Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
borgolibero
New
- Messages
- 50
- Reaction score
- 0
- Points
- 0
RobinN
Super Mom
- Messages
- 7,834
- Reaction score
- 2
- Points
- 161
Crystal11
New
- Messages
- 712
- Reaction score
- 0
- Points
- 0
I have a guide dog from Guiding Eyes for the Blind but his main certification is in guide work - he was trained while i was there for seizure work since I have seizures too- Now the same school can send a guide dog for guide work/training then send the dog to service dog school for seizure work as well. GEB/Guiding Eyes for the Blind is the first school in America to be able to do this. Umbro is his name and he is a white male lab 65 pounds and is 5 years old now. I have had him 3 years now. I love him to death and he is a great service dog for me. They placed him with me since they knew he was a little more cautious at work/guiding and they knew I was deaf-blind as well. When I met him, he actually scared me because he was so interested in me- but we are a perfect match and later on they realized he was noticing my seizures before I did- he is using my behavior to tell as well. I had a seizure after breakfast one morning while in training in NY and Umbro was misbehaving so I corrected him but he kept doing it. The instructor asked if i was ok and at that point I said yes. A few minutes later I got my aura and knew something was wrong- so the instructor who also trained Umbro took me to a safe place and watched how Umbro interacted. Anyways- Umbro has helped me in many ways and even after I got home he did the same thing and so I called my instructor and told her what was up and she told me that they had worked with Umbro while I was there during seizures. They taught me what to do with him before the seizure would start.
They also told me that a dog cannot be trained to actually detect or notice the seizure- they either do it or don't. But you can train them on specific tasks or behavior you want to the dog to do during or after the seizure such as pulling radio wire on a two-way, or barking, getting someone within a short distance from the person, or the dog will stay with you up against you. Umbro tends to almost sit on me hehehe. When I get an aura I always sit down or laydown so I don't have a chance to wonder. Sometimes it works and sometimes it doesnt. Umbro will sit up again me if I'm up against a wall and he is unusually quiet and still- doesn't really act too strangly but he doesn't want me to do anything in way- If i am walking and a seizure starts up I can still walk so Umbro tends to turn inward to me and stand infront of me and gets worried and doesn't follow typical guide dog commands. As if he wants to say: "Mom, your not well STOP." Hehehe
They also told me that a dog cannot be trained to actually detect or notice the seizure- they either do it or don't. But you can train them on specific tasks or behavior you want to the dog to do during or after the seizure such as pulling radio wire on a two-way, or barking, getting someone within a short distance from the person, or the dog will stay with you up against you. Umbro tends to almost sit on me hehehe. When I get an aura I always sit down or laydown so I don't have a chance to wonder. Sometimes it works and sometimes it doesnt. Umbro will sit up again me if I'm up against a wall and he is unusually quiet and still- doesn't really act too strangly but he doesn't want me to do anything in way- If i am walking and a seizure starts up I can still walk so Umbro tends to turn inward to me and stand infront of me and gets worried and doesn't follow typical guide dog commands. As if he wants to say: "Mom, your not well STOP." Hehehe
majormana
New
- Messages
- 248
- Reaction score
- 0
- Points
- 0
all animals are sentive to human and other animal needs its just something in them that they know things pepole don't. I know becuase my kitten i wont call him a cat till march when he is 1 yr old sence he was about 5 months old if he sences something he'll either put his paws on me were ever he can reach deping on what i am doing at time or depening on circumstances and how hard headed i'm being he'll pass between me and my room till i lay down and then till he see's i'm alright he'll lay near me or my room depening on were i've layed down. he's a good match for me cuz as much as i can be a hard head he wont stop till he's made me listen i am getting better at listening to him but can still be a brat sometimes.
Ruth
New
- Messages
- 3,025
- Reaction score
- 0
- Points
- 0
Hi Majormana
That is great that you have a kitten that already is sensitive to your needs. It is easy not to listen to him/her. You are not being a brat, you just do not feel that you are going to have a seizure. Your kitten is saying otherwise to your seizures.
That is great that you have a kitten that already is sensitive to your needs. It is easy not to listen to him/her. You are not being a brat, you just do not feel that you are going to have a seizure. Your kitten is saying otherwise to your seizures.
