How to live alone with epilepsy

[tecknojoe]

I'm new to the forum so sorry if this is a repost, but I searched through and couldn't find any threads like this. I'm looking for advice on how someone with epilepsy can live on their own. My girlfriend is getting ready to graduate from college, and she's worried about what to do. she's afraid to live alone because of the dangers of having seizures, and no one knowing it happened. She also can't get her license, so she worries about that affecting her with getting to and from work. One thought I had was maybe to get a dog and train it to do something to alert neighbors when she has seizures.

so for all of you, how do you manage to live on your own? what kinds of things do you struggle with, and what have you managed to conquer? I could really use any bit of advice to pass along.

[TempusFugit]

Hey there tecknojoe - and firstly, welcome to CWE

Having epilepsy should not mean that you can't live and enjoy an independent lifestyle. That said, it really does depend on what type of seizures your girlfriend has and whether they are suitably under control.

Off the top of my head, I would recommend a 'call in' system - for example, she (or yourself) agree to call at certain times of the day - if there is no response (or you don't get a call) then you may have an inkling that something isn't quite right. Of course, this would depend on how frequent her seizures :S

It is a tough one... and I kind of feel I am gate-crashing this thread as I am married with kids... that said, I am also on my own right now (freedom for a couple of hours

Stress alone can make seizures worse... remind her to breath occassionally too. I am looking forward to what other members are going to advise... it's a toughie

[tecknojoe]

thanks for the input. the "call in" method is something I never thought of. it's difficult but it is at least one option. When I met her, she would have days, maybe a couple times a month, where she would have the small seizures(she would stop talking and just stare forward for a second). it would happen on and off throughout the day. Now, she's on different medications, one of which is depicote(donno the spelling). It's pretty rare that she has the little seizures now. She'll have a day, maybe once every 3 or 4 months, where she has those little seizures, and she complains that her head feels fuzzy. then she'll have a grand mal seizure. she follows with one colonapin pill(again, my spelling is bad ).

I think stress definitely plays a huge part. being a college senior is one of the most stressful times for an individual. worrying about getting a job, getting good grades, and finding where you want to live.

[epileric]

If checking in is the type of thing you want I'd recommend checking with the various security companies & seeing if you can get a button installed in the home to call.

Personally I would feel like a child not allowed to grow up if I have to call anyone at specific times of day. It can also be awkward to have to call when in certain situations.

There is also the option of a seizure dog. They can be trained to perform certain tasks after a seizure.

[TempusFugit]

Personally I would feel like a child not allowed to grow up if I have to call anyone at specific times of day. It can also be awkward to have to call when in certain situations.

Fair and valid point However, if only for reassurance - maybe even a text message? Nothing too intrusive - but just a 'touch base' type of thing.

Confidence will be a major hurdle to get over... I really wish you and your girlfriend the best of luck

[epileric]

Confidence will be a major hurdle to get over... I really wish you and your girlfriend the best of luck

. In some ways I think the best thing you could do is just be there for her (nothing fancy). Something that I would think makes this so scary is the fact that she really doesn't know her boundaries yet. Watch that she doesn't impose imaginary boundaries on herself and encourage her to learn them but still be aware of her limitations.

Does she get an aura or any warning when she has seizures? If so you can always set up a safe place, be it the bed,sofa or a carpeted floor with little around to bash into etc. that she can go do when she feels one coming on.

[tecknojoe]

. In some ways I think the best thing you could do is just be there for her (nothing fancy). Something that I would think makes this so scary is the fact that she really doesn't know her boundaries yet. Watch that she doesn't impose imaginary boundaries on herself and encourage her to learn them but still be aware of her limitations.

Does she get an aura or any warning when she has seizures? If so you can always set up a safe place, be it the bed,sofa or a carpeted floor with little around to bash into etc. that she can go do when she feels one coming on.

She knows I'm always there for her, but the problem is we don't know if I'm going be living near her. it would obviously be easy if she moved into my neighborhood or something. anyway, about getting a warning sign, she does seem to realize when she's having a bad day with it. she'll complain that her head feels fuzzy, and usually she has a seizure that day. now, sometimes she takes a colonapin pill when her head feels fuzzy and she'll be ok. all good discussion though. anyone on here that is currently living alone or has in the past? I know someone has worked out a good system.

[Crystal11]

They do have service dogs for people with Epilepsy- but those dogs "work" for the person and in order for the dog to maintain its "work", the person has to have many seizures or enough for the dog to remember what to do. I have a guide dog who received training in seizure work- but he constantly works for me all day. My seizures are not happening every day but he constantly works and is near me.
For someone training a dog- you would need to know how to start out, how to find a dog with the ability to learn tasks and has the temperment to be a working dog. There are service dog schools in which you can apply for a dog- some schools have you wait up to a year or so on a waiting list. I would look into schools that are near you if you're interested in getting a dog. They help quite a bit but take a lot of responsibility and maintenance training. Some schools ask for you to pay part of it's training costs while other provide the dog free of charge. It requires one month training at a residential training school for service dogs.

If you live on your own and feel that its important to let others know, let your neighbors know about your condition- once you know the well enough.
I would also look into getting a medical ID which you can wear or carry and ID card with you.

