SmartWatch and seizure detection devices

[resaebiunne]

Hello all,

I am curious if anyone has looked into some sort of device or wearable to help detect and alert others of seizure activity. I have done some research and one product that has come up is the Smart Monitor SmartWatch. It doesn't claim to be able to detect seizures, but it includes an accelerometer that can detect the jerking motion of a tonic clonic seizure. It then uses software that runs on an Android smart phone to send out alerts to family and caretakers that a seizure is taking place.

As I live alone, something like this would be very useful. As I posted elsewhere, in my most recent seizure, I wound up unconscious on the floor in my apartment for at least a day before I was able to get help. I was so weak and dehydrated that I was unable to walk, and had broken my shoulder during the seizure.

While this device seems like it might fit the bill, the main problem that I see with this device is that it doesn't appear to include some sort of 911 or emergency alert service. It's also somewhat expensive considering that it uses your existing phone to send out the text messages and phone call alerts.

I am curious what others do to ensure they get help during a seizure, especially for those who live alone. I am on medication now, but I am still concerned about what could happen if I have another seizure.

 

[AlohaBird]

There are several companies that make wearable push button alarms that are intended for the elderly, or at least marketed to them.
I researched this when my father was elderly but too damn stubborn to admit that he might need help.
These wouldn't help with detecting the seizure but you would be able to summon help as soon as you were compus mentis enough to push a button on the gadget around your neck.
There are some of these companies that also have a pre-arranged check in shedule. If they don't hear from you at a certain time they will try to contact you and failing that send in the cavalry.

That must have been ghastly lying there in that condition. I'm so sorry you had to go through that. One of these companies markets itself as the "I've fallen and I can't get up" button. Your story made me think of their ads.

 

[Cint]

I live alone also and I used to have the device that Aloha is talking about. But I didn't really find it helpful. There are other devices folks with seizures use, especially for nocturnal seizures. Check these out:

http://www.epilepsy.com/learn/impact/mortality/sudep/role-seizure-alerts
https://www.emfit.com/

Or maybe a seizure alert dog?

http://www.chelseahutchisonfoundation.org/

The gal who founded this ^ organization lives near me. I met her several years ago in a local Starbucks. She started this foundation because she lost her 16 year-old daughter in her sleep because of SUDEP. This organization helps those with epilepsy raise $$ for seizure dogs.

I don't have a dog either. Since I now have the VNS, it pretty much controls my bad seizures, so I don't want to take care of a dog, too.

 

[resaebiunne]

Thanks for the links, cint.

A seizure alert dog seems like an interesting concept, however I have heard of several negatives (not to be negative, lol). For one, if you don't have seizures often enough, the dog can "forget" the training. As I'm not sure how often I'll have seizures now that I'm on medication, I'm not sure if this is a legitamite concern or not. The other concern I had was the response of the seizure alert dog. Some dogs are simply trained to get the attention of others. As I live alone, this wouldn't be practical. Living in a tiny, 1 bedroom apartment means that my exposure to other people is minimal, and a dog of any type would be trapped inside my apartment if I had a seizure. Other dogs are trained to try to protect the individual during the seizure. This could be helpful in preventing future broken limbs, but wouldn't necessarily prevent me from winding up unconcious for a day.

I honestly like the idea of just having a caretaker message me every day with a sort of "dead man switch" type response. This isn't an ideal solution either though, as the apartment building I live in is essentially limited access, requiring a key fob for entry. If I'm unconcious, there would be no way for me to let someone in, either. Now, as far as I know, 911 would be able to enter, so if there is a way for a caretaker to call 911 remotely, this could be a solution. As I'm thinking about this though, there wouldn't be a way for a caretaker to know my location. If I had a seizure while out, for example, 911 could be dispatched to the wrong place. This seems like it would be a simple concept to implement a dead man switch on an Android or iOS based phone and wouldn't require the complexity of motion detection or seizure detecting algorithms which are prone to failure anyway. It also would work for other conditions that could render someone unconcious. Does something like this exist?

 

[Cint]

Thanks for the links, cint.

A seizure alert dog seems like an interesting concept, however I have heard of several negatives (not to be negative, lol). For one, if you don't have seizures often enough, the dog can "forget" the training. As I'm not sure how often I'll have seizures now that I'm on medication, I'm not sure if this is a legitamite concern or not. The other concern I had was the response of the seizure alert dog. Some dogs are simply trained to get the attention of others. As I live alone, this wouldn't be practical. Living in a tiny, 1 bedroom apartment means that my exposure to other people is minimal, and a dog of any type would be trapped inside my apartment if I had a seizure. Other dogs are trained to try to protect the individual during the seizure. This could be helpful in preventing future broken limbs, but wouldn't necessarily prevent me from winding up unconcious for a day.

