help you (their patient). It's actually whats called a safeguarding issue and should be taken very seriously by your medical team.


I've just tried explaining this to her and she told me to get out of her sight because she has heard enough. She won't even give me the number so I can contact my neorologists secratery funny spelling to tell them.


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## Guest (Dec 16, 2017)

rona said:


> You don't even seem to know why your mum have these up. Maybe ask her that as a starting point for a conversation rather than just I hate them


To see if I'm having seizures in the night mainly. She checks on me with them while she is at work too. She is doing wrong, she is doing this without my consent.


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## bearcub (Jul 19, 2011)

danielled said:


> I've just tried explaining this to her and she told me to get out of her sight because she has heard enough. She won't even give me the number so I can contact my neorologists secratery funny spelling to tell them.


can you Google it?


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## Guest (Dec 16, 2017)

bearcub said:


> can you Google it?


Trying that now.


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## Zaros (Nov 24, 2009)

Mirandashell said:


> I see where you're coming from.


You can see what her mother sees, can you?

@danielled Have you thought about submerging one in the toilet bowl?:Angelic


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## KittenEevee (May 19, 2017)

...


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## SusieRainbow (Jan 21, 2013)

KittenEevee said:


> I would explain to her that webcams are not safe, if someone hacks into them they could be watching you too. She also can't watch you all the time on the webcam. Could you not get an alarm? could you not get a service dog?


The topic of 'service dog' was done to death a few weeks ago and not up for discussion.


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## Guest (Dec 16, 2017)

KittenEevee said:


> I would explain to her that webcams are not safe, if someone hacks into them they could be watching you too. She also can't watch you all the time on the webcam. Could you not get an alarm? could you not get a service dog?


Tried explaining that too but that is a load of rubbish according to her. Buddy alerts me and got into that discussion as mentioned it was done to death so not worth going there again.


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## Guest (Dec 16, 2017)

SusieRainbow said:


> The topic of 'service dog' was done to death a few weeks ago and not up for discussion.


Exactly though Buddy really does alert me especially 24 hours before.


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## Guest (Dec 16, 2017)

Zaros said:


> You can see what her mother sees, can you?
> 
> @danielled Have you thought about submerging one in the toilet bowl?:Angelic


My toilet happens to be electric lol.


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## KittenEevee (May 19, 2017)

....


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## SusieRainbow (Jan 21, 2013)

KittenEevee said:


> Okay sorry, just trying to help.


Sorry, just a bit of a sore topic !


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## lullabydream (Jun 25, 2013)

Danielle I know you feel betrayed about what your mum is doing.

As everyone is saying, it seems really unnecessary.

I think in a way Mum has good intentions on the whole.

Your epilepsy, isn't as bad as many people I have worked with who have seizures daily and can have many in a day. That's normal for them though, they are monitored closely and the end of the day.. epilepsy and any condition is not a competition.

What I will say, the more we, you and the experts know about a person's epilepsy the easier it is to treat. What I mean by this, is the more information gathered the better the treatment you can get to actually live symptom free.

I have read many a person's care plan on epilepsy, and have smiled at a few at some behaviour indicators prior to a seizure. Unknown to the person with epilepsy, not always, but sometimes can be a little how shall we put it. Out of the ordinary. They may go and do their normal tasks still...but actually be completely unaware, that they are doing completely laughable or amusing things. Some may be big gestures, some subtle.

It doesn't actually matter how long you have had epilepsy...things can change over time, from your perspective you no longer get warnings. However, you may do 'something' that's so subtle that in a busy household, this may be better than Buddy knowing you will have a seizure in the next 24 hours.

You love Buddy so much, and so do many dog owners.. they love their dogs too. Some have cameras set up in their homes whilst at work to make sure their dogs are ok. I know you are worried about hackers, but I am sure, hackers will be more than likely looking at more important things on the internet, than hacking camera apps. 
Your family use Amazon, so they shop online...there is a risk there. Which is a higher risk dealing with money and bank fraud than an app with a camera, which quite frankly...I would be more worried for those dog owners app being hacked that clearly show the only people at home is a sleeping dog.


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## picaresque (Jun 25, 2009)

Whatever the reasons for the cameras, you have every right to your autonomy. This is quite troubling tbh.


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## Lurcherlad (Jan 5, 2013)

danielled said:


> Exactly though Buddy really does alert me especially 24 hours before.


Can't Buddy sleep in your room? That sounds like an obvious solution to me.


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## bearcub (Jul 19, 2011)

picaresque said:


> Whatever the reasons for the cameras, you have every right to your autonomy. This is quite troubling tbh.


I completely agree.


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## stuaz (Sep 22, 2012)

I assume your over 18? Under UK law someone has the right to "reasonable expectation of privacy". What this means broadly is that you can record say an office but not a bathroom. The law gets fuzzier when it comes to private properties though, but a camera in your bedroom could be considered against a reasonable expectation of privacy however the medical element complicates things. 

