Saturday, November 29, 2014

Epilepsy Awareness Month Day 29: Q & A with Robert and Trish (Part 1)

Robert and I are answering questions for the last two days of Epilepsy Awareness Month. I was worried before starting this project that Robert would tire of doing all these videos but he is enjoying every minute of it!  (I should have realized what a ham he is!)

We had great questions which Robert and I answer on the video.  Thank you for submitting the questions! The questions and a brief summary of our answers are below. 

Question from Elissa:  Has your recent stay in the nursing facility taught you new things about epilepsy? If so, what? PS: Thank You (and Trish!) for your outreach and education! It's awesome that you're both doing this.

Answer: Robert answered this question and talked about how the nursing facility helped him to walk better. So true! Robert’s mobility has significantly declined and the physical therapy given to him in the SNF was a huge help.

Question from Teresa: What has dealing with epilepsy taught you?

Answer: Robert gives a terrific answer to this question. (He usually surprises me with his answers and this was no different.)  Robert said he has learned to live day to day and to pray for no more seizures.

Question from G-J:  What information would you give a newly diagnosed young adult and their family?

Answer: I fielded this question and want to list the resources here that I discuss in the video. I also stress that it is important to learn as much as possible about the type of seizure a person has and the medications the person with epilepsy starts taking. I would refer someone newly diagnosed to several epilepsy organizations.

For education and resources:

For support:

Chelsea Hutchison Foundation. Provides help and support to families dealing with epilepsy. They are particularly focused on teens and young adults.

Danny Did Foundation. This organization works to raise awareness about SUDEP.

Especially for teens:

The Epilepsy Squad.  This group is near and dear to my heart.  They are a youth initiative working to decrease the stigma of epilepsy. You have never met more DETERMINED young adults.

Question from me:  Does it hurt when you have a seizure?

Answer: Robert answers that it does not hurt when he has a seizure. (Some people do experience pain during a seizure and some cry out during a seizure making it sound as if they are in pain. I am relieved to learn Robert does not experience pain – I wondered about that recently when he made noises as if he was in pain during a recent seizure.)

Question from me: Tell us about your helmet.

Answer: Robert demonstrates putting on his helmet and talks about why he uses it.

Question from Richard:  What do you do when someone has a seizure? 

Answer: I answered this question first, using the information from The Epilepsy Foundation as a guide. Safety is critical. Do NOT put anything in the mouth – ever! Robert added that he likes it when we tell him what happened during a seizure.  This was great information from Robert and something I hadn’t thought of before. Of course, I knew the neurologist needs to know what happens but it didn’t occur to me that Robert was curious about it.  (It seems obvious now that he says it, though.)

If anyone has more questions or a message for Robert, please leave them in the comment section.  Part 2 will run on the last day of Epilepsy Awareness Month! 

Thank you for your support in spreading epilepsy awareness and education!

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