Crystal11
New
- Messages
- 712
- Reaction score
- 0
- Points
- 0
Regarding seizure responce and alerting dogs-
They do cost a lot of money just like my guide dog did. I of course did not have to pay money for him since the school has foundations and other supporters that help in the funding of a guide dog. Same with Service dogs schools- they might ask $100 or less for a service dog it just depends on what school you would like to go to. Going to a service dog school is much different than a guide dog school. I went to Guiding Eyes for the Blind and we have interviews and assesments that we do before we arrive for one month training at the school. At service dog school you show up for several weeks and you are evaluated and presented a dog and they watch how you and your new dog work together and they find more specific things the dog needs to learn. Sometimes they present a dog and the dog doesnt respond to the person's seizure so then they change out dog. Anyways seizure responce dogs do just that, respond while alerting dogs are more rare and will alert you to a seizure almost like we have auras. My dog of course is a guide dog first and his second job is more seizure responce but he does give me some warning but its usually after he sees my behavior change and he kinda confirms things for me and he won't let me walk around or vere off and stopps me altogether and sometimes i just have to look kinda special and just stand there if it's a mild CP.
If anyone has any questions let me know. The instructor that worked with me also has several co-workers that used to work at service dog school then changed career to guide dog training.
Everyone take care and give your animals a pet from me.
Umbro barks a hello to everyone.
-CM
They do cost a lot of money just like my guide dog did. I of course did not have to pay money for him since the school has foundations and other supporters that help in the funding of a guide dog. Same with Service dogs schools- they might ask $100 or less for a service dog it just depends on what school you would like to go to. Going to a service dog school is much different than a guide dog school. I went to Guiding Eyes for the Blind and we have interviews and assesments that we do before we arrive for one month training at the school. At service dog school you show up for several weeks and you are evaluated and presented a dog and they watch how you and your new dog work together and they find more specific things the dog needs to learn. Sometimes they present a dog and the dog doesnt respond to the person's seizure so then they change out dog. Anyways seizure responce dogs do just that, respond while alerting dogs are more rare and will alert you to a seizure almost like we have auras. My dog of course is a guide dog first and his second job is more seizure responce but he does give me some warning but its usually after he sees my behavior change and he kinda confirms things for me and he won't let me walk around or vere off and stopps me altogether and sometimes i just have to look kinda special and just stand there if it's a mild CP.
If anyone has any questions let me know. The instructor that worked with me also has several co-workers that used to work at service dog school then changed career to guide dog training.
Everyone take care and give your animals a pet from me.
Umbro barks a hello to everyone.
-CM
Ruth
New
- Messages
- 3,025
- Reaction score
- 0
- Points
- 0
Hi Crystal
The cost is worth it, if your dog saves your life. Which he will. I did you not know get a dog for free. I had no idea there was a foundation. Thank you for the information. I am glad you have a seizure dog. I would not be able to afford it. Thanks for the information.
The cost is worth it, if your dog saves your life. Which he will. I did you not know get a dog for free. I had no idea there was a foundation. Thank you for the information. I am glad you have a seizure dog. I would not be able to afford it. Thanks for the information.
- Messages
- 3,450
- Reaction score
- 2
- Points
- 0
It takes approximately 4-6 months to train a Hearing
Guide Dog, and then another 3 months to work with
the Hearing Impaired / Deaf Owner - depending what
all is involved (if there's babies, children, etc - additional
factors involved). Hearing Guide Dogs work 24/7/365
days a year; they never have any breaks at all. Always
on the alert and ready. I had been on 3 major news which
I still have it all on VHS.
In addition, one of my Hearing Guide Dogs; no one had
trained her - and back then there was "no such thing as
'Seizure Response' dogs. But she was very unique; and
no one could figure her out. She could be in another
room and would be able to know when I would have a
seizure and she would be that quick! She was truly
amazing! However her life span was cut short due to
health reasons.
I learned from my Neurologist years ago, that people
with Epilepsy do have an odor sometimes when they
have seizures so it was most highly likely she responded
to it because she reacted to it. But she would make
sure I was in a safe position, even pouncing on me
to the chair, couch, or even floor. If I had already had
a seizure, she would push me somehow, and curl up
in a ball to keep me warm and would not allow anyone
near me (except family members). She nearly became
"disqualified" when the paramedics were trying to treat
me; she was that protective.
We miss her sorely, she was so special to us. She did
her work and beyond! She did so much that it was
amazing, even my son, he remembers a lot of what
she had did and done.
While true the White Samoyed Huskies are work dogs;
but I was peeved at times because people were spoiling
her! And that was a "No-No!" ~ but at one Christmas
Time; when the Grocery Store (Jewel Osco, which later
became Skaggs Albertson's - then they dropped it down
to Albertsons), the employees pitched in and gave her
a huge Christmas stocking just LOADED with Doggie Goodies
Galore. I was peeved! But of course, she would not allow
me to "touch her pressie", insisted on dragging that thing
to the car (it was hilarious watching her), and she would
not even let me put it in the trunk either!
:?
Instead, insisted on having it in the backseat WITH HER!