Not necessarily. The organization I posted only seeks dogs that are trained specifically for seizures, therefore they take a while to train and are costly. But I do see your point about living in a small apartment. That is why I don't want a dog either.

Now, as far as I know, 911 would be able to enter, so if there is a way for a caretaker to call 911 remotely, this could be a solution. As I'm thinking about this though, there wouldn't be a way for a caretaker to know my location. If I had a seizure while out, for example, 911 could be dispatched to the wrong place. This seems like it would be a simple concept to implement a dead man switch on an Android or iOS based phone and wouldn't require the complexity of motion detection or seizure detecting algorithms which are prone to failure anyway. It also would work for other conditions that could render someone unconcious. Does something like this exist?

ADT has a medic alert system.
http://www.adt.com/media/health/

WITH ADT MEDICAL ALERT, HELP CAN BE JUST A BUTTON PRESS AWAY

We know discussing emergency response systems isn't easy. But it is important. As we age and health concerns pop up, it's crucial to have reliable support. That's why we offer ADT Medical Alert Systems. Our state-of-the-art systems boost the users independence and loved ones' peace of mind. The simple push of the lightweight, waterproof help button signals a trained Monitoring Professional. They can even contact emergency services as needed. This saves precious time and provides confidence that care is always there.

Our Basic and Plus systems are perfect for use around your home, while use our new On-The-Go Emergency Response.

NEW! On-the-Go Emergency Response system can alert caring ADT professionals for help 24/7/365 from both inside and outside the home.

http://www.adt.com/wps/wcm/connect/772cf88047584763b9b5fd3b6be64960/?MOD=AJPERES

 

[AlohaBird]

My dog is trained to get MY attention which gives me some extra warning I wouldn't otherwise have.
Mine are nocturnal so, if he wakes me up in time, I can keep a partial seizure from going general.

But if you had daytime seizures a dog like this could give you enough warning so that you wouldn't get hurt. E.g. if you were in the kitchen with a knife in your hand, you would have time to put it down and go sit down on the couch or get in bed. He can sense it coming on way before you could.

I can see in your case, a dog like this might be able to "bring you around" sooner. Mine always licks my face to make sure I'm OK.

I highly doubt a seizure alert dog would ever "forget". I often go 6mo-a year in between seizures. That would be like a fish forgetting how to swim.


I do understand the concern about tight quarters. But a seizure alert dog doesn't always have to be some huge German Shepherd. My dog looks bigger in the foreground of my pic but really he is only 30lbs. He is just your basic shelter mutt, often the smartest dogs around.

And, sorry, no, you can't have this one. He and I are a team.
Cint is right that they can be expensive if you leave the training to others. My dog and I found each other by accident (he was a feral street mutt in Mexico) so I got him for free and I did the training myself. But I know that that is not typical.

 

[resaebiunne]

Yes, I have seen those emergency alert buttons that you wear around your neck. They seem quite reasonably priced for what they are. The problem is that they only work if you're conscious. It's also worth pointing out that after I woke up from my seizure I was clearly in a state of psychosis and wasn't aware of what was going on or where I was. I'm just not sure a button would be the best solution. Also, I do carry a cell phone, so if I'm conscious in theory I should be able to just call 911 anyway (although somehow my phone wound up under the stove, so it wasn't convenient to get to).

I'm liking the idea of getting a dog based on what I'm reading. For now though, I think I'll give it some time and see how things progress before I commit to making a large investment.

 

[Cint]

Yes, I have seen those emergency alert buttons that you wear around your neck. They seem quite reasonably priced for what they are. The problem is that they only work if you're conscious.

Do you have an aura before going into a full blown seizure? If one has an aura before the T/C seizure, then an emergency alert system does work.

It's also worth pointing out that after I woke up from my seizure I was clearly in a state of psychosis and wasn't aware of what was going on or where I was. I'm just not sure a button would be the best solution. Also, I do carry a cell phone, so if I'm conscious in theory I should be able to just call 911 anyway (although somehow my phone wound up under the stove, so it wasn't convenient to get to).

I've had a few of those myself before I had the VNS. Once when 911 was called, the police later said I attacked him. I don't remember a thing. Fortunately he was kind and didn't arrest me.

I'm liking the idea of getting a dog based on what I'm reading. For now though, I think I'll give it some time and see how things progress before I commit to making a large investment.

Hope it works out for you.

 

[AlohaBird]

Your local Epilepsy Foundation can also connect your with more information about seizure alert dogs and what is available in your area for training.

