Q: How do you get first responders (or the public for that matter) to react positively and supportively when Robert has his seizures and you need assistance? How do you handle it when you are met with stand-offishness?
Robert: (Regarding first responders): “The ambulance people treat me nice. They’re very nice to me.” (Regarding people who are stand-offish): “People are nice to me.”
Trish: The upside of Robert having a memory problem is that he doesn’t recall the kids in school treating him differently or the time (several years ago) someone in a public restaurant witnessed him having a seizure and said, “He must be on drugs.” I have noticed when we are out and about that people will look at Robert because he uses a walker and he wears a helmet. I realize people are curious so this doesn’t bother me or Robert. For the most part, Robert and I have been treated with great kindness.
Q: Aside from Robert's epilepsy, how does he feel he's treated as a "disabled" person? Does he sense if others view him differently? If someone is cruel, does Robert meet that with humor, anger, confusion...?
Robert: “I do not get mad at them. I probably would tell them a joke or laugh or something.”
Trish: Upon further questioning, Robert says people don’t treat him differently. I asked how he was treated when he was in high school (trying to jog a few memories) and he said, “When I was in gym, I had to go to a different class. I taught the other students how to shoot pool. They liked that.”
Q: What, if anything, do people “not get”? What is the greatest misunderstanding people have about epilepsy that you have been exposed to?
Robert: “I’m not exactly sure. Some people are confused about what epilepsy is. Some people don’t know what epilepsy is.”
Trish: I would have to agree that it isn’t so much a misunderstanding about epilepsy but more of a lack of knowledge about it. For many, many years epilepsy was feared because those with epilepsy were thought to be “possessed” and there are many countries today that are still working to dispel these kinds of beliefs. There also continues to be many misconceptions about seizures. (For instance, it is a MYTH that a person can swallow their tongue during a seizure). Something else people may not know is that epilepsy is not a disease but is instead is a disorder or condition. There are many different causes of epilepsy.
Q: Do you know of people switching to a smaller vehicle so has not to cause others harm during an accident if they have a seizure while driving?
Trish: Rules for obtaining a driver’s license vary by state but, generally, each state requires people to be seizure free for a period of time before they are able to obtain a license. Other considerations such as the types of medication a person is on to control seizures are factored into the decision to grant a driver’s license. In California, there are two types of Medical Probation. One is for drivers who have 3 – 5 months of seizure control and the other is for those with 6 months or more seizure control. I think it would be difficult to be able to drive (legally) without seizure control. I haven’t heard of people with epilepsy switching to a smaller car to mitigate the damage of an accident.
Robert never had enough seizure control to allow him to get a driver’s license. For many years, he was a master at the bus system and could walk miles to go somewhere he wanted to go. Only within the last couple of years did Robert tell me a story of how our dad once let him drive on the freeway. I could only shake my head at the thought since this was not surprising behavior from my dad. On the plus side, Robert was able to experience driving which made both him and my dad happy but I cringe at the thought of what could have happened if he had experienced a seizure and, in my opinion, do not think it was a risk worth taking.
Q: In September the committee I serve on will be holding an Emergency Preparedness (EP) fair to coincide with National Preparedness Month. What should I have at the fair to address Epilepsy and how it relates to EP?
Trish: This is a great topic! Thank you for your work in this regard. Robert’s biggest challenges in an emergency situation would be:
