I am trying to raise money to pay for the cost of buying a seizure dog to help me live my life more independently. I was diagnosed with intractable epilepsy at the age of 16 and have lost a job, had to quit college twice, move 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 my grand-mal seizures don’t come that often, the frequency has started to increase since 2006. I suffer from absence, simple partial, myoclonic and complex partial seizures daily. So please help me achieve the independence and security I desire and to have a lifelong companion.
A seizure alert dog will also be able to lead me out of danger if I am having a seizure while running or riding my bike. These are things I love to do, but now have a fear of doing. There is no guarantee that any dog will be able to detect my seizures in advance, but many dogs do. I hope this happens for me.
I was sixteen when I had my first seizure while driving home from New Mexico with my parents. I suffered a life threatening tonic-clonic (grand-mal) seizure in the car that lasted 12 minutes. From that day forward I have felt different from everyone else because I have epilepsy. We learned from witnessing the seizure that I had actually been suffering from epilepsy all of my life. For some reason the grand-mal either started at that time or was just never seen.
Over the next couple of years I had several more tonic-clonic seizures that resulted in breaking both of my mother’s arms as she attempted to brace me during a seizure. I am no stranger to injuries either. I have had to undergo two back surgeries related to my seizure activity. I have always lived in fear of having another seizure.
I have taken as many as 20 pills a day to control my seizures and am currently taking 14 anti-convulsive pills each day and I still suffer from daily seizures. I talked to a Neurosurgeon about the possibility of removing the affected area from my brain. The surgery cannot be performed due to the type of epilepsy I have. As an adult I’ve always wanted to have my independence without having my family constantly worrying about my whereabouts and to give my family the freedom to enjoy their lives without worrying about me. I want to be able to bathe alone, ride my bike, travel freely, and to live independently. A Seizure Alert/Response dog will give me the independence I want.
I am no longer controlled by medication for my seizures. I am suffering from four different seizure activities going on; sometimes close to a hundred in a single day during a really bad spell.
Of course none of them are as bad as the convulsive tonic-clonic (grand-mal) type I’ve had since childhood, but they are very debilitating for me. They include absence (petit-mal) seizures, blackouts lasting various lengths of time from milliseconds to several seconds; complex partial (focal) seizures and myoclonic seizures with speech difficulties, dizziness, rapid chills accompanied by an extreme fear of pending danger or death, and peculiar tastes and smells.
My medications cause nausea, tremors, slow word retrieval from my brain, blurred vision, drowsiness, raspy voice and cough, frequent headaches, coordination problems, hair loss, weight gain, depression and anxiety to name a few. And now they are not preventing the convulsive type that puts me into an unconscious state. Sadly, I don't get any warning that a grand-mal seizure is coming on so I just collapse where I am standing, walking or riding my bike. My doctors have tried every medication that is available, but none of them are working completely now. I am on three different drugs and a total of fourteen anti-convulsive pills each day.
Now my doctor is considering adding another drug. I am going to have minor surgery to implant a VNS (Vegus Nerve Stimulator) which may reduce some of my seizure activity. (It's similar to a pacemaker implant that stimulates the brain instead of the heart.)
There is a good chance that a seizure alert dog may be able to help me. There are a few organizations that provide seizure sensitive dogs to people with epilepsy; they also protect them while waiting for assistance and provide companionship during that difficult wait. But first I'd like to tell you what I have been doing to earn enough money to get my dog. I am making and selling lavender ribbons. I am also selling wristbands and key chains that I designed. The wristbands and key chains have a slogan on them that I created and I will put the proceeds toward my dog.
Update (April 2010): I have made a decision and consulted with my doctor about it. I do not want to be taking 4 different medications to control my epilepsy (the damage to my body is too great). I have made the decision to come off of Depakote ER and Zonagran. At the same time we will be increasing the dose of Lamictal and Topamax to attempt to control the seizures.
The meaning behind the slogan is as follows: (LEAD) - Learn Educate Advocate and Donate the way to epilepsy awareness, this is the slogan that I created.
L Learn about Epilepsy
E Educate others about Epilepsy
A Advocate for Epilepsy
D Donate time and/or money for Epilepsy
The colors have meaning too. They are:
Purple (lavender) is the color for Epilepsy
Yellow is the international color for Friendship
White is the color of being 'Seizure Free'
The prices for these items are:
Wristbands $3.00
Key chains $3.00
So now you know a little more about what's going on in my life. I have a great deal of enthusiasm for the cause; I look forward to sharing the experience with you. I have met a lot of people with epilepsy around the world and I continue making many new friends.
If you or anyone you know would like to make a small donation, you can do so securely at my blog located at: http://epilepcology.blogspot.com/or by calling me. Thanks for taking the time to read this information.
CALL DAVID JULIAN (CELL PHONE) 714-615-1197
