Arthritis, Alzheimer’s…Epilepsy?

By on December 1, 2014
Pamela Wilkes horseback riding

By Pamela Wilkes−

What I’ve learned about aging, life with seizures, and giving back

When I turned 50, I knew it was time to start thinking proactively about my health. Like many people who make it over “the hill,” as I joked, I knew I needed to schedule my colonoscopy, start taking supplements for bone health and generally take care of myself in order to maintain the active lifestyle I’ve always lived. But while I looked out for preventing arthritis or other conditions like Alzheimer’s, my greatest health challenge would be something I never saw coming: epilepsy.

Despite epilepsy being one of the most prevalent neurological conditions, estimated to impact 1 in 26 Americans in their lifetime according to the Epilepsy Foundation of America, it wasn’t something I ever imagined could affect me—and certainly not later in life. But the fact is, older adults are the fastest growing population group with epilepsy.[1] At 62 years old, I am one of 300,000 seniors affected by the condition. With epilepsy awareness month in November, it’s an important time to raise awareness and understanding of epilepsy for people of all walks of life. Epilepsy doesn’t discriminate against race, gender or age.

Like many people over the age of fifty, I found it easy to dismiss medical symptoms—including those of epilepsy—as “just part of getting old.” For years I suffered from severe headaches, loss of awareness and a tingling sensation in my arms and legs that I assumed was part of the aging process. But finally, at the urging of family, I began consulting a number of doctors and looking for answers. Unfortunately, none were able to correctly diagnose my medical mystery.

Then one day a few years later, a friend who had a brother with epilepsy questioned if I might be experiencing the same thing. The thought had never entered my mind—wouldn’t people who experienced violent seizures be unable to safely go about their daily lives? Wasn’t this a condition one would normally be diagnosed with as a child? I was someone who had always been able to work, volunteer, exercise, and have a very active social life. And I certainly hadn’t ever experienced an episode of falling and shaking– my only impression of a seizure was at the time.

These perceptions were just some of the many things I thought I knew about epilepsy. I had no idea how much I was about to learn.

With no end or answer to my symptoms, I consulted a neurologist in 2005 and underwent a sleep electroencephalogram (EEG) to measure brain activity. It was that year, at age 53, I was officially diagnosed with epilepsy. I was relieved to have a name for what I was experiencing, but was shocked by the diagnosis. Not only did I have epilepsy, but further testing revealed that, at times, I was experiencing up to 80 seizures in a two hour timeframe. I learned that seizures could start later in life, and that they may look different than what we see in the movies. While some people experience seizures that involve falling or convulsing, a seizure may also look like a loss of awareness, a tingling sensation, even a severe headache, like mine did.

My neurologist prescribed a variety of medications—at one time I was taking as many as six different pills each day—but the seizures continued. Meanwhile, the effects of epilepsy on my day to day life were becoming more apparent. I had difficulty concentrating at my job with the Georgia Medicaid Department, often forgetting where I was or what I was doing. Frustrated with these new challenges, I started to become irritable and depressed, and ultimately withdrawn. This wasn’t the person I had always been in my life and seeing the people I loved worry about my health only made me feel less like myself.

Then, several months after my initial diagnosis, I learned about another option for treating my seizures: Vagus Nerve Stimulation (VNS) Therapy. A non-drug, implantable medical device for the treatment of epilepsy, VNS Therapy provides mild pulses of stimulation to the vagus nerve in the neck, and then indirectly to the brain, to stop or lessen seizures. Wanting to consider all of my options, I also received a second opinion from another neurologist who recommended surgery to remove part of my brain to stop the seizures. I decided that brain surgery was a much more invasive procedure than I wanted to pursue. I moved forward with VNS Therapy and underwent the outpatient implant procedure a week later.

After being implanted with VNS Therapy, my life changed for the better and I was able to get back to the person I really am. Today, I only experience infrequent seizures that are easy for me to control with the VNS Therapy magnet, a handheld magnet that I can swipe over the implant site in my chest to receive an extra dose of stimulation if I feel a seizure beginning.

Even though I’m in my sixties now and retired, I’m busier than ever. I work at a retail store part time, in addition to my true passion, giving back to my community in Atlanta, Georgia. I spend time working with a support group for the victims of domestic violence and am planning a 1k and a 5k with the women in our group. I also teach young adults studying for the General Educational Development (GED) test. Some of the most meaningful work I do is with the Epilepsy Foundation of Georgia. My volunteering for the Foundation leads me into local residential facilities for seniors where I meet others affected by this disorder.

Volunteering is something I’ve always made a part of my life, but as I’ve experienced health struggles of my own, finding more meaning and giving back has taken center stage. During National Epilepsy Awareness Month in November each year, I take time to feel gratitude for the full and active life I am able to lead today and hope that sharing my story to help others learn about this condition which impacts so many but is often still misunderstood.

[1] Epilepsy Foundation of Arizona. Seniors. Accessed on October 8, 2014 from http://epilepsyaz.org/seniors/.

 

pamela wilkesPamela Wilkes lives in the Atlanta suburbs. She enjoys spending time with her family including her grown son, working in retail part-time, horseback riding and volunteering, especially in the epilepsy community.

To find out more about the non-drug treatment option that has helped Pamela control her epilepsy, please visit http://us.cyberonics.com/vns-therapy.

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Arthritis, Alzheimer’s…Epilepsy?