My Epilepsy Story: Why don't I just take medication?
Hi! My name is Alyson Kastenbauer, and I am 26 years old. I have battled drug-resistant temporal lobe epilepsy and a traumatic brain injury (TBI) since May 2014 following a car accident. During my accident, a part of the brain that primarily deals with auditory processing, known as the temporal lobe, was severely damaged on the left side. This damage triggered epileptic seizures, which is basically the misfiring or overfiring of neurons on the brain. My seizures ranged from staring off into space unresponsively, violent convulsions throughout my entire body, going rigid, and suddenly collapsing (and even collapsing out of chairs in the middle of restaurants). I went to multiple neurologists trying every anti-seizure drug that existed: Keppra, Lamictal, Depakote, Topamax, you name it. Each caused a reaction worse than the last ranging from hives to total loss of balance to the point where I could no longer walk. Over time, my seizures have grown more frequent to the point that I have up approximately 5 daily. Some are in my sleep, and some are while I’m awake. I have even tried alternative methods to control my epilepsy—CBD oil, the keto diet, etc. My seizures also come with high risk of SUDEP (Sudden Unexpected Death in Epilepsy) because the majority of them last over five minutes and continue back to back for hours sometimes. What makes this dangerous is 1) the risk of choking if I’m alone or no one finds me, 2) sudden, rapid increase in heart rate, and 3) the heart can temporarily slow, stop, and even fail (particularly during a state of status epilepticus).
To learn more about status epilepticus: https://www.epilepsy.com/learn/challenges-epilepsy/seizure-emergencies/status-epilepticus
To learn about epilepsy, seizure first aid, and SUDEP https://www.epilepsy.com/learn/about-epilepsy-basics and https://www.epilepsy.com/learn/early-death-and-sudep
The Life-Threatening Challenges of Refractory Epilepsy
I have flatlined and been resuscitated more times than I can count. I woke up terrified, unable to scream with a tube down my throat on three separate occasions (AKA I was intubated).
I’ve collapsed during seizures, slamming into furniture, resulting in stitches, black eyes, broken noses, scars. I have “come to” in handcuffs because police officers assumed I was just aggressive or on drugs and didn’t understand that handcuffing someone during an epileptic seizure can cause broken arms, fractured wrists, and dislocated shoulders…and of course I managed to fracture both wrists and dislocate both shoulders. I have seized simply standing or walking down the stairs and broken fingers, both wrists, both ankles, my left collarbone more than once during separate epileptic events.
To learn more about refractory epilepsy: https://www.epilepsy.com/learn/refractory-epilepsy-difficult-treat-seizures
And this is me whenever my seizures are NOT flaring up and/or sending me to the hospital in case in any of you were wondering:
The Disability Challenges of Adult Epilepsy
As you can probably guess, I’m unable to live independently. I’m even unable to drive until I can go 6 months seizure-free based on Georgia Law. I was fired from several jobs after my employer’s witnessed a seizure (or simply found out about my diagnosis). On the bright side, I finally found a university that is big on inclusiveness and accessibility at Georgia Southern. I only have 3 semesters left until I graduate and need to find a place on my own closer to the campus that has the graduate program for child psychology. As of right now though, completing my degree, having independence, and feeling safe in my own body is a pipe dream.
Light at the End of the Tunnel: PICK DAY October 18th!
On September 7th, my service puppy was born! He/she is a chocolate tuxedo colored Labradoodle (Labrador + Poodle mix). I have been working on getting a seizure response service dog for well over 3 years now, and with the help of the most compassionate, knowledgeable breeder for labradoodle and goldendoodle service dogs, I finally have a chance to live on my own, to finish my degree, to work in my own office, to drive. I am beyond excited, and I have been talking with service dog response and skills trainers for over 2-3 years. At the end on month, I get to choose the pup who will become my new companion and my miracle. I have chosen to do initial puppy and basic training through Happy Hounds Training locally, and then I plan to take my fur baby to the one of the best training services in the nation: Heart and Soul Dog Training in Central Florida.
How Can You Help?
& Where is the money from this fundraiser going?
Initially, I created this campaign for help in raising money required for epilepsy service dog training, but I've recently learned my medical bills are about to go up to an additional $8,000v (without insurance) or hopefully $1,200 with insurance. Thanks to my last 2 seizures, I currently have a torn/ruptured ACL, PCL, MCL (these are the ligaments that keep the knee and leg stable), and a torn meniscus in my left knee, which is requiring surgery to repair. The procedure is regenerative medicine based because some of the tissues, like the meniscus, cannot heal on their own. Insurance isn't guaranteed to cover all of the surgery costs, but without the procedure, my leg won't ever be stable enough to walk on again without crutches. This procedure will not only allow me to put weight on that leg again; it will allow me to run, bike, etc. The money donated here will primarily go to training costs, which will help in preventing another injury like this from happening again because one of the main skills the pup will learn is how to brace and support me when I collapse during a seizure. However, if I manage to reach over the $6500 goal, the rest will go towards this procedure.
At the beginning of the fundraiser, my family was still trying to scrape up enough money to purchase the labradoodle pup, but Casey @ CNR Farms surprised me with her extraordinary selflessness, kindness, and compassion when she called one night to tell me she intended to donate the pup to me! Thankfully, the additional $2500 cost of the pup is no longer an issue.
However, the reason why most people don’t follow through with getting a service dog is the cost because unfortunately, legit service dog response and assist skill training ranges anywhere from $4,500 to $25,000. The average cost of a trained service dog is actually $15,000-$30,000, but it can reach all the way up to $50,000.
I spoke with trainers across the country, explained my condition, and they all recommended the same trainer and the same program: Victoria Warfel at Heart and Soul Dog Training.
More about the Everything Program, Including Board & Train: https://heartsoulk9.com/service-dog-program
This program consists of service dog training, seizure response and skills, public access training (which allows me to take my pup with me in class, to work, in stores, etc.), and each level of certification required by the ADA. Heart & Soul's "Everything" seizure service dog training program is $6,500 alone, which means that I need to raise about $6,500 by April 1, 2021 in time for the next boarding and training slot by the time my little pup turns 6 months old in a month from then in May 2021. This program contains every epilepsy response, skill, and advanced off-leash training necessary for my dog to pass official certifications (which are included in the program) in order for me to legally take him in public, to class, and even to work. Trust me, seizures in the middle of class are not fun, and having a pup trained to sense them and warn me ahead of time gives me time to get somewhere safe, away from crowds, and could potentially provide enough time for me to take a medication that aborts a seizure before it spreads to every region of the brain.
To learn some of the basic things a seizure service dog can do to help someone before, during, and after a seizure, click here: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/seizure-dogs
Without this service dog, I'm honestly not sure how much longer I can survive multiple daily seizures. My parents are in their late 60s, and I realize this is too much to ask from them...not to mention I know that it has been traumatizing for my mother to find me unconscious, unresponsive, bleeding, and/or turning blue and to call 911, unsure if they can get to our house in time to restart my heart and get oxygen going back to my brain. I know everyone is going through a hard time right now emotionally, physically, and especially financially, but having a trained service dogs means that I never have to go to bed crying mid-panic attack wondering if I’m going to wake up in the morning EVER. AGAIN. It means that my pup will also be my protector through the guard and block skill—I will never again be in a vulnerable position when I’m unconscious to where someone could hurt me, which happened shortly after my move to Savannah and has been a major fear of mine since. It means that this pup will be able to warn me when a seizure is about to occur and give me time to get somewhere safe and on my side. It means that my pup will be able to alert others that I need help (and lead them to me) when I lose consciousness, so my mom (and no other human being) will ever have to find me with no pulse and blue lips ever again. It means less ER visits, no longer knowing the paramedics on a first-name basis, and saving hundreds of thousands in medical bills from the emergency department.
More benefits of having a seizure service dog: https://www.epilepsy.com/article/2014/11/how-service-animals-may-help-people-epilepsy
This dog and the appropriate service dog training can give me control over my life back along with peace of mind and independence that I haven't known for over six years. So, please, if you can donate anything, you would be helping to save my life…or at the very least, you would be saving me from another broken bone because they can also teach the pup to “brace” when I’m unsteady. I absolutely do not expect to get the full cost of training covered, but there is no way my family can afford the training and certification necessary for an epilepsy response dog, so every little bit that you can spare to donate towards this process helps.
Thank you for taking the time to read through all of this, and if you were able to make a donation, I appreciate it and you more than words can ever express! You can e-mail me, text me, or shoot me a message on Facebook if you have any questions. This service dog truly is a miracle, but it would be impossible for me to even have a chance at affording training if it weren't for those of you who choose to donate to this fundraiser.
- Sean Carroll
- Lisa Neville
- Nick Fornito