Presenter: Neal Howard
Guest: Don Miller
Guest Bio: Don Miller dispells common myths about the Epilepsy. He’s lived with it for the past
40 years and explains what epilepsy fitness is and how it can be applied to anyone. He shares his personal story that includes overcoming an alcohol addiction. He’s the author of “Epilepsy Memoir: My 40-Year Detour.
Don Miller discusses what Epilepsy is and how it has affected him. He talks about challenges and triumphs having lived with the disease for more than forty years.
HPR – Health Professional Radio
Neal: Hello, you’re listening to Health Professional Radio. I’m your host, Neal Howard. It’s my pleasure to be in studio today with Mr. Don Miller. Now, Don has more than forty years of experience living with epilepsy. He’s also a published author and his message is very simple: that people with epilepsy are normal. And you know, he doesn’t like that word “normal” anyway. He’s also here to talk with us about some of the triumphs and challenges that he’s gone through during his life. His book, “Epilepsy Memoir: My Forty Year Detour” has been published just in time for last month, which was Epilepsy Awareness Month. How are you doing today Don?
Don: I’m doing great.
N: Great. Now Epilepsy Awareness Month, you published your book, “Epilepsy Memoir: My Forty-Year Detour: just in time for Epilepsy Awareness Month. Now, many of our listeners our healthcare professionals and we don’t want to insult anyone’s knowledge or anything like that, but could you briefly explain to me exactly what is epilepsy? My experience is that it is just seizures, is it much more than simply seizures?
D: Okay, it’s a collection of symptoms that affect the brain. Seizures is a part of it. A seizure is excess static electricity in the brain.
D: And it falls under two categories based on where that electricity occurs. One’s “generalized,” which occurs through the entire brain.
D: The other is “partial” where it occurs on one lobe of the brain.
N: Okay, which type do you suffer from or have more experience with?
D: I have partial seizures.
N: Okay, okay. Now, I understand that you were just a normal kid until your first, what was termed at that time, a Grand Mal seizure. What was it that led to you finally being diagnosed with epilepsy?
D: Growing up, I was just a normal kid – running and playing. I played a little league ball, played football. I had the two Grand Mal seizures that were witnessed by my parents. And one seizure might occur due to Diabetes or for other reasons, but if it re-occurs, it’s repeated, then you’re diagnosed with epilepsy.
N: Okay, now these are seizures that occur without any other underlying symptoms, as you said Diabetes or some other type of abnormality, correct?
D: That’s correct.
N: Okay, now you’ve written the book “Epilepsy Memoir: My Forty-Year Detour”, it’s just been published in time for Epilepsy Awareness Month. What was it that led you to write a book, especially about epilepsy?
D: The brain is a scary thing. Even after years of study, medical people really don’t know much about it and I thought I’d like to relate the brain to something that people know so “the body is a chassis of a car and the brain is the engine,” The reason I chose that is because majority of people that have epilepsy do not have driver’s licenses.
N: Okay, now is that because they’re prone to a seizure at any time? Or is there some type of warning that a person has and maybe has some time to take a sit or pull over?
D: You can’t get a driver’s license unless you’re seizure-free for a certain period of time. For instance, in the state of Wisconsin, it’s three months.
D: And then you’re reviewed by the Neurological Board of Review and they decide whether you can have a driver’s license.
N: Now, are you aware whether or not it is the same in other states? Is that a federal standard, or is it a state to state thing or even by a department thing within states?
D: It varies state to state. Some states there is no set seizure-free period. Some states it’s three months. Some states it’s six months and some States it’s a year. For instance, California, I believe it’s a year.
N: Can your doctor, your healthcare provider, be involved in your acquisition of a driver’s license or in some capacity that way?
D: Yes. As matter of fact my neurologist, Patricia Penovich of Minnesota Epilepsy Group, is a member of the state board that decides on driver’s licenses for people in the State of Minnesota.
N: Okay. So your particular healthcare provider was instrumental in you getting a driver’s license and I’m assuming that you have a driver’s license, even though I have no idea.
D: Actually, I don’t have a driver’s license.
