I do not know how or whom to ask about advocating unless asking a
hospital that has an epilepsy ward ? I would suggest asking your
hospital that has
one of these floors were you could speak to the patients .

Jana Arrington

When my seizure level increased to 4-5 seizures a day my neurosurgeon and I began working more toward making the Deep Brain Stimulator device surgery happen. My focus at that time was to learn everything possible about the stimulator itself, this was in 2010 we began discussing the surgery option. With that being said, I began taking on the role of becoming my own advocate.
How I did it was quite easily. I made a folder on my laptop then began to make directories within that folder of things such as Contacts, Surgery Option, etc.
In the directory itself I would create text or MS Word Documents then placing research in those documents.
A good example I can provide is I joined a DBS (Deep Brain Stimulator) group that discusses the stimulator surgery where I began asking questions to everyone about the surgery itself; I had these questions written down ahead of time but as the answers were achieved I would then place them into the document for safe keeping.
I also would ask questions on issues of testing that took place before the surgery and other specifics. I was very thorough with my questioning but the DBS group I joined was quite beneficial to my needs in providing the documentation needed so I could learn about the DBS device itself. I also did research using Google studying the information given from the conversations had with my neurosurgeon which was of assistance. I was able to obtain medical abstracts including some readings that discussed DBS surgery done overseas.
In the end, it was a matter of my taking the steps of information I wanted to locate then starting to research it. By the way, I found the medical group by doing a search for them on Google; they were originally on Yahoo at the time but now on Facebook.
Being your own advocate is well worth doing as you are looking out for you.
If there's anything I can assist with let me know.

I work with the Epilepsy Foundation and am on their Alert List. If the Government wants to cut funding for research, trdatment, raising the cost of medications I am told. Then I would contact the Department of Human Services (unfortunately Kennedy is in that position) Members of Congress, and people who have to do with Medicare and Finances.

Seeing the changes in your memory at such a young age must have been frightening for you and for your family. You are lucky your mom was willing to help you with your reading. I had to read for my son, but he had ADHD, and there was no way he could sit still long enough to read much more than a page. Once he heard the book, he had it locked into his head. I have heard that some types of seizures can cause damage to the brain. I also read that frequency is a part of the memory loss. I know you have to think of your future, but I would try to live in the moment as much as you can.

@A MyEpilepsyTeam Member
Before I had epilepsy I could remember a lot and any time I read a story I could tell my mom everything about it. Right when I started having seizures, at age 10, I no longer could remember anything. My mom could tell the difference and she started helping me with my homework and read every book I read in school to help me. I’ve researched this and found how repetitive seizures can cause your brain to harden and shrink reducing your brain cells. I even have temporal lobe seizures. The temporal lobe is the part of the brain where the aorta is located. The aorta is the part of the brain the remember things. The dead brain cells in my temporal lobe affect my memory. My mom does every bit of my paperwork along with doctors appointments and so on. My parents have told me how I’ll be in assisted living some day.

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