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Beuna May Bugel: Misunderstanding of epilepsy

Hans was an engineer and inventor in his mid-60s. He proceeds to start blacking out without explanation. When Hans' family would observe him, he would start humming unresponsively to the world around him for minutes at a time. Hans' family grew concerned over what was happening. They assumed that he was suffering mini-strokes. He was confused at what exactly was happening to him.

Every incident would cause Hans' anxiety to rise seemingly leading to more blackouts. As soon as it was suggested to Hans that he had epilepsy, Hans was immediately resistant. Hans' symptoms did not seem to be consistent with what he knew about epilepsy; Hans never fell, nor did he lose consciousness, nor did he undergo convulsions. The key thing to know about epilepsy is that is often not what we think it to be.

Misunderstanding of epilepsy has historically skewed the outlook of those afflicted with it. For example within the last few generations when Hans was growing up, it was common for people with epilepsy to be institutionalized. People with epilepsy would often vanish from people's lives never to be seen again. Within communities of faith, people would accuse those with epilepsy of being "demon-possessed." When such mischaracterizations are out there, then it makes sense why Hans would be so unwilling to admit that he might have epilepsy.

An important thing to know about epilepsy is that people with epilepsy can thrive in all walks of life. Earlier this fall, Minnesota's most well-known individual with epilepsy, former Gopher football coach Jerry Kill was able to return to the sidelines as Rutgers University's offensive coordinator on account of a better self-care and medication regimen.

The outlook for seniors with epilepsy at first glance though doesn't appear always to be so positive. Epilepsy in many cases mimics Alzheimer's. For example, common symptoms in seniors with epilepsy include what are often dismissed as "senior moments" such as zoning out, memory lapses, and short-term confusion. These symptoms which many families determine to be Alzheimer's may be epilepsy. The reason for this misdiagnosis has to do with most senior seizures being partial rather than the more well-known generalized tonic seizures. In fact, according to the Epilepsy Foundation about 300,000 seniors are affected by epilepsy.

Judgments related to whether your loved one has epilepsy are best made by a neurologist. Epilepsy is a seizure disorder characterized by recurrent seizures. All seizures are not necessarily epilepsy such as in the cases of seizures brought on by strokes. While anything that injures the brain can cause epilepsy, it is marked by repeated instances of misfiring in the brain.

The good news about epilepsy in aging adults is that in most cases it is controllable through use of medication with additional treatment options potentially available.

What ended up happening to Hans? Hans has lived with epilepsy for about 20 years. Hans started taking his epilepsy medicine. Hans' condition began to stabilize. He was able to keep working as an engineer on a contract-basis. He was able to keep serving as a primary caretaker for his wife who had a stroke some years before. He was able to travel around the country downhill skiing until his knees began to give out in his mid-70s. Hans was able to keep cross-country skiing into his 80s and to travel to Switzerland earlier this year. Hans' story reminds us that epilepsy is not a diagnosis that prevents seniors from living a high quality of life into advancing age.

If you or your loved one have been diagnosed with epilepsy and are looking for support to keep thriving, please contact Lisa Peterson of the Epilepsy Foundation of Minnesota at (218) 624-1330 or via email at lpeterson@efmn.org. Special thanks to Lisa for collaborating on this article.

Pastor Stew Carlson is the grandson of Beuna May Carlson of Lindstrom, MN. He is also the Board Chair for North Shore Area Partners and Pastor of Sychar Lutheran Church in Silver Bay. He can be reached at sycharlutheranpastor@gmail.com.

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