This however is all well and good, but your not going to take your mother/career through the courts to remove some webcams. I presume as you have some sort of medical condition that you also have a health worker? If your mother is refusing to listen to your concerns then maybe speak to them?

I actually have cameras on the outside and inside of my property for security reasons and it's not something that concerns me in the slightest bit the difference with me is that is my choice to do so. I think in your case if we were simply talking about a camera in your living room then it's probably wouldn't be such an issue but the concern here is your bedroom.

I do however see it from your mums point of view and I don't think her intentions are malicious in purpose but probably a way (as she sees it) to protect you. I think if you try speaking to your health worker and talk through your concerns with them and maybe they can act as a form of mediation between you and your mum?


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## Guest (Dec 16, 2017)

Lurcherlad said:


> Can't Buddy sleep in your room? That sounds like an obvious solution to me.


Mum won't allow that. She'd let him sleep in the little living room connected to my room but jo further than that but yes that seems the obvious solution to me too. He has been known to constantly bark to raise the alarm to when I have a seizure and he sees.


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## Guest (Dec 16, 2017)

stuaz said:


> I assume your over 18? Under UK law someone has the right to "reasonable expectation of privacy". What this means broadly is that you can record say an office but not a bathroom. The law gets fuzzier when it comes to private properties though, but a camera in your bedroom could be considered against a reasonable expectation of privacy however the medical element complicates things.
> 
> This however is all well and good, but your not going to take your mother/career through the courts to remove some webcams. I presume as you have some sort of medical condition that you also have a health worker? If your mother is refusing to listen to your concerns then maybe speak to them?
> 
> ...


How does born in june 1986 and now 31 years old sound lol. Because I'm 31. Besides my neurologist I have an epilepsy nurse.


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## Guest (Dec 16, 2017)

SusieRainbow said:


> Sorry, just a bit of a sore topic !


Plus now is not the right time to even think about service dogs with some of Buddy's issues.


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## stuaz (Sep 22, 2012)

danielled said:


> How does born in june 1986 and now 31 years old sound lol. Because I'm 31. Besides my neurologist I have an epilepsy nurse.


If you dont have any other carers aside from your mum then it may be worth a chat with the nurse then, as a Doctor is probably less likely to get involved in something like this.


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## Guest (Dec 16, 2017)

stuaz said:


> If you dont have any other carers aside from your mum then it may be worth a chat with the nurse then, as a Doctor is probably less likely to get involved in something like this.


I have a carer besides her but she only does a few hours 2 days a week.


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## Guest (Dec 16, 2017)

lullabydream said:


> Danielle I know you feel betrayed about what your mum is doing.
> 
> As everyone is saying, it seems really unnecessary.
> 
> ...


A portable eeg would be better. All they do is monitor brain activity thereby showing any swizures that occurr. No camera involved there at least not one watching you like these two.


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## SusieRainbow (Jan 21, 2013)

Why won't your mum allow Buddy to sleep in your room ? And what other issues does he have, did I miss something?


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## bearcub (Jul 19, 2011)

stuaz said:


> I assume your over 18? Under UK law someone has the right to "reasonable expectation of privacy". What this means broadly is that you can record say an office but not a bathroom. The law gets fuzzier when it comes to private properties though, but a camera in your bedroom could be considered against a reasonable expectation of privacy however the medical element complicates things.
> 
> This however is all well and good, but your not going to take your mother/career through the courts to remove some webcams. I presume as you have some sort of medical condition that you also have a health worker? If your mother is refusing to listen to your concerns then maybe speak to them?
> 
> ...


The medical element doesn't complicate things though. There are many, many safeguards in place (written in law) that protect people with a disability or medical condition from being treated differently to those without. This situation is tricky because it's in a home environment but nevertheless Danielle has made her view very clear; the fact that she has epilepsy is actually irrelevant.

I do think that getting a professional or an advocate involved is the best way forward Dan. I really hope you can resolve it with your mum amicably


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## stuaz (Sep 22, 2012)

bearcub said:


> The medical element doesn't complicate things though. There are many, many safeguards in place (written in law) that protect people with a disability or medical condition from being treated differently to those without. This situation is tricky because it's in a home environment but nevertheless Danielle has made her view very clear; the fact that she has epilepsy is actually irrelevant.
> 
> I do think that getting a professional or an advocate involved is the best way forward Dan. I really hope you can resolve it with your mum amicably


It only complicates things if it was to go down the route of court, which this is very very unlikely to. Her mum would have to prove that the cameras were a necessity to help with the OP's medical condition. Yes there are many many safeguards in place for vulnerable people and particularly those that require a full time carer but it is quite a complex part of the law and certainly wouldn't be something I would like to give an opinion on with the facts that we know at the moment.


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## stuaz (Sep 22, 2012)

danielled said:


> I have a carer besides her but she only does a few hours 2 days a week.


Is she someone that you would feel comfortable talking to about this? I would recommend you at least try. Your mothers opinion may change about these cameras if she is approached by someone of knowledge and somewhat "authority".


