Epilepsy, and the Service Dog
I have epilepsy. Adult onset epilepsy, and suffer from grand-mal,petit-mal, and absence seizures. I'm 31 years old, and have had epilepsy for 6 years now, it started right after I had total hysterectomy at the age of 25.
Fast forward to after I was officially diagnosed. I was finally put on meds, and they helped. However, I was still having my petit mal seizures a lot,and absence seizures daily, several times a day. My grand mal seizures were cut down to about one every 2 weeks. Well, as a general rule, I get an "aura" before I have a grand mal. But there are also times, where I do not at all. Well one day, I was cooking something in the oven (something I rarely do..not much of a cook). I remember opening the oven to flip the chicken that was cooking. The next thing I remember, is waking up on the kitchen floor, a bloody mess. My husband called the ambulance, blah,blah,blah, some minor injuries, fine. Still being new to all this, it quickly got to the point where I was no longer comfortable leaving the house, even for little things like grocery shopping and such. I ironically, had never driven, never gotten a drivers license in my life prior to the epilepsy anyway, so not being able to drive was nothing new.
Meanwhile, my new dog, a Miniature Pinscher named Josephine, was something special right from the moment I'd met her. She was 10 weeks old when we got her, it was right before I developed the epilepsy. She and I were close, and it was a connection like I had not ever had with any of pets before, it was beyond love.
Well, I was noticing that she was reacting oddly before I would have a seizure. At first I did not make the connection, I was still getting used to the epilepsy in general as it was. But more and more it was getting hard to ignore how Josephine would get upset, hang all over me, and basically be restless right before I'd have a seizure, others were noticing too. So, I looked into it a bit. Could Josephine be telling me before I having a seizure, and if so, could she become a service dog?
The answer was yes. She has a unique connection to me to begin with. Unlike most dogs of her breed, she's quite laid back, even lazy. I also have 3 other min pins, a Pekingese, Border Collie, Chihuahua mix, and a Saint Bernard (along with a slew of other pets). All my min pins are racing around all the time, high energy, just like is typical for their breed (they are a toy breed, but are also terriers, unlike what many think that Min Pins are simply smaller versions of Doberman Pinschers, which is not the case). So, I did my research. I learned A LOT!
The science behind seizure alert dogs is somewhat unclear. But, scientists think it's the smell that the brain gives off, right before a seizure is going to occur. Chemical changes in the brain is what is believed to be the cause of a seizure. When these chemical changes occur, a seizure will follow. It can be second, minutes, or more. Think of it a bit like a thunderstorm. You see the lightening, and know the thunder is about to follow. But depending upon the distance, the thunder can come right on top, immediately during/after you see the lightening, or it can take several seconds, and you're waiting to hear the thunder. Similarly, a grand mal seizure is like a storm in your brain. Now when these chemical changes occur in the brain before a seizure, it is believed that some dogs can actually smell that chemical change. We know some dogs can smell out cancer in a person, they can smell drugs, track people by scent alone. Well did you know that they can also smell many other types of chemical and blood changes in your body? There are diabetes dogs, dogs who alert their handler when they smell a severe rise or drop in the blood sugar in their blood. Cool eh?! So a seizure alert dog, can actually smell that chemical change in it's handlers brain, and warn their owner to this oncoming seizure. My Josephine always warns me anywhere from 2 minutes or so, up to 15 minutes before I have a seizure.
So, after my research I also learned that service dogs do NOT require any certification or training whatsoever, in order to be someones service dog. It's true. The Americans with Disabilities Act (ADA), states that in this country, service dogs work on the honors system. Meaning that basically, if you say it's a service dog, then it's a service dog. HOWEVER, this only remains this way until it needs reform because of people abusing the system. People who just feel like having their dogs with them everywhere they go, so they say the dog is service dog, when it's not. And with newer types of service dogs around these days, they aren't just for the the blind, so using a disease like epilepsy, or diabetes, a condition that is not readily seen on a person...who's going to ask for proof of your condition...no one would be any the wiser. Well that's a problem for many of us out there with specialty service dogs. People who abuse this right, are potentially harming people like myself, who legitimately have a disease, need a service dog for that, and have one that has not gone though "formal" training.
You see, when it comes certain types of service dogs, like a seizure alert dog, it's not the type of thing where most dogs who are trained for it, can perform this service for their handler. Like a seeing eye dog for instance. While not every dog that goes into training to become a seeing eye dog, will make it through and become a service dog, the majority will. But a seizure alert dog, not the case. For every 100 dogs that go through training to become a seizure alert dog, only 4 will make it through, and actually become a seizure alert service dog. Why? The reason is that not every dog can either smell or sense this chemical change in the brain, plain and simple. I have 7 dogs, and of those, only one can tell when I'm about to have a seizure, and that's my Josephine. It comes down to this; Some dogs can sense/smell it, some dogs...cannot.
There are skeptics out there. There are even doctors who insist that a dog can not accurately detect an oncoming seizure in a person. Well, that's an opinion that is respected, but largely untrue. Untrue for those of us who depend on our service dogs, who have literally had their life saved by their seizure alert dog. Seizures in and of themselves, aren't what can potentially kill someone. It's the injuries that occur BECAUSE of the seizure, that result in death. Most notably falling, be it in the shower, or anywhere that can cause severe head trauma, if one were to fall flat on their face/head. Then there's car accidents. Every state has different laws on people with epilepsy and other seizure disorders, being able to drive. For instance, where I live, you must be seizure free for 6 months, in order to get, or be given back your license to drive. But also in my state, doctors are not required to report when someone has a seizure and seeks medical help, or had one while under medical care, to the DMV. My neighboring state on the other hand, says one year with no seizures, and doctors are required under law to report to the DMV, when someone has a verified seizure. It different from state to state. So often,people are driving despite the fact that they still have active seizures, or in many cases, have never had one in their life, and end up having their first seizure, in a car while driving. That...sucks. So, losing control of ones car, when they have an "unannounced" seizure, has in many cases...led to a bad accident, and deaths.
So, back to Josephine and I. After taking time to do the research, and "test" Josephine out with her abilities to let me know before a seizure was about to happen, and her behavior in public, basic obedience, etc., I was able to determine that yes, she never fails to warn me before I have a seizure. So, I spoke with my doctor, and some experts and others with seizure alert dogs, and decided to have Josephine become my service dog. I special ordered her service dog vest, complete with her informational patches. Josephine was a well behaved dog to begin with. But when she puts that vest on, she knows it's time to work, and work she does! I can now go out more often, just to do simple things like grocery shopping or to church, etc. There have been a couple times where, while out shopping or what have you, she has warned me that a seizure was coming. At that point I will find a seat, or even lie down right then and there (hey,I may look like a total freak, but it's better than resulting in major injuries, some of which I have seen, are devastating and cause permanent damage to the person).
When Josephine senses a seizure is coming, she stop in tracks, and start to paw at me, at my pants (she's short), and generally just get upset. At that point, when I kneel down, or sit down, she actually puts her "arms" around my neck, like a hug, and will not release until I lye down. At that point, she will stay right on top of me, and she's the first face I see when I come to. I do not have a medicine that I can take when an oncoming seizure is sensed, in order to stop it, or lessen the severity. However my regular epilepsy medication Keppra (which I love, because I have no side effects for me) ,is in a vial attached to her collar. This has come in handy, most recently during a plane trip, whereas all travelers know, flights are delayed or cancelled, things come up, airlines make mistakes, etc, and because she has my meds right around her neck, I can take them at my regular intervals needed to keep my seizures in check.
Josephine is very protective of me. She loves the family, and is generally good with most people. However, when out in public, her job is to focus solely on me. Many children are enthralled at seeing a dog in the store. They don't always understand what a service dog is, and in many cases are not old enough to read. Josephine's vest has a patch that says "Service dog", one that says "seizure alert",and another that says "I am working, please to not pet". Her vest is a bright fluorescent orange (and she also has an equally bright pink one), and the patches are in bold black and white. I do enjoy educating people on service dogs, and that there's more than just seeing eye dogs out there as service dogs. People will often stop me in the grocery store, at church, even at the hospital, and ask about her and what she does. And I do enjoy being able to educate others who did not know dogs could perform such a task. On the other hand, I have found that there are also some people, and some of them are parents, who chose to ignore her vest, and come running up, or allow their child to come running up to her to pet her. This breaks her concentration on me, and can spook her for a moment. Most parents will simply tell their children "no sweetie, you can't pet that dog, she's a working dog". But I am surprised at the amount of adults who come over, see the dog, read the vest, and tell their children "honey, look at the doggy, go up and pet her". Yes, there are many parents who have said just that to their children. It's not the child's fault, it's the adults that disregard what it says right on her vest. She will back away from someone to comes up to pet her, if she does not know them, and I have actually on a couple of occasions had older kids, in their early teens or so, that will actually chase her to get to pet her, and she gets me tangled up in her leash, and I have tripped and fallen. Those are the people who I must admit annoy me. But those people are very few and far between. Most people are very respectful, and simply ask about her and what she does. I have a special place in my heart for the elderly, and I'll at times get an elderly person come up, and ask to pet her, and I'm more than happy to oblige! Asking is the key here. Most people take no issue with a service dog being in a store, or at a restaurant. For the past 3 years that she has been my active service dog, I have had only 3 incidences where people are disgusted by the thought of a dog in the grocery store, or at a shopping center, and come up to me, and actually yelled at me, telling me I should not be allowed to have my service dog in there, and one of them then took it to the manager of the market, who in turn came and apologized to me (it was an employee of the store). And yes, that's frustrating, but again, those people are few and far between. The Americans with Disabilities Act states that a service dog is allowed in any public area where a person would be allowed, with the only exception being in where food is being prepared (so like a restaurants kitchen). Not everyone understands this, and I'm happy to be someone who can help educate, and spread the word about service dogs, and their many uses. When you have a service for a disability like mine,such as epilepsy, diabetes, etc, many people take issue with it because we don't look "disabled" We are not blind, or in a wheelchair. And it's important to note that for people like us, our service dogs are just as important to us, as they are to a blind person.
In fact, there are some seizure alert dogs who are even more vital to their handler. For example, a case where child has severe epilepsy, and it is not well controlled despite their medications. There's a nerve called the "the vegus nerve" , a nerve in the neck that directly connects to different parts of the brain. Some drug-resistant epilepsy or other seizure disorder patients, will have a "Vagus nerve stimulator" or VNS,implanted into their neck. It sends electrical waves to the brain, and most of the time, can stop altogether, or at least lessen the severity and duration of a seizure. And some seizure alert service dogs, have a magnet built in to their collars. They not only sense an oncoming seizure, but are trained to then run their neck, where the magnet on the collar is attached, over the vagus nerve stimulator implanted in the handlers neck. It then sends an electrical impulse to the brain, and stops their seizure altogether, or lessens the duration and severity. Without a specialty service dog like these, some epilepsy sufferers would endure many, many more seizures, in some patients as often 50-60 times A DAY! Granted, those are more extreme cases, but they are very real, and these patients, who are often children, depend largely on there service dogs to save their life every single day.
Josephine (we also call her Jo-Jo,or Josie), has on many occasions saved my life. She never ever fails to warn me of an oncoming seizure. Sometimes I get an aura, and know one is coming myself, and she will sense it at the same time I do, or even earlier. But sometimes I do not get an aura, and have no clue one is coming, like my "kitchen incident". Josephine wears her special vest, has her collar tags that states she's a service dog, has her and my information, and has an ID card I always carry with me. Josephine doesn't have any formal training for the job she does, and often times that's the case with seizure alert dogs. Sensing the oncoming seizure, is not something you can "train" a dog to do. They either do, or they don't. Basic obedience training may be necessary for certain breeds, just certain dogs in general, so that they can perform the basic tasks and obey in public and around all different types, ages and amounts of people. I have a lot of dogs, but again, there's only one that senses my seizures, my Josephine. Over the past few years, she has made herself known in the small community we live in. The employees at the grocery store know her by name, and always take a moment to say hello to her. She has been on our local news during "service dog appreciation" week. And when I go to my sons school for events or to volunteer (which I can now do again, feeling safe now that I have my dog that will sense my seizures coming, and warn me of them), the kids all recognize her, and enjoy seeing her around their school, and participating in school functions with me. My son is also very close to Jo-Jo, and has told me and others on many occasions that he's no longer scared when we go out somewhere, now that Josephine is with us, because he knows Josephine will let me know BEFORE I have a seizure, so I can respond accordingly. In fact, my very first grand mal seizure was in the presence of my son, who at the time was barley 6 years old. Luckily my parents were also there, as well as a passerby who's daughter also had seizures, and was able to get help ,and let my scared, panicked and confused family know that I was having seizure, what to do, and not to get upset. But you can imagine the impression that leaves upon a young child seeing that happen to his mother, for the first time, with no warning. Jo-Jo also has a special bond with my sister, who though is nearly 5 years younger than me, is like my identical twin. We share similar attitudes, feelings, and are close, so it's easy to see why.
Back to determining if a dog can sense an oncoming seizure or not. I have met several people, while out at the mall, or the grocery store, who also have epilepsy, or a seizure disorder, and report that they've always noticed that their dog seems to sense an oncoming seizure in them. I have always encouraged those with these experiences, to look into it further, and work on honing their dogs natural ability to sense these seizures, so that they can detect it before every or most seizures they have. The fact is, having a seizure alert service dog is never fail-proof. Just like anyone or anything else in life, they are not perfect, and sometimes "make mistakes". And by that I mean, sometimes, they may not sense/smell an oncoming seizure. This is an important thing to remember, so as not to lull epileptics and those with other types seizure disorders, into a false sense of security. Of course I feel a thousand times safer and more secure with Josephine with me, as does my family. But I always must be aware that I could have a seizure, that she will not detect. So making sure I always have my medical alert bracelet on, a medical information card in my purse, and am extremely diligent in making sure I take my medication as my doctor prescribes, at all times.
But for me,so far, Jo-Jo has never failed to warn me to an oncoming seizure, since she became my official service dog. I could not be any luckier. Without her, I'd be hold up in my apartment, not out enjoying life, always in fear of when my seizure will happen. Josephine is not only an invaluable tool in the management of my epilepsy, but my best friend, my second half.
Now, as for dog size, breed/breed mix, I'll often get people saying "oh,I did not know that a small dog could be a service dog", or, "I thought only labs could be service dogs". This is a misconception some people have. The truth is, any breed, be it purebred, or mixed mutt, any size dog, from 8 lbs to 180 lbs, can be a service dog, and there are many of these small end extra large dogs out there as service dogs. We all typically think of Labradors, German Shepherds, and Golden Retrievers, when we think of service dog. This is in part because typically the types of service dogs we are more used to seeing, service dogs for the blind, are made up of these breeds, and there;s a reason for that. These breeds are among the smarter breeds, easiest to train breeds, have excellent temperaments and "people skills", and their size is conducive to leading a blind person. But, that doesn't mean any other breed or size of dog cannot be an excellent service dog, of any kind! I have my Min Pin, I've seen Saint Bernards, Chow-Chow's (typically NOT a breed that does well with strangers or the general public), Sheba Inu's, Chihuahuas, Pointers, Bichons, Pekinese, Border Collies, Greyhounds,and I even met a Puli that was a service dog (you know,the one with corded hair, looks like a mop). My personal experience with all different dog breeds is extensive, and I have a great knowledge of most all dog breeds, and their characteristics, temperaments, tenancies, looks and traditional uses. Dogs are a great passion of mine. So sure..a Chow-Chow or Akita as a service dog could seem odd. They tend to connect to only one person, and have been known to be aggressive to everyone else, and can be more difficult to train, and stubborn. Those and many other breeds (I'm not picking on Chow's, I used to own one, and love them). But that doesn't mean they cannot make an excellent service dog. It's true, some dogs are naturally more inclined to have certain attributes that help make them a certain type of service dog. Min Pins have an excellent sense of smell. Traditionally bred as "ratters", they can sniff out almost anything. One reason why I have seen other Min Pins, besides my own, as either a diabetic alert dog, or seizure alert dog. But here again, I also have 3 other min pins of my own, and none of them have shown any aptitude for detecting an oncoming seizure. That being said, there's clearly no hard and fast rule as to which dog is better at what type service function. And lest I forget to mention, dogs do not have the monopoly in the service animal department! For the most part, we accept dogs to be service animals for people. However, the ADA also recognizes miniature horses as service animals, as well.
These are many different ways to go about looking into getting a seizure alert service dog. Do your research, don't stop at one or two websites or people. And keep in mind, not every doctor is thrilled with the seizure alert service dog concept. Most are however. So feel free to speak with more than one doctor about the possibility of obtaining a service dog for your epilepsy, if your doctor isn't fully convinced. I can say both my neurologist and epileptologist know the benefits of these service dogs, and see the results, and how invaluable these dogs really are!
Also, there are people abuse this privilege/ability to be safer, and live better. These types of people are selfish, insensitive and have no regard for others. The law as it is now, does not require any type of certification for a dog to be a designated service dog, especially because of dogs like seizure alert dogs, where their ability to help their handler by sensing an oncoming seizure, is something that most dogs cannot be "trained" to do. And because of this, our service dogs are entitled to all the rights of traditional service dogs, which includes admittance to any public place, regardless of a stores owner/managers personal feelings on your service dog. They are allowed to ask two pertinent questions of you; "Is this dog a service dog?" , and, "What tasks does this service dog perform?" They cannot ask you to explain your disability/condition, they cannot ask for any paperwork or certification papers for your service dog. They cannot treat you differently, charge you more, or segregate you from everyone else, because of your service dog. And of course they cannot deny you access because of your service dog. For asking questions they aren't "allowed" to ask, they can face fines, and if they deny you access/entrance, they can be heavily fined, risk losing their licenseure to do business (this includes doctors), and it states they can also face jail time. A bit much? Perhaps, but there's a a reason for this. The same reason that it was wrong to tell blacks that they had to sit at the back of the bus a half-century ago. So, like many things in life, there are always those who take advantage of this, abuse it, and compromise their morals, so that they can have their four-legged friend with them wherever they go. These selfish people risk having this open policy on service dogs, amended or revoked if abused. And that hurt people who are truly disabled/have a medical condition that warrants a service dog. Believe it or not, there have been more reports lately, or people saying their dog is a service dog, producing some form of "doggy ID" (which means nothing), and claim they have diseases such as epilepsy, or diabetes, and say they need