N: Okay, okay. So, did you opt not to get one for your own reasons or were you advised by the state and your physician not to get one?
D: Okay. Back in High School, I went through classroom training and my father was the Driver’s Ed teacher. So we went on a back-country road in one of those boxy cars that they had back in the 70’s and I went into a seizure and I drove it into the ditch, and that point I decided that it would be safer for the general population If I wasn’t in the road. I would not like to kill or harm anybody.
N: I understand. Now, when we’re talking about, you mentioned earlier in this segment, that there’s a great deal of research being done into epilepsy yet healthcare providers, researchers, don’t know a lot about the disease. What are some of the statistics concerning epilepsy? Does it affect males more than females, young more than old? Is it something that can be grown out of? What are some of the statistics concerning epilepsy?
D: Okay. One to three percent of the population would develop epilepsy by the age of seventy five.
D: To put that into numbers, for the three percent rate in the world, two hundred and sixty seven million people have epilepsy.
N: Two hundred and sixty seven million. So, is it more males than females?
D: Yes. The ratio male to female – males, it’s two times the amount of females. For instance, a hundred and thirty eight million males and sixty nine million females for the three percent rate. In the USA it comes about to nine million people, six million males and three million females.
N: Are any of these people suffering from epilepsy and not knowing? How many of these people are either undiagnosed or misdiagnosed?
D: The percentages are not precise because a lot of people are undiagnosed and a lot of people choose to keep their epilepsy a secret. Even after years of education, to be negative, it’s still thought by some that it’s a supernatural aberration. I have a story: there was a member of the epilepsy foundation and she was in a tent revival. And she had a Grand Mal or GTC “Generalized Tonic-Clonic seizure”, fell to the ground. She was convulsing and the enlightened preacher, this is in 2012 mind you, he said the she had a lunatic demon loose inside and that she had to pray and fast to cure her demonic ailment.
N: And this is just a few years ago, that a statement like that was made concerning this very real medical condition.
N: So there is a lot of mystery and, as you say, even supernatural aspects or rumors or beliefs concerning epilepsy, even now.
D: Yes. Misconceptions and news about epilepsy. It’s a physical ailment, plain and simple. It’s not a psychological ailment, it’s a physical ailment. It’s not a supernatural aberration.
N: Well I was going to say that as we wrap up this segment, what would you say to healthcare providers who maybe dealing with many of these people that have gone undiagnosed or misdiagnosed? What is something that the alert healthcare provider can look for early on in the road to diagnosis?
D: Okay, there are various symptoms.
N: I mean are their symptoms generalized similar to other abnormalities? Or are there certain things that say, “Hey this is epilepsy, no doubt.”
D: Well, the Grand Mal or Generalized Tonic-Conic Seizure is pretty recognizable. Before the seizure gets worse, our vocal cord near the diaphragm and the scream or a shriek is hear, it’s called the “epileptic cry” – the person falls to the ground and their muscles begin tightening and loosening. There’s loss of natural muscle tone and the cloning action or repetitive action as the body seizes.
N: Okay and I’m sure with all the muscle spasming – the lactic acid that must be released during that – it could sometimes be painful especially if the seizure involves the entire body.
D: Yes. If the seizure is generalized, the muscles and the entire body are affected.
N: Now where can people get a copy of “Epilepsy Memoir: My Forty-Year Detour”?
D: Okay, that would be amazon.com and it’s available in Kindle format and paperback.
N: Great, great. You’ve been you’ve been listening to Health Professional Radio. I’m your host Neal Howard. We’ve been in studio today talking with Mr. Don Miller. He’s got forty years, as matter of fact his entire life, dealing with epilepsy. We’ve been here talking about exactly what epilepsy is. Some of the ways that a person can be diagnosed, some of the symptoms of epilepsy and also the fact that there is very little known about this disease. Research is continuing and our guest in studio today Mr. Miller is helping to get the word out and foster some understanding with his book, “Epilepsy Memoir: My Forty- Year Detour.” It’s been great having you in studio today with us Mr. Miller.
D: Well thank you much.
N: Thank you. Audio of this program is available at healthprofessionalradio.com.au and also at hpr.fm.