She let everyone know that was HERS! ALLLLLLL HERS!
And I even went to the butcher (we had one back then,
but since he passed away, that store is long gone), and
I would get after him all the time ... when I wasn't looking,
they always had the "GOOD BONE" waiting for her. And
what do I get? Huge Grins from the Butcher.... hahahaha,
NOT! She would walk out of the store with the big bone
in her mouth as proud as she can be!
Yup, that dog was spoiled! But she did her job so well and
beyond. Both my son and I cry once in awhile when we
look at the album. I had two Hearing Guide Dogs - one was
the older German Long Haired Shepherd; and he was par
excellence.
Both of my dogs had sponsors. Unfortunately, after my 2nd
one passed away, I had a major Sponsor, but the Organization
was supposed to replace the one we had; but they went under.
I had been trying to find another one for years...
Been on waiting list after waiting list - then when following up,
only to find out, I didn't exist anymore. My Physicians grew tired
of having to fill out forms.
Today, I need a "Everything Service Dog" - Hearing, Assistance,
Seizure, and Seeing-Eye - since at times I do not see very well.
And finding an Organization that covers all of this had been a
tremendous task to a point I had ...
:giveup:
Guide Dog, and then another 3 months to work with
the Hearing Impaired / Deaf Owner - depending what
all is involved (if there's babies, children, etc - additional
factors involved). Hearing Guide Dogs work 24/7/365
days a year; they never have any breaks at all. Always
on the alert and ready. I had been on 3 major news which
I still have it all on VHS.
In addition, one of my Hearing Guide Dogs; no one had
trained her - and back then there was "no such thing as
'Seizure Response' dogs. But she was very unique; and
no one could figure her out. She could be in another
room and would be able to know when I would have a
seizure and she would be that quick! She was truly
amazing! However her life span was cut short due to
health reasons.
I learned from my Neurologist years ago, that people
with Epilepsy do have an odor sometimes when they
have seizures so it was most highly likely she responded
to it because she reacted to it. But she would make
sure I was in a safe position, even pouncing on me
to the chair, couch, or even floor. If I had already had
a seizure, she would push me somehow, and curl up
in a ball to keep me warm and would not allow anyone
near me (except family members). She nearly became
"disqualified" when the paramedics were trying to treat
me; she was that protective.
We miss her sorely, she was so special to us. She did
her work and beyond! She did so much that it was
amazing, even my son, he remembers a lot of what
she had did and done.
While true the White Samoyed Huskies are work dogs;
but I was peeved at times because people were spoiling
her! And that was a "No-No!" ~ but at one Christmas
Time; when the Grocery Store (Jewel Osco, which later
became Skaggs Albertson's - then they dropped it down
to Albertsons), the employees pitched in and gave her
a huge Christmas stocking just LOADED with Doggie Goodies
Galore. I was peeved! But of course, she would not allow
me to "touch her pressie", insisted on dragging that thing
to the car (it was hilarious watching her), and she would
not even let me put it in the trunk either!
:?
Instead, insisted on having it in the backseat WITH HER!
She let everyone know that was HERS! ALLLLLLL HERS!
And I even went to the butcher (we had one back then,
but since he passed away, that store is long gone), and
I would get after him all the time ... when I wasn't looking,
they always had the "GOOD BONE" waiting for her. And
what do I get? Huge Grins from the Butcher.... hahahaha,
NOT! She would walk out of the store with the big bone
in her mouth as proud as she can be!
Yup, that dog was spoiled! But she did her job so well and
beyond. Both my son and I cry once in awhile when we
look at the album. I had two Hearing Guide Dogs - one was
the older German Long Haired Shepherd; and he was par
excellence.
Both of my dogs had sponsors. Unfortunately, after my 2nd
one passed away, I had a major Sponsor, but the Organization
was supposed to replace the one we had; but they went under.
I had been trying to find another one for years...
Been on waiting list after waiting list - then when following up,
only to find out, I didn't exist anymore. My Physicians grew tired
of having to fill out forms.
Today, I need a "Everything Service Dog" - Hearing, Assistance,
Seizure, and Seeing-Eye - since at times I do not see very well.
And finding an Organization that covers all of this had been a
tremendous task to a point I had ...
:giveup:
Ruth
New
- Messages
- 3,025
- Reaction score
- 0
- Points
- 0
Brain
That is interesting that we have an odor when we are about to have a seizure. I did not know that before. Another friend of mine has Bouvier dogs. One of hers did not have to be trained to be a seizure dog. Just knew when she was going to have a seizure.
Hi IMgood1
That is the problem, I cannot handle the work and responsibility of a seizure dog right now. I find it interesting though. I want to know as much as I can about it.
