Epilepsy Awareness Month Day 30: Q & A with Robert and Trish (Part 2)

It is the last day of Epilepsy Awareness Month!  I have learned so much from Robert this month and hope we helped others learn about epilepsy and about Robert. 

I am very grateful to everyone for watching the videos, reading the posts and supporting all of us in our mission to raise awareness not just about epilepsy but about the long-term effects of uncontrolled seizures. Robert, Richard and I greatly appreciate your support.

The last few questions were all for Robert and he took his job of answering them very seriously. (Of course, there were laