Epilepsy Disabled Man Seeks Government Grant Money For Seizure Alert Dog
by David Julian
(Montebello, California, USA)
I am trying to raise $18,000 to pay for the cost of training a seizure dog, to help live my life independently.
I have lost a job, had to quit college twice, and moved back home several times (leaving my daughter across the country with her mother).
With countless trips to the emergency room, extended stays in the hospital and almost 26 years of fighting this battle, we realized how important a seizure alert dog is for me.
While grand-mal seizures don't come that often, I suffer from daily petit-mal and complex partial seizures weekly. So please help me to achieve the independence I need.
My battle with epilepsy began when I was sixteen. I was on vacation (the summer before my senior year in high school) in Blythe, California driving home from New Mexico. In the car, I had a massive grand-mal seizure, which lasted 12 minutes.
I woke up in the hospital two days later not knowing what had happened or where I was. I was as scared as I ever was and I didn't know why I hurt so badly. I was so confused. I would want to start talking but then I would pass out again because I was so exhausted.
So I left the hospital on the usual (Dilantin) and started the drive home to Santa Ana, California. We were all on edge the entire way home (I was so sore and tired still).
I can still remember yelling at my parents, "My life is ruined now; it's over." How little did I know that this journey with epilepsy had just begun?
Over the next few days I had phone calls and people wanting to visit me and to this day I can remember the look on each one of their faces when they found out that I had EPILEPSY.
The stigma (I call it uneducated ignorance) that is attached to epilepsy is nothing short of, and I use the word loosely, AMAZING!!!
As you can imagine my mom was freaking out so to speak as to why her son had a seizure. NO, I WASN'T USING DRUGS. Yes, they actually asked that several times. Everyone wanted to know "what was wrong with David."
I have done I think every test that can be performed, and been hospitalized more times than I care to remember. And good grief … I've had so much blood taken I could fill a swimming pool.
At this point I have been on or tried to take almost every seizure drug approved by the FDA. If the combination that I'm on now doesn't stop the seizures, I am out of options!
I have had quite a few grand-mal seizures during the course of my life. They always seem to cause some type of catastrophic failure in my life... but life goes on!!
At sixteen, I was issued a driver's license and I drove for a while. I was so excited to get my license. I always felt different from the other kids because I had epilepsy. I always felt like I had to prove something.
With the license, I had something like all the other teenagers. I felt like I belonged. This was short-lived because I had another seizure and at that time the DMV suspended my license for a year and a half.
During my senior year of school, I was afraid to tell anyone that I had epilepsy except for my best friend Sean (who always had my back) and never said a word to anyone about my seizures. He would always "watch out" for me whenever we would go someplace. I knew that I could count on him.
We had gone to see every neurologist, doctor, and specialists of all kinds. We went from Orange County to L.A. County to San Diego County and we reached out to every organization that we could find (Epilepsy Foundation etc.) We didn't know anything about epilepsy and had to learn all we could.
I ended up going to see a holistic doctor in Santa Monica for treatments to see if there was a chemical imbalance. After a while my mother and I were driving home and I had a seizure in the car. I pinned her wrists in the steering wheel and broke both of them.
My mother has been my biggest advocate, my helper and my friend (above being my mother) with my epilepsy. I don't know what I would have done without her. She is still the first one I look around for and want after I have a seizure. She is the only one in my life that has shared every detail and been involved in every aspect of my epilepsy.
When I was in my early twenties, I was working at John Wayne airport fueling planes. I was about ready to get inside of a 5,000 gallon jet fuel truck and head to the commercial ramp when suddenly I went into a seizure.
My muscles tightened, my arms curved to the left and my foot went all the way down on the gas pedal. I crashed the van into the side of a private jet, which knocked me towards the runway right in the path of a landing DC-9.
I crossed the commercial runway, then the smaller runway, hitting a helicopter that was on the tarmac, and finally crashing into a light pole. As you might have guessed, this ended my career at the airport... and my license was suspended AGAIN!
I slowly fell into a depression without even realizing it. I was withdrawing from the world and feeling hopeless inside. I was afraid to tell others how I felt. I felt trapped in a corner.
Obviously I got through that time of my life. I finally met my first (and only) epileptologist who was able to actually diagnose and treat my seizures by getting me on the correct medicines. I remained seizure free for almost 12 years.
I met my wife (now ex-wife) and I moved back to New Jersey to start my family. When my daughter was three, we decided to come out to California for a visit. While on the plane my daughter had a seizure. It was the single most gut-wrenching experience of my life.
We had to make an emergency landing in Ohio and we spent a week at Children's Hospital of Ohio, not the vacation we had planned. My daughter has had a total of three seizures in a year and no more, thank God! She is perfect, and is on no medications. They don't know what caused it.
It is not easy living with epilepsy, but I would do it a thousand times over if I could take this memory away from my daughter. I have a fear that someday she will have another seizure.
In July of 2006 I had a seizure while at work. They called it a break thru seizure and increased my medicine. Almost exactly a year later I had another seizure and I changed medicines again, trying Keppra this time. It seemed to be a miracle drug for me. I was so happy and with hardly any of the side effects that I had been dealing with for years.
A month later I had another seizure and then another, so off of that I came and started another regimen. The last seizure that I had that month and a half or so was in November of 2007.
My mom flew back to NJ to be with me and we had Thanksgiving together at Boston Market. That was a first EVER! Things seemed to stabilize and she left to go home for Christmas.
The big life-altering event was January 2007 outside a church in New Jersey where I was picking up my daughter for her overnight stay with me. It was snowing so I had started the truck to warm it up and walked over to get her when down I went with another seizure.
This time was no different, as always landing on my knees and falling on my face, leaving me with three permanent scars. I was "beat up" as usual from the fall and scraping, bruising and sprains. I went into the hospital and stayed there for testing and medication changes for three and a half weeks.
My mom flew back again to help me with things and be my support. I lost my job during this. We decided that I had to go home for a couple of weeks and be with family. Since my divorce I really didn't have any kind of support structure in NJ.
I decided that I needed to move back home with family, so inside of two weeks we packed, sold, gave away and moved me back home to California. Yes, I'm NOT going to get in to this too long of story but it was and is the right decision.
I had to leave my daughter for a lot of reasons. It is better (and worse) this way but it is the way it has to be and that is ALL I have to say about this subject (period).
I had been seizure free again for a little over two years when one day while riding my bike to school I had a seizure. I can remember crossing the street then waking up in the hospital hurting and exhausted. I just couldn't believe that I had another seizure.
I suffered a mild concussion even though I was wearing my helmet. Since then all of my seizures have increased with the exception of the grand-mal (to my knowledge). The petit-mal, complex partial, absence seizures are with me now more than they ever were.
With all of this I made the very hard but smart decision for the safety of YOU in mind! I will never, ever get behind the wheel again no matter how hard this makes my life or what I will miss out on. I am not willing to put my own selfish needs before the lives of other people… Life I have learned is too precious!!
I have had to learn to go by other people's schedules. I am not one to ask for people's pity or ask for help from someone. I consider myself a strong, independent person. I want to take care of myself.
Being able to have the freedom to get into a car and choose where you want to go, how you want to go is something we all take for granted. This is a freedom that I no longer enjoy and I miss it terribly.
With the help of my family and friends, we determined that I needed a seizure alert dog. The highly specialized dog I need is a West German Show Line German Shepherd from "Seizure Alert Dogs for Life" and it is too much for me to afford.
I need a grant to assist with the $18,000 cost of the dog. If there is anyone that can help us with such a grant I would really appreciate it. Thank you, David Julian.