I had my first two seizures my freshman year in high school. The doctors believed them to be unrelated to each other. I suffered from daily headaches and was subsequently put on a high dose of Topapax to control the headaches. I stayed on this medication for a long time. During my therapy of Topamax my headaches improved and I didn't have anymore seizure. No EEGs were ever performed and no further investigations were sought related to my seizures.
I graduated high school and went to college. I graduated as a nurse in 2008 and started my career. In between then and now, I have been blessed with three beautiful children of my own, a handsome stepson, and a God given husband with the patience of a saint. My husbands name is Travis. Not only does he have everything that I have to deal with going on, he is also Active Duty United States Army.
I quit taking Topamax when I became pregnant with my last child and didn't restart therapy after he was born. I wanted to breastfeed him as long as possible and since I had never been given the diagnosis of epilepsy, I decided to bear the headaches versus formula feed.
While not taking Topamax I immediately started noticing my inability to pay attention or space out. My husband would complain that I wouldn't listen to him or that I would be in a fog. So I voiced my concerns with my doctor. They didn't do any tests. They told me I had ADD. They told me to take Concerta. It helped a little. It helped with the headaches some and it did help mildly with the inability to pay attention. But I still found myself unable to hear people at times when they were speaking to me. The doctor told me it would get better with time. It didn't, but I continued to work and stay as productive as possible.
Things finally caught up with me. I had been off my Topamax for a while. The seizures came back with a vengeance. I was rushed to a nearby hospital close to where I work with a group of fantastic neurologists. I was inpatient for nearly a week and had a multitude of tests ran. EEGs, spinal taps, EMGs, MRI, PT, OT, everything! Finally someone took the time to put all of the pieces together and look at the big picture.
A schwannoma was also found in my lumbar spine. It is under evaluation and it is being determined whether to remove it or not at this time.
My very first 30 minute EEG showed prominent seizure activity in my temporal lobe. Many of my seizures are complex partial but some of them are generalized. Regulation of my medication has been somewhat of a challenge but it is getting better. I have absent and complex partial seizures every day and generalized multiple times a week. I'm scared. My husband has to stay at home with me for now but he can't forever. I feel like all of independence has been taken away from me. I once had a thriving career where I was climbing the ladder of success and now I will be filing for disability soon and don't know when or if I will ever return to work.
Many people don't realize how common epilepsy is. 1 in 10 people will have some type of seizure in their lifetime, but 1 in 26 will be diagnosed with epilepsy. Most people know someone affected already.
Currently I see several neurologists and an epileptologist. An epileptologist is a neurologist who specializes in the treatment of epilepsy. My medication is being changed frequently but we are hopeful. I hope to one day return to nursing.
Having a seizure response dog would allow my family peace of mind. It would allow us carry on. No family is without struggles, but having a SRD would allow us to focus on the things we should be focused on instead of if I am going to seize at the grocery and hurt myself or while doing dishes. It would allow my husband to be able to be at work and stay focused on his mission at hand and his commitment to the Army and not on me. His mind could be focused on what it needs to be. By the end of her training we will be transferring closer to family and that is where we were selected to receive a dog from. Having a SRD would help me to sleep at night because it will help provide reassurance that someone can get help if I seize in my sleep.
People who have epilepsy are at risk for a condition known as SUDEP- Sudden Unexpected Death In Epilepsy Patients. I learned about this through the Chelsea Hutchinson Foundation. My doctor never told me about SUDEP. www.ChelseaHutchingsonFoundation.org
Seizure Response Dogs (SRD) are highly and specifically trained dogs. They can literally be a saving grace. A SRD could get help or help me. They are trained specifically to one person. They will remove hazards from aroung a person while they have a seizure. If the person is confused, the dog is trained to block that person from potential hazards like stairs or roads, etc. They can also retrieve phones to call for help. They can literally go get help or move the person to a safer place. They can retrieve medication. They can do many essential things that are very beneficial and necessary for a person with epilepsy. Please read more about SRD and Epilepsy on www.epilepsy.com
A SRD would be like family to us. We have spent some time in Hawaii with the Army. Family in Hawaiian is ohana. If you take care of your ohana they always take care of you.
The total cost for Charlie's training will be $20,000. I have been blessed to receive a grant for $2,500 from the Chelsea Hutchinson Foundation towards the cost of Charlie's training.
My GoFundMe Account has been linked directly with Kentucky Working K9 and the trainer Tammy Nugent. You can confirm this through GoFundMe directly or with the trainer herself via her website at www.kentuckyworkingk9.com Her contact info can be found there. They are a non-profit 501(3) organization. All funding raised goes directly to the organization. Thank you so much in advance!
Below is a picture of Charlie. She is a Chocolate Labrador Retriever I was selected for and who I am fundraising for. Her training is very extensive and will take approximately 18 months to complete. Service dogs, including SRD are covered under the ADA Act. So please... If you can find it in you heart, please Chip In For Charlie!
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