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## FeelTheBern (Jan 13, 2016)

danielled said:


> Mum won't allow that. She'd let him sleep in the little living room connected to my room but jo further than that but yes that seems the obvious solution to me too. He has been known to constantly bark to raise the alarm to when I have a seizure and he sees.


You're an adult, and Buddy is your dog-a companion who can help you if required. Your mum has no right to say that your dog cannot sleep with you.


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## Guest (Dec 16, 2017)

SusieRainbow said:


> Why won't your mum allow Buddy to sleep in your room ? And what other issues does he have, did I miss something?


His habit of stealing plus he somehow worked out that he can get drawers and my wardrobe door open. He's known for pinching my bedding or trying to because the duvet dangles off the bed.


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## Guest (Dec 16, 2017)

stuaz said:


> Is she someone that you would feel comfortable talking to about this? I would recommend you at least try. Your mothers opinion may change about these cameras if she is approached by someone of knowledge and somewhat "authority".


Yes.


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## Guest (Dec 16, 2017)

FeelTheBern said:


> You're an adult, and Buddy is your dog-a companion who can help you if required. Your mum has no right to say that your dog cannot sleep with you.


My dog, my companion, my clever seizure alert pal even though he isn't registered or trained as one and also he is my best friend.


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## FeelTheBern (Jan 13, 2016)

danielled said:


> My dog, my companion, my clever seizure alert pal even though he isn't registered or trained as one and also he is my best friend.


Exactly. He's your dog and he should be able to sleep alongside you.


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## lullabydream (Jun 25, 2013)

danielled said:


> A portable eeg would be better. All they do is monitor brain activity thereby showing any swizures that occurr. No camera involved there at least not one watching you like these two.


A portable egg monitors brain activity...

It's no indicator of specific behaviour that may occur pre seizure which people may miss in a busy household

Let me clarify...behaviour is what a person physically does, or says.

In many care plans for epilepsy I have seen, and trust me I have seen many...I have read some weird and wonderful things which includes things such as object throwing, touching shoulders, tapping toes to floor...the list is endless. The person does these pre seizure and has no recollection of behaving so before having a tonic clinic at all ..it is just a precursor.

Having this knowledge can help others, know when you are going to have a seizure and could give you vital few minutes to get you to a safe space.

You are also over the age of 25...which means brain activity measurements for diagnosis of seizures and epilepsy is no longer as clear cut...the egg can work better for children. Brain activity spikes in adults due to aging, as my neurologist told me. I am not epileptic but have suffered seizures/tonic clinic 2 years ago and also still suffer absences. However can't be monitored with various devices as I am over 25...even though I had a brain activity scan that came back inconclusive due to age.

Buddy is a great detector but giving he gives you 24 hours warning, 24 hours notice is a long time with out 'living' per se.

I can see you don't like the monitors and I am sure no one would, but if it helped find out if I had a precursory behaviour to a seizure which would keep me safe then I would be ok being monitored like this for a short period.


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## Little P (Jun 10, 2014)

In your original post you said that they video you for 15 seconds. How exactly do they work as that suggests that they aren't continually filming but work with some sort of trigger mechanism?


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## Guest (Dec 17, 2017)

stuaz said:


> It only complicates things if it was to go down the route of court, which this is very very unlikely to. Her mum would have to prove that the cameras were a necessity to help with the OP's medical condition. Yes there are many many safeguards in place for vulnerable people and particularly those that require a full time carer but it is quite a complex part of the law and certainly wouldn't be something I would like to give an opinion on with the facts that we know at the moment.


Which it won't. I won't be taking it to court.


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## Guest (Dec 17, 2017)

lullabydream said:


> A portable egg monitors brain activity...
> 
> It's no indicator of specific behaviour that may occur pre seizure which people may miss in a busy household
> 
> ...


With the 24 hour warning from Buddy we know to stay alert and my aunty over the road comes in a lot when that happens. A portable eeg would help because during seizure changes in my brain activity changes. Mum is going ahopping today so goodbye cameras hello freedom and privacy if I can get the tape off and find and get to the plug on the one in the dining room.


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## Guest (Dec 17, 2017)

FeelTheBern said:


> Exactly. He's your dog and he should be able to sleep alongside you.


Try telling her that. She ahem believes training the old fashioned way despite the fact I tried to educate her about the pack theory rubbish, in her mind human is boss so dog should not be allowed in my bedroom.


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## rona (Aug 18, 2011)

danielled said:


> if I can get the tape off and find and get to the plug on the one in the dining room.


Just pop a towel or item of clothing over them, far less confrontational


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## Zaros (Nov 24, 2009)

You should start walking around the house with a white bed sheet draped over your head, Dan

Your mother might think she's caught sight of ghost activity and invite Derek Acorah and his crew round for tea one evening.


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## Guest (Dec 17, 2017)

Zaros said:


> You should start walking around the house with a white bed sheet draped over your head, Dan
> 
> Your mother might think she's caught sight of ghost activity and invite Derek Acorah and his crew round for tea one evening.