the dog. This is unconscionable. Often, it's people with very small dogs, like chihuahuas, etc. HOWEVER, keep in mind ANY breed of dog, and ANY size of dog, can be a legitimate, life saving service dog. My Josephine is a prime example. She's small, technically a toy breed (the thing is, she's a chub-a-lub, way spoiled, and wasn't the smallest-framed Min Pin to begin with). So, she's about 19 lbs, and comes to about my shins when she's standing. So you cannot always assume that someone with a small or toy breed service dog, is just a healthy person, looking to play Paris Hilton and carry their dog everywhere. And, the same for the opposite. A Saint Bernard, or Mastiff is equally capable of being a service dog. Most establishments and training facilities are legitimate and trustworthy, and provide the training of service dogs. However, be aware that there are a few unscrupulous "businesses", that don't do anything to train your dog, but just take your money. Be weary of ads for online certification of your dog, and other such things. Also, chose a training facility wisely, if that the route you chose to go. Most again, are legit. But, there are a few that claim they can "turn your dog into a seizure alert dog, or diabetic alert dog", but at the end of course, after they have your money and have not done service dog training, and have no real knowledge of how to hone a dogs natural ability to sense/smell these signals...will simply use the excuse of "hey, not every dog is cut out to be a service dog, and yours is not". Now while the statement it true (which is why they get away with it), they are actually in reality only there to take your money, and have no real knowledge of how to properly train, or hone the skills of dogs who may have a sense for alerting a person to a medical issue, but need more work. You aren't going to be able to take the family dog, and work at turning it into a seizure alert dog for yourself or you child/loved one, and expect positive results. Because,again...not all dogs can sense/smell these chemical changes in the brain that signal an oncoming seizure.Some can, some cannot.
That being said, below are just a few sites you can start with, if you want more info about a medical alert service dog. The first is the ADA website page on service animals. There's more more information on other pages on this site ,and it's an invaluable resource. The other sites are some places where you can get more info on service dogs, and applying for a service dog for yourself, or a loved one. Some have long waiting lists, others are very expensive (some as high as $50,000 to $60,000 dollars)! As a general rule, a "pre-trained" service dog, especially for small children needing a service dog, is a great way to go. And for people who have never even owned a dog, it's highly suggested and recommended. But again, your service dog doesn't necessarily need to have a formal training or certification, to be a full-fledged service dog! If you are noticing that your dog is alerting you to oncoming seizures, I encourage you to look into it more. Not every dog that can sense/smell an oncoming seizure, will be able to become a service dog, most notably because some dogs just cannot function in public, in the way a service dog needs to. Many times dogs will be able to detect an oncoming seizure, but be incredibly distracted when out and about. Or, be aggressive, or not have basic obedience down, etc. But like my Josephine,some can!
It's painfully obvious that my Josephine is the love of my life. She's not only invaluable to me in many ways, but also saves my life! She's like another part of me, and I shudder to think of the day when I won't have her anymore. In fact I lye awake at night worrying and crying about it, even though she's only nearly 5 years old. She could live to be 16 or 17 years old, but that's not nearly long enough for me. She's my baby, my partner, my indispensable friend and confidant. She's worth her weight in gold, and then some. When I get into bed each night, Josephine is right with me, like another appendage, crawls under the covers, gets comfortable, while always making sure that she is touching my body, nearly on top of me. It's a great feeling, ( though having to wake up in the middle of the night, freezing because she's hogged all the blankets, and me being relegated to very edge of the bed, nearly falling off, because somehow, my not even 20 lb dog, finds a way every night to take up an entire queen-sized bed...gets a bit old). But hey, it's a small, small price to pay for what she does for me each and every day, and I wouldn't have it any other way!
I do so love my Josephine Marie!
For those of you with service dogs,please feel free to join our service dog owners club on Facebook! Owners and trainers are welcome!
- ADA Business Brief: Service Animals
- Seizure-Alert Dogs Save Humans With Early Warnings
- Welcome to Canine Partners For Life
Canine Partners For Life trains and places service dogs with physically disabled individuals to help increase their independence and quality of life.
- service dogs, Guardian Angel Service Dogs, Inc. Home
Education, financial assistance, and hope for individuals in need of a service dog.
- 4 Paws for Ability Seizure Service Dogs
Meeting the needs of children with seizures means training a dog that is unique in what they do for each child. At 4 Paws we have no age requirement and believe fully in early intervention.