Take care,
Crystal

[Meetz1064]

link that I found, for some phone numbers to get information about seizure dogs. Personally, I've heard more about the 3d place than I have the other 2......I just couldn't remember the name (surprise, surprise).

Seizure Dog Links

Ahhhhh, yes, here's the other one whose name I couldn't pull out of my memory :

Canine Assistants

Hopefully these will help some.....

[alivenwell]

link that I found, for some phone numbers to get information about seizure dogs. Personally, I've heard more about the 3d place than I have the other 2......I just couldn't remember the name (surprise, surprise).

Seizure Dog Links

Ahhhhh, yes, here's the other one whose name I couldn't pull out of my memory :

Canine Assistants

Hopefully these will help some.....

I totally agree with the acquisition of dogs. They are great companions and can get attention of others in a positive way. She should live near public transportation, several stores (in case one goes out of business), several doctors (various types), and a mall (shopping is very necessary!). I acquired an intelligent female mutt who is on high alert status to anything out of the norm.

If she has no cell phone, give her one for support when she needs it. It also serves as an identification in the event of an emergency by storing your name in there. And, she can call support lines to keep on top of her epilepsy. I use my cell phone's scheduler to remind me of taking meds. It's quite useful on a busy day.

[Cint]

Hi tecknojoe,

I have epilepsy and I now live by myself. I don't have a seizure dog, but I do wear the medic alert bracelet and have let the sheriff and the 911 officials in my area know of my condition(s), in case I should need them. I used to have a device similar to this in my home:
http://www.lifesignal911.com/

I live within walking distance of public transportation, a mall and many restaurants.

[tecknojoe]

Hi tecknojoe,

I have epilepsy and I now live by myself. I don't have a seizure dog, but I do wear the medic alert bracelet and have let the sheriff and the 911 officials in my area know of my condition(s), in case I should need them. I used to have a device similar to this in my home:


I live within walking distance of public transportation, a mall and many restaurants.

i thought there might be something in the market for a device like that. thanks for the info.

[McGill]

Tecknojoe, like Cint, I live alone & have epilepsy. I simply have learned to do what I can and don't try to compete with anyone else. I wear the MedicAlert necklace and since I work with the Police, they're all aware of my situation. Cint's living conditions (area, transportation, etc.) are a mirror of mine.

Personally, I'm a bit too independent to want to have to "check in" b/c my family over-reacted to every move I make. Possibly that's a bit too rebellious on my part; but I guard my privacy for that reason.

[Nakamova]

Hi tecknojoe --

I also live alone. A few years ago, I deliberately moved to a place where I could walk to stores and public transportation (in case I needed to stop driving), and I moved my business into my home as well. At the moment my epilepsy is well-controlled by medication so I don't worry too much about being on my own. My friends and family have each other's phone numbers and extra keys to my place, so if something seems wrong with me, they can get in touch. They don't call to check in on me, but I chat with them fairly frequently, and that has helped the few times when I have had a seizure and needed some help.

[Shelley]

I live alone, and love it. Nobody trying to be overly protective, or trying to do everything for me.
I have a cat who seems to have figured out if something is wrong. He nudges me, and is the sweetest pet I have ever had.
I try to take good care of myself, and not get stressed. I try to eat right, and get sleep.
I exercise, and try to get some sunshine.
I do have mostly absence with some simple partials and sensory seizures.
I wouldn't trade my privacy for anything in the world.

[Loopy Lou]

I'd been wondering about this myself. I moved back from my own flat in Ireland to live with my parents in England when things started getting hairy with the epilepsy. I'm 23 and should be living in my own place, but i'm very wary of moving out on my own again.

I suppose the thing i'm worried about is no-one knowing if i have a seizure too, so i know how your girlfriend feels, tecknojoe.

I think that everyone else has given pretty sound advice, but just wanted to say good luck to your missus :P

[skillefer]

Hi teck! You're awfully sweet to be helping your gf out like this. I lived alone for quite a few years. But then again, I had pretty good control thanks to the meds. I also had a cat that my then boyfriend swore acted weird when I was about to have a seizure. I drove, held a job, and pretty much took care of the daily stuff everyone else does.

[mglynn2]

Hi everyone, I'm tecknojoe's girlfriend. I didn't even know he started this thread on here until he just told me about it and found it very sweet. All of your suggestions and information are very helpful to me and make me feel soooo much better! I have been freaking out because I don't know what I am going to do after college but now I feel safer living alone after hearing your suggestions and stories.

[carcak]

Hi tecknojoe,

I have epilepsy and I now live by myself. I don't have a seizure dog, but I do wear the medic alert bracelet and have let the sheriff and the 911 officials in my area know of my condition(s), in case I should need them. I used to have a device similar to this in my home:

I live within walking distance of public transportation, a mall and many restaurants.

Hi,

I found your information very useful. My grandmother has seizures, and my mother lives next door to her hose. I'm triyng to find some sort of a bracelet, or pendant, where if my grandma has a seizure she can just click the button and an alarm would ring at my mothers house. Since the distance in itself isn't that big I was thinking that maybe there's something that works as a "walky Talky" and that would just alert my mom so that she can go to my grandma's house. Do you know if there's something like that in the market?

Thanks!

[Rae1889]

I think there is something called MedicAlert. Its a necklace that she wears or bracelet that connects her with someone she knows and 911 button.