We already have one of those in the house. At least one. Went for a blood test not too long ago Jorja's doll that crawls and gurgles was upstairs turned off when I left, came back and it was on. We asked my aunty uncle and sister as they have a spare key but nobody had been in the house.


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## Guest (Dec 17, 2017)

rona said:


> Just pop a towel or item of clothing over them, far less confrontational


Can't trust Buds with that as he'll be stealing them. Or I would.


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## Zaros (Nov 24, 2009)

danielled said:


> We already have one of those in the house. At least one. Went for a blood test not too long ago Jorja's doll that crawls and gurgles was upstairs turned off when I left, came back and it was on. We asked my aunty uncle and sister as they have a spare key but nobody had been in the house.


:Wideyed

:Nailbiting

Would you like me to give you his phone number?


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## Lurcherlad (Jan 5, 2013)

rona said:


> Just pop a towel or item of clothing over them, far less confrontational


I'd buy a couple of tea cosies!


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## Lurcherlad (Jan 5, 2013)

Zaros said:


> You should start walking around the house with a white bed sheet draped over your head, Dan
> 
> Your mother might think she's caught sight of ghost activity and invite Derek Acorah and his crew round for tea one evening.


LOL!

I just spat on my iPad!


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## Rafa (Jun 18, 2012)

danielled said:


> I won't be taking it to court


Well, there wouldn't be much point in that anyway, I don't think.

I assume your Mother owns the house and you just live there, so it really is her right to place cameras in her house.

I'm sure your Mum hasn't put the cameras there just to p*ss you off, so she must feel she has a good reason. It seems to me from your posts that your Mum and others devote time and effort to caring for you so it's reasonable to assume the cameras are to benefit you and keep you safe in the long run.

IMO, sabotaging or covering the cameras is only going to lead to conflict, so really, the only way to deal with the situation is to take your opportunity and talk to your Mum about how uncomfortable you feel.


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## Guest (Dec 17, 2017)

Zaros said:


> :Wideyed
> 
> :Nailbiting
> 
> Would you like me to give you his phone number?


Nah, our ghost is a lady, very nice lady she is too. She just likes turning things on.


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## Guest (Dec 17, 2017)

Lurcherlad said:


> I'd buy a couple of tea cosies!


Oh I had an accident with some knitting when I first started knitting lol. It was meant to be a scarf but didn't look anything like one. You are all going to say you want to hear the rest of that story now aren't you lol.


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## Mirandashell (Jan 10, 2017)

I'm wondering how it's possible to make a mis-shapen scarf....


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## Guest (Dec 17, 2017)

Mirandashell said:


> I'm wondering how it's possible to make a mis-shapen scarf....


Well I managed it.


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## Mirandashell (Jan 10, 2017)

But it's just a straight line?


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## Guest (Dec 17, 2017)

Sweety said:


> Well, there wouldn't be much point in that anyway, I don't think.
> 
> I assume your Mother owns the house and you just live there, so it really is her right to place cameras in her house.
> 
> ...


Well I have tried that but she won't listen.


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## Zaros (Nov 24, 2009)

danielled said:


> our ghost is a lady. She just likes turning things on.


You wanna watch your boyfriend with that one then.:Smuggrin


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## SusieRainbow (Jan 21, 2013)

danielled said:


> Well I have tried that but she won't listen.


Dan , I think you and your mum are as stubborn as each other ! 
See if you can get your carer to put your view across.


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## lullabydream (Jun 25, 2013)

danielled said:


> With the 24 hour warning from Buddy we know to stay alert and my aunty over the road comes in a lot when that happens. A portable eeg would help because during seizure changes in my brain activity changes. Mum is going ahopping today so goodbye cameras hello freedom and privacy if I can get the tape off and find and get to the plug on the one in the dining room.


I will repeat...

Portable eggs are less effective in over 25s due to aging of our brains and obscure brain activity that can occur naturally which will give false warnings for seizures.

So if you did use one, I am sure you would tell us it's not effective or its 'telling lies'


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## Lurcherlad (Jan 5, 2013)

danielled said:


> Oh I had an accident with some knitting when I first started knitting lol. It was meant to be a scarf but didn't look anything like one. You are all going to say you want to hear the rest of that story now aren't you lol.


You sound like me with Crochet - never could get my head round that. 

Pretty good at knitting tho!


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## Lurcherlad (Jan 5, 2013)

Talking of Tea Cosies ....










Sure Buddy would love this one! 

Or maybe not! I can imagine him ragging the poor thing to death! 

There are a few ...


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## Guest (Dec 18, 2017)

Mirandashell said:


> But it's just a straight line?


Which is how it started but at the end it looked more like a tea cosy or an oversized hat lol.


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## Guest (Dec 18, 2017)

Zaros said:


> You wanna watch your boyfriend with that one then.:Smuggrin


Don't have a bf now.


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## Guest (Dec 18, 2017)

SusieRainbow said:


> Dan , I think you and your mum are as stubborn as each other !
> See if you can get your carer to put your view across.


