Tuesday, March 6, 2012

Epilepsy Questions Answered (Part Two)

Robert enjoyed being interviewed this past weekend.  He answered my questions while snacking on a few cookies and was happy people wanted to learn about his seizures and epilepsy.  He was even happier when I let him have extra cookies since we had a lot of questions to answer!  Because there were so many great questions, we covered the seizure related questions in Part One and are covering the other questions here.

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:

1)     Mobility (he is very slow and needs either a walker or wheelchair to get around).  This is not universal to everyone who has epilepsy, however, but is something that needs to be considered during an emergency for the many people with mobility issues;

2)     Having access to medications is critical. Without medications, Robert’s seizures would be life-threatening.  People living with epilepsy who rely on medication for seizure control would experience devastating effects if they do not have access to their medications during an emergency. 

3)     Communication.  Robert can understand basic information and can carry on conversations but his brain processes things slowly.  Complicated instructions would be lost on Robert.  Rushing him for an answer in an emergency would be futile.  Again, this doesn’t apply to everyone with epilepsy but is a major concern for those with intellectual disabilities since communication is critical during an emergency. 

The last question I asked Robert was from me and his answer tells me that the need to help and to connect with others is strong in everyone. 

Q:  What do you want people to know about epilepsy?

Robert:  “I like telling people I have epilepsy.  I like telling people what to do when I have a seizure.  I tell them to make sure the person is laying on their right side if they’re having convulsions.  And time how long the seizure is.  And how long they’re spacey after the seizure also.  I ask if they have epilepsy too.” (Note from Trish:  It is important to lay a person on their side if they are having a seizure but it does not matter which side. I think it helps Robert remember what to do if he is very specific about the instructions).

Robert and I appreciate all of your questions.  A few follow-up questions have come in which I will address in a future post.  

In the meantime, if there’s anything else you’d like to know, please leave a comment.  I have a feeling Robert won’t mind another interview as long as there are cookies involved!


Heidi Alberti & Atticus Uncensored said...

These posts are fascinating Trish! Thank you for giving us a "behind the scenes" look at epilepsy. I'm going to share this post as well.

Judy, The Reflective Writer said...

What a great set of questions and answers--from both of you. I think epilepsy is probably one of those diseases that carries the weight of many superstitions and fears. Even with modern knowledge, it's hard to wipe away the impressions and beliefs that have woven their way into human consciousness over the eras. You and Robert are doing a service to humanity! I'm sure there are frustrating moments, but Robert seems to have the perfect attitude of acceptance and faith that people mean well enough.

Judy Stone-Goldman
The Reflective Writer
Personal-Professional Balance Through Writing

Trish Hughes Kreis said...

Thanks, Judy. It was fun doing the interview with Robert and I appreciated the questions from people. Awareness is so important - eventually, I'm hoping it leads to more research!

Trish Hughes Kreis said...

Heidi, Thanks so much for tweeting the interview posts. The more people know about epilepsy they more they'll talk about it and the less they will fear it. I appreciate you helping to spread the word.