I know that, for me, my dog makes all the difference in the world. It's just a peace of mind knowing that he is standing guard if I am incapacitated.

I hope you find a solution that works for you.

 

[valeriedl]

My brother's fiancé has epilepsy. A few months ago they got a dog that was about 4 years old from the pound. I'm not sure if the dog knows when she's going to have a seizure but she always knows when she's having one. If my brother is home she'll go get him if not she stays by his fiancé until she comes out of the seizure. I'm not sure if the dog does anything to try to bring her out of the seizure or not, I'll have to ask her.

The dog's never had any type of 'seizure alert dog' training but knows how to do this on her own. Not every dog can be like this though.

I have a cat who knows when I'm having seizures. He gets on top of me and won't let me up until 'he' feels it's ok for me to. He's a pretty big boy and not that easy to move. I'm not sure if he knows when I'm going to have one or not because he's almost always laying on me but he does know when I'm having it.

 

[AlohaBird]

The ability to sense a seizure coming on is something a dog either has or they don't. And if they don't, no amount of training is ever going to help. The training they get is in how to behave in public (e.g. sit at your feet in a restaurant instead of jumping on the waitress who has the food). I taught my dog that part but he knew about the seizures all on his own.
From what I have read, dogs that have some of the"working dog" breeds in their heritage are the best at this. Collie, shepherd, etc. They have the instinct to take care of the "lost lamb" in the flock.

 

[valeriedl]

I know there's no way my brother's dog would be good to go out in public with them without any type of training. She'd be jumping all over people and giving them kisses! If they were at a restaurant the dog would probably be running from table to table begging for food. She's as hyper as can be but when my brother's fiancé has a seizure the dog knows to stay with her - she just knows this all on her own.

The dog's a large dog and a mixed breed. They don't know what type of dogs her mommy and daddy were. For all they know they could have been mixed breeds too.

It's just funny, if that's the right word to use, that some animals know how to do things all on their own.

 

[AlohaBird]

One thing about the Americans With Disabilities Act is that it specifies that the disabled person can do the training themselves. It is not mandatory to have any official papers for the dog from any official organization.

The nice thing about my dog being trained to behave in public is that, with his seizure alert dog patches, I can take him with me on the plane (which I do fairly often from here back to see friends in California ). He snoozes at my feet and makes much less work for the flight attendants than most peoples children.

 

[valeriedl]

I am curious what others do to ensure they get help during a seizure, especially for those who live alone. I am on medication now, but I am still concerned about what could happen if I have another seizure.

I live with my husband but one of us will text each other every so often if I'm going to be alone for a long period of time. If I don't reply to his text, or send him one, then he will call usually call the house because sometimes we don't get good cell reception where we live. If I don't answer then he'll have someone come and check on me.

I don't know if there's someone you can do this with? A friend or family member maybe?

 

[resaebiunne]

Do you have an aura before going into a full blown seizure? If one has an aura before the T/C seizure, then an emergency alert system does work.

So far, in the two daytime generalized seizures I've had, I had no aura. One minute I'm fine, and the next I was on the floor confused and disoriented

I live with my husband but one of us will text each other every so often if I'm going to be alone for a long period of time. If I don't reply to his text, or send him one, then he will call usually call the house because sometimes we don't get good cell reception where we live. If I don't answer then he'll have someone come and check on me.

Yes, I have a friend who is doing essentially this. So far, it has worked out okay.

One thing about the Americans With Disabilities Act is that it specifies that the disabled person can do the training themselves. It is not mandatory to have any official papers for the dog from any official organization.

Yeah, this is a pretty cool benefit. I would be a bit nervous having never owned a dog before at my ability to train a dog. That said, a well trained dog is pretty cool and I would be happy to have one! A smaller breed would definitely be in order though, I wouldn't want a huge dog.

 

[AlohaBird]

This is a post that just showed up this morning over at the Epilepsy Talk site all about the various smart phone apps available. It might have some info that could help you. As they say, "There's an app for that!"

http://epilepsytalk.com/2015/08/02/top-seizure-apps-for-smartphones/

 

[Emerald]

I know you live alone, but what I do is my parents bought an electronic doorbell with two speakers. I carry the doorbell with me and if I'm within 500 feet of a speaker, it'll go off if I push it. If you live in an apartment and are friends with your neighbors, maybe you could have them put a speaker in their room somewhere. That way, if you accidentally push it, it doesn't call 911 or all your emergency contacts. Depending on the doorbell you get, it might have a larger range. I used this in a 4,000sqft (roughly) house and the 500 feet was just fine. Hope this helped somehow!