I will do.


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## Guest (Dec 18, 2017)

Lurcherlad said:


> You sound like me with Crochet - never could get my head round that.
> 
> Pretty good at knitting tho!


I'm good at knitting now. Can't follow a pattern on my own though. Can crochet too after being told I won't be able to crochet. Never tell me I can't do something.


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## Guest (Dec 18, 2017)

lullabydream said:


> I will repeat...
> 
> Portable eggs are less effective in over 25s due to aging of our brains and obscure brain activity that can occur naturally which will give false warnings for seizures.
> 
> So if you did use one, I am sure you would tell us it's not effective or its 'telling lies'


I had an eeg at the hospital once years ago and it was effective. That is what they are called eeg's not eggs. Though I do like having eggs for breakfast sometimes lol.


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## lullabydream (Jun 25, 2013)

danielled said:


> I had an eeg at the hospital once years ago and it was effective. That is what they are called eeg's not eggs. Though I do like having eggs for breakfast sometimes lol.


Yes they are very effective in people under 25 years of age.

Often will get assigned as ambulatory monitors for people of this age to use outside of hospital...they will still use them in over 25s but results will be inconclusive...

I knew exactly what you meant by egg but as that is what you described it as..I carried on..


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## lullabydream (Jun 25, 2013)

For what it's worth...if you have the 'egg' test in hospital not only do you have the electrodes attached to your scalp with glue that can irritate...you are also recorded by cameras!


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## Guest (Dec 18, 2017)

lullabydream said:


> For what it's worth...if you have the 'egg' test in hospital not only do you have the electrodes attached to your scalp with glue that can irritate...you are also recorded by cameras!


You have the electrodes attatched to your scalp in a portable eeg too. Just without cameras that you gave no consent to have.


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## lullabydream (Jun 25, 2013)

danielled said:


> You have the electrodes attatched to your scalp in a portable eeg too. Just without cameras that you gave no consent to have.


Yes but what don't you understand that it would give false readings due to 'brain aging' in over 25.

You said you had one in hospital 'years ago'. Where you fitted the criteria.


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## Guest (Dec 19, 2017)

lullabydream said:


> Yes but what don't you understand that it would give false readings due to 'brain aging' in over 25.
> 
> You said you had one in hospital 'years ago'. Where you fitted the criteria.


It didn't take long. I wasn't admitted. Do I no longer fit criteria now because my epilepsy has changed or something daft? My age is no excuse so please stop trying to use that excuse. Last time I had one I was out after think it was 30 minutes. What don't you understand about the safegaurding issues going on here with these cameras that I never gave any consent?


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## SusieRainbow (Jan 21, 2013)

Dan ,people are trying to help you so please, don't be rude !
You no longer fit the criteria for continuous EEG becacause you are now over 25 yrs old.
We are all pretty much in agreemment that the cameras are invading your privacy and the installation should have been discussed and agreed.
Please stay civil or this thread will be closed.


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## Guest (Dec 19, 2017)

SusieRainbow said:


> Dan ,people are trying to help you so please, don't be rude !
> You no longer fit the criteria for continuous EEG becacause you are now over 25 yrs old.
> We are all pretty much in agreemment that the cameras are invading your privacy and the installation should have been discussed and agreed.
> Please stay civil or this thread will be closed.


There seems to be one or two people though that disagree that the cameras are invading my privacy and the installation should have been discussed and agreed. They will do eeg's on people over 25 and now actually they have an event button you or somebody with you presses if you have an event/episode. I'm trying very hard to stay civil but it feels like some on here can't stay civil.


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## Lurcherlad (Jan 5, 2013)

danielled said:


> It didn't take long. I wasn't admitted. Do I no longer fit criteria now because my epilepsy has changed or something daft? My age is no excuse so please stop trying to use that excuse. Last time I had one I was out after think it was 30 minutes. What don't you understand about the safegaurding issues going on here with these cameras that I never gave any consent?


Dan, I don't think age is being used an excuse, but that because of natural changes that occur in all of our brains past 25 years old the test results could give false readings which will not be helpful and could actually lead the specialist down the wrong path.

From what I understand EEG is commonly used after the first seizure as a diagnostic tool.

Of course, anyone having tests will be asked to sign a consent form for that treatment and if monitoring by camera is required that will be printed on the form.

Quite different to someone erecting cameras in the home without our consent (and against our clearly expressed wishes).

They are two separate issues.

Whilst I'm sure you're grateful for mum's help with your condition (and it must be very worrying for her) that does not give her the right, in my view, to ride roughshod over your wishes.

Don't waste your time arguing with the same members over and over again - you will never agree! 

I suggest speaking to your GP about this too as they may be able to make mum see how inappropriate the cameras are.

I would also research the alarms someone suggested earlier in the thread. They might be a good compromise.

In the meantime just obscure the cameras to protect your privacy.