That is interesting that we have an odor when we are about to have a seizure. I did not know that before. Another friend of mine has Bouvier dogs. One of hers did not have to be trained to be a seizure dog. Just knew when she was going to have a seizure.
Hi IMgood1
That is the problem, I cannot handle the work and responsibility of a seizure dog right now. I find it interesting though. I want to know as much as I can about it.
dfwtexas
New
- Messages
- 980
- Reaction score
- 0
- Points
- 0
I had a situation last week where I had just my aura, no seizure. That was a first. I was home alone, well, not alone, had my 2 dogs with me. Prior to my aura, the both got up on the couch. Rosie laid across my lap and Belle laid down next to my side, so I was cushioned by furry children. It's not usually for them to do that, but it is rare that the both do it at the same time. Knowing this about the odor thing, I wonder if they sensed it. That is very interesting news.
I have heard about odor thing with cancer patients and dogs before.
I have heard about odor thing with cancer patients and dogs before.
Ruth
New
- Messages
- 3,025
- Reaction score
- 0
- Points
- 0
Hi jgbmartin
Dogs are very sensitive to our needs. I did not know that we emit and odor to the dogs. I use to have dogs. They were not sensitive to my seizures. Too bad!! I cannot take care of dogs like I did when I was younger. It would be great to have a seizure dog now that they are here.
Dogs are very sensitive to our needs. I did not know that we emit and odor to the dogs. I use to have dogs. They were not sensitive to my seizures. Too bad!! I cannot take care of dogs like I did when I was younger. It would be great to have a seizure dog now that they are here.
- Messages
- 3,450
- Reaction score
- 2
- Points
- 0
Odor Issues in Epilepsy prior to seizure
Olfactory dysfunction in temporal lobe epilepsy: A case of ictus-related parosmia
An Abstract (emphasis are mine)
This may be the very possibility factor right
there - the trigger issue. But even my ex-hubby,
son, and even Medical Doctors had remarked they
could "smell" an odor just before the seizure. I
am unsure specifically in what they are in reference
to that. I have not really done a research in this
area - but I did do a quick look up in this area - and
it seems that it very well might be T L E / M T L E issue?
Olfactory dysfunction in temporal lobe epilepsy: A case of ictus-related parosmia
An Abstract (emphasis are mine)
This may be the very possibility factor right
there - the trigger issue. But even my ex-hubby,
son, and even Medical Doctors had remarked they
could "smell" an odor just before the seizure. I
am unsure specifically in what they are in reference
to that. I have not really done a research in this
area - but I did do a quick look up in this area - and
it seems that it very well might be T L E / M T L E issue?
Ruth
New
- Messages
- 3,025
- Reaction score
- 0
- Points
- 0
Hi Brain
Thank you very much for the information. Where I live, once in a while, the same problem happens just before a person dies. The nurses and doctors have to put on gas masks because the odor is so bad. I wonder if the person was having seizures before they died. One person, I remember had cancer. The family sent her to the hospital via the ambulance. It was not until she reached the hospital that the odor was so bad. They wondered what she died of besides her cancer. They did not want to get close enough to find out.
Is there the possibility that the odor is caused in other people with other illnesses?
Thank you very much for the information. Where I live, once in a while, the same problem happens just before a person dies. The nurses and doctors have to put on gas masks because the odor is so bad. I wonder if the person was having seizures before they died. One person, I remember had cancer. The family sent her to the hospital via the ambulance. It was not until she reached the hospital that the odor was so bad. They wondered what she died of besides her cancer. They did not want to get close enough to find out.
Is there the possibility that the odor is caused in other people with other illnesses?
- Messages
- 3,450
- Reaction score
- 2
- Points
- 0
Correct; my Mother in Law had cancer, and I had
to wear a surgical mask during her last stages,
but had to keep our baby son in another room.
And yes there are illnesses that are even contagious
and not just odor-emitting.
I don't even WANT to go there or into it ...
it's just so sad ...
I think the dogs also respond to the disturbance in the electrical field around us as well. My dog was sensitive to lightening as well. My first experience with a seizure alert from a dog was my husbands guide dog who broke a command while we were out walking one day to alert me to a seizure coming on. I won't discount the odor, but he was at least six feet away from me outside. A dogs nose can smell things that are a total mystery to us. After that he continued to alert me to my seizures. That is when I went searching for my own dog. Since then, we had 2 of my husbands 4 guide dogs who could seizure alert. I'm told that either the dogs can or they can't, then you teach them what to do when they sense the seizure coming on. Thus the "alert/response". This is how the director of the program I got my dog from described it to me. I really could talk about dogs all day. They are some of my favorite people. Guide dogs and other working dogs are the best.