It’s Epilepsy Awareness Month, so let’s continue with our series of blogs about our Epilepsy Community members’ experiences with this disease. Below is an interview with member “akamine2525.” Earlier this year, she gave the following interview in our monthly newsletter. Want to know what keeps akamine2525 motivated, who she admires and how epilepsy has affected her work life? Read and share on.
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(Amy) What keeps you motivated?
(akamine2525) Throughout the years I have been on many different medications for seizures. I’ve had pretty much all different type of seizures from grand mal to absence seizures. I have had psychogenic seizures due to previous abuse and bipolar disorder due to previous abuse. My doctors at Straub Hospital in Honolulu are the ones I trust the most with my recovery. My current physician, Dr. James Pearce, just recently started me on Keppra, which by far has helped me the most with all of my seizures and my bipolar disorder.
(Amy) Who do you admire and why?
(akamine2525)I admire all of the people who try to learn how to control their seizures with alternative ways such as diet, exercise, supplements, herbs, and religious activities if they are religious also helps a lot. It says a lot to me if a person tries to find control of their seizures because it says I really want to make life as easy as possible, not letting limitations get in my way.
(Amy) How has your condition affected your work life?
(akamine2525)For a while, seizures and bipolar disorder had a lot to do with work. Because my seizures were so out of control several years ago, it limited the amount that I worked, but when I was able to work, I did more than I could beyond my limits. Today, I don’t work, and I care for my dog, but if I had the opportunity to work again I would consider it.
(Amy) What’s your favorite part of PatientsLikeMe?
(akamine2525)My favorite part of PatientsLikeMe is I get to hear from other people who have the same conditions as me and also try to help them to get better with alternative ways besides prescription medication. My goal is to help others to limit their prescription medications if possible and to deal with seizures in other ways.
You can search for patients by more than 10 seizure types, such as simple partial, myoclonic, atonic, and tonic-clonic.
You can also search by 19 different epilepsy types, including temporal lobe, frontal lobe, occipital lobe, juvenile myoclonic, Lennox-Gastaut syndrome, and epilepsy with grand mal seizures on awakening.
Others in the community have indicated a causative comorbidity for their condition, such as:
Head injury (242 patients to date)
Brain tumor (70 patients to date)
Stroke (38 patients to date)
Encephalitis (34 patients to date)
543 patient members were diagnosed recently (5 years or less) and 823 were diagnosed 20+ years ago.
As part of this first survey, members told us the top issues most important to them – indicating the top three as overall quality of life, seizure worry (i.e., impact of seizures) and mental activity (i.e., thinking, concentrating, memory).
How are our members treating their condition?
Patients are using thousands of treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, procedures, and more.