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## StormyThai (Sep 11, 2013)

danielled said:


> one or two people though that disagree


Dan, people are allowed to disagree without you become rude.
Maybe it is best that you forget about the EEG for now because it seems that you don't agree with what is said so no more needs to be said about it unless you can back up what you say with links...but as you don't have to it would be best to just let it go.

If you aren't happy with the cameras and your mum won't listen then either speak to another carer or take down the one looking into your room...you are an adult so if you aren't comfortable with something then change it


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## Guest (Dec 19, 2017)

StormyThai said:


> Dan, people are allowed to disagree without you become rude.
> Maybe it is best that you forget about the EEG for now because it seems that you don't agree with what is said so no more needs to be said about it unless you can back up what you say with links...but as you don't have to it would be best to just let it go.
> 
> If you aren't happy with the cameras and your mum won't listen then either speak to another carer or take down the one looking into your room...you are an adult so if you aren't comfortable with something then change it


Something will be done about the cameras. The cameras will go. I know somebody who had an EEG done in think it was either 2011 or 2012 and said person was over 25. That somebody happens to be a member of this forum. https://www.mayoclinic.org/tests-procedures/eeg/basics/definition/prc-20014093


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## Guest (Dec 19, 2017)

Lurcherlad said:


> Dan, I don't think age is being used an excuse, but that because of natural changes that occur in all of our brains past 25 years old the test results could give false readings which will not be helpful and could actually lead the specialist down the wrong path.
> 
> From what I understand EEG is commonly used after the first seizure as a diagnostic tool.
> 
> ...


I'm looking at those one by one and going to make notes too each time I read more about the suggested alarms.


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## lullabydream (Jun 25, 2013)

danielled said:


> Something will be done about the cameras. The cameras will go. I know somebody who had an EEG done in think it was either 2011 or 2012 and said person was over 25. That somebody happens to be a member of this forum. https://www.mayoclinic.org/tests-procedures/eeg/basics/definition/prc-20014093


I had an EEG done 2 years ago after having 2 tonic clonic seizures...
2 neurologist and person doing it also stated they give inconclusive results due to normal aging of the brain

I am over the age of 25

I have worked with various people with severe epilepsy for many years so I am also aware of portable EEG monitors too. All this is mentioned in previous posts that I wrote.

As I have mentioned previously...i work with people whose seizures last more than 20 minutes would be protocol to call an ambulance..10 minutes is usually the gold standard when ambulance is called for my individuals

I have been medically trained for too many years that I remember on how to administer oral buccal or anal suppository during seizures, and how to use VNS devices too.

I do not say what I am saying out of malice, I am saying what I say as I have been involved with many children and young adults with epilepsy and with writing reports, good observations I feel myself and members of the teams I have worked with have come together to help the medical profession to give the best treatment available to the individual. Have seen so much improvements over the years and many thankful parents/ carers for taking the time to write these reports and not just grade the seizures in numbers.

Do I think observations in epilepsy are vital... yes I do. As they can often be initially be misconstrued or overlooked

Did I think your mum was right to put up the cameras without your consent? No I never said that, however I do think she is like any parent doing it more out of concern for you.

Do I think Buddy is helpful with a 24 hour warning, yes to some degree. However the safest place for anyone who is going to have a seizure is to be laid down out of harm's way...if it's not quite 24 hours and you know it's the next day that you will have a seizure..laying down all day is taking away your life. I have felt sad for you that you have hurt your head when a seizure takes hold, so if mum was to catch some erratic behaviour that could mean a seizure were to happen then this could help you.


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## Clairabella (Nov 8, 2017)

lullabydream said:


> I had an EEG done 2 years ago after having 2 tonic clonic seizures...
> 2 neurologist and person doing it also stated they give inconclusive results due to normal aging of the brain
> 
> I am over the age of 25
> ...


I've just been sat in the background watching this thread and to see if Danielle manages to get a postive outcome and solution for this as it is clear she doesn't like the camera. Just want to say @lullabydream, from an outsider looking in, I didn't think you had any malice at all with the advice you was offering. Was your professional opinion and judgement on this, which should count for a lot seems as you have experience of working with epileptic patients. Sometimes when people are upset they don't take on board some things which are said to them, as I'm sure you know anyway but I certainly didn't see any malice in anything you said. Its obviously a medical fact that eeg's are inconclusive when used on a patient over 25. That is not you attackIng anyone, that is a medical fact xx

Hope either way Danielle is able to resolve this with her mum as she clearly doesn't like the cameras xx


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## lullabydream (Jun 25, 2013)

Clairabella said:


> I've just been sat in the background watching this thread and to see if Danielle manages to get a postive outcome and solution for this as it is clear she doesn't like the camera. Just want to say @lullabydream, from an outsider looking in, I didn't think you had any malice at all with the advice you was offering. Was your professional opinion and judgement on this, which should count for a lot seems as you have experience of working with epileptic patients. Sometimes when people are upset they don't take on board some things which are said to them, as I'm sure you know anyway but I certainly didn't see any malice in anything you said. Its obviously a medical fact that eeg's are inconclusive when used on a patient over 25. That is not you attackIng anyone, that is a medical fact xx
> 
> Hope either way Danielle is able to resolve this with her mum as she clearly doesn't like the cameras xx


Thank you...

They will try eeg on anyone initially to see if there is any trigger...so you have the electrodes on your head..dark room at times, flashing lights to see if you are photosensitive epileptic etc. It's basically looking at triggers under controlled conditions...recording for any involuntary movements too

The ambulatory monitoring works well especially in children and changes in children, especially as they grow. You often find that some children with epilepsy never actually 'shut down' as such on sleeping. It's really beneficial having this done away from hospital too, to get the bigger picture.

Epilepsy is still very much the unknown and if anyone has seen the effects a VNS device can have on some people it's very breath taking...they can depending on the individual have some kind of an 'awakening' and it's such an amazing thing. I really wish currently it was suitable for someone I work with now, in theory it would be, but I think he has too many additional needs to make him not a candidate.


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## Clairabella (Nov 8, 2017)

Have to be honest, I don't know an awful lot about epilepsy/neurology wasn't my field in training or even an area where I have worked but can imagine it to be such a specialised area to work in. 

You clearly have extensive knowledge on it though and can no doubt recommend/advise people, including Danielle, on suitable monitoring and treatment of her condition. 

Thing is, patients have google etc now and are much more aware of their conditions so they look online and can think they have the answer and don't get me wrong it can be useful tool for people to explore their options but online is such a broad spectrum of information and there's so many other factors which have to be tailored into people 's care and treatment. In this case, age being one of them. When Danielle had the first EEG it may have been appropriate then, she could've been under 25 etc but further along the long now and have to take those things into consideration when deciding the most appropriate treatment etc. Just as u said you have a patient who would be suitable for one treatment, could be though that other treatments were not appropriate for them. Everyone is different and have different needs etc. What worked for Danielle's friend, may not have be appropriate for Danielle and I think it's important for dan to remember that xx

Just hope she can work with her neurologist, mum, etc etc find a solution or effective treatment xx


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## Guest (Dec 19, 2017)

Clairabella said:


> Have to be honest, I don't know an awful lot about epilepsy/neurology wasn't my field in training or even an area where I have worked but can imagine it to be such a specialised area to work in.
> 
> You clearly have extensive knowledge on it though and can no doubt recommend/advise people, including Danielle, on suitable monitoring and treatment of her condition.
> 
> ...


I was a child at the time. EEG's are for any age not just under 25.


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## Guest (Dec 19, 2017)

lullabydream said:


> I had an EEG done 2 years ago after having 2 tonic clonic seizures...
> 2 neurologist and person doing it also stated they give inconclusive results due to normal aging of the brain
> 
> I am over the age of 25
> ...


If I'm having seizures they are happening at night when I'm in bed anyway. My epilepsy we found out this year gave me a neck injury at some point that has now healed. Still got the bump from the seizure I had end of august the night I went into hospital when my appendix threw a wobbly and the bump still hurts to this day.


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## Guest (Dec 19, 2017)

danielled said:


> I was a child at the time. EEG's are for any age not just under 25.


Yes, as a diagnostic tool.
You have already been diagnosed with epilepsy yes?
Do you understand what @lullabydream is saying about the difference in using EGGs for diagnosing as opposed to monitoring epilepsy?


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## mrs phas (Apr 6, 2014)

Danielle, may I ask is your mum your advocate? have you signed ANYTHING in the past that allows her to speak or act on your behalf, for example, dwp? dr? pips? any other officials? maybe because you get confused or cant take things in when rapid fired at you? I know she or your sister ( i think) fill most of your forms in and take you to appointments etc Is she your carer, wither paid by dwp or has underlying entitlement to carers?
IF you have signed away your 'responsibility' for yourself due to any factor then Im afraid you havent got much of a leg to stand on. Your mum just has to say ( which i believe she has reading the thread) she is acting in your best interests, trying to find if there is a pattern to your fits,needs to be aware of any complications so she can get home quickly, because you cannot act on your own behalf, she is within her rights, in fact it is her duty, to do all she can to keep you safe
which basicallly, like it or not, she is fulfilling


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## bearcub (Jul 19, 2011)

mrs phas said:


> Danielle, may I ask is your mum your advocate? have you signed ANYTHING in the past that allows her to speak or act on your behalf, for example, dwp? dr? pips? any other officials? maybe because you get confused or cant take things in when rapid fired at you? I know she or your sister ( i think) fill most of your forms in and take you to appointments etc Is she your carer, wither paid by dwp or has underlying entitlement to carers?
> IF you have signed away your 'responsibility' for yourself due to any factor then Im afraid you havent got much of a leg to stand on. Your mum just has to say ( which i believe she has reading the thread) she is acting in your best interests, trying to find if there is a pattern to your fits,needs to be aware of any complications so she can get home quickly, because you cannot act on your own behalf, she is within her rights, in fact it is her duty, to do all she can to keep you safe
> which basicallly, like it or not, she is fulfilling


This is incorrect. Danielle has the right to make her own decisions, regardless of her care needs.


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## Vanessa131 (Nov 16, 2014)

mrs phas said:


> Danielle, may I ask is your mum your advocate? have you signed ANYTHING in the past that allows her to speak or act on your behalf, for example, dwp? dr? pips? any other officials? maybe because you get confused or cant take things in when rapid fired at you? I know she or your sister ( i think) fill most of your forms in and take you to appointments etc Is she your carer, wither paid by dwp or has underlying entitlement to carers?
> IF you have signed away your 'responsibility' for yourself due to any factor then Im afraid you havent got much of a leg to stand on. Your mum just has to say ( which i believe she has reading the thread) she is acting in your best interests, trying to find if there is a pattern to your fits,needs to be aware of any complications so she can get home quickly, because you cannot act on your own behalf, she is within her rights, in fact it is her duty, to do all she can to keep you safe
> which basicallly, like it or not, she is fulfilling


Not true, unless it has been proven that Dani does not have the mental capacity to make decisions.


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## Little P (Jun 10, 2014)

I'm still interested to know exactly how they work as you said they only record for 15 seconds?


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## MilleD (Feb 15, 2016)

danielled said:


> It didn't take long. I wasn't admitted. Do I no longer fit criteria now because my epilepsy has changed or something daft? My age is no excuse so please stop trying to use that excuse. Last time I had one I was out after think it was 30 minutes. What don't you understand about the safegaurding issues going on here with these cameras that I never gave any consent?


This is really argumentative and unnecessary when people are trying to give you advice.

Once more a thread heading for closure by a mod I imagine.


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## katie200 (May 11, 2009)

Sorry to hear you're having a hard time Danelled. I'm sure your mum only worries about your safety and want to be sure nothing happens to you while she's not able to be with you. It must be hard for you and your mum as fits can be very scary and life-threatening. (friend of my sister died only a few months ago as he didn't have anyone caring for him at that time, it was very sad) So I'm sure your mum's just doing everything to keep you safe and well so you can live your life happily. I'm sure you feel lucky to have a family who is able to help you when you need it. I understand the cams are stressing you out and must feel odd having them there. I hope you and your mum can have a good chat and maybe find a middle ground you both can cope with, or maybe get someone who can meditate both your worries and needs and come up with a happy resolution. Good luck.


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## Guest (Dec 20, 2017)

Thank you Vanessa and bearcub. I’m leaving this thread well alone now to do even more research of the things suggested in this thread.


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## Guest (Dec 20, 2017)

katie200 said:


> Sorry to hear you're having a hard time Danelled. I'm sure your mum only worries about your safety and want to be sure nothing happens to you while she's not able to be with you. It must be hard for you and your mum as fits can be very scary and life-threatening. (friend of my sister died only a few months ago as he didn't have anyone caring for him at that time, it was very sad) So I'm sure your mum's just doing everything to keep you safe and well so you can live your life happily. I'm sure you feel lucky to have a family who is able to help you when you need it. I understand the cams are stressing you out and must feel odd having them there. I hope you and your mum can have a good chat and maybe find a middle ground you both can cope with, or maybe get someone who can meditate both your worries and needs and come up with a happy resolution. Good luck.


We will. Liked your post for the words of support. Yes epilepsy can kill but with me I'm lucky. It doesn't kill me it only makes me so much stronger.


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## lullabydream (Jun 25, 2013)

Vanessa131 said:


> Not true, unless it has been proven that Dani does not have the mental capacity to make decisions.


It's more complex than that...Everyone still is viable to make their own decisions..whether under the act or not as you put it..as it should be presumed everybody has capacity

Best interest meetings can and do help and can be acted upon on conclusion.

There are only a few people who are often classed as having no capacity at all and those are the ones who are under section...brain isn't playing on the correct act because there are various.

Then there can also be power of attorney over certain things.

Am sure @Vanessa131 you know all this, but I did want to give a fuller explanation about the act and about people making their own decisions.


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## WillowT (Mar 21, 2015)

danielled said:


> I could have a panic button but the issue there is my seizures are tonic clonic ones so happen suddenly sometimes, if I'm in bed Buddy doesn't detect as he sleeps in another room and my door is shut and I don't seem to get my flashing light warnings before, if Buddy could sense when I'm going to have a seizure at night with my door shut and I


In a previous thread entitled * nice try epilepsy* you spoke about how your dog would pass with flying colours and how frustrated you was that a charity would not let you register your dog as a recognised seizure dog. I think your above comment explains why. You also said in that previous thread that you couldn't get hold of your mum. Is it possible this scared her which has led to her feeling the need to place cameras around in case something happens and you couldn't get hold of her again? Not saying it is right just a possible explanation


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## lymorelynn (Oct 4, 2008)

I am closing this now as @danielled has said she will be retiring from the thread and looking into some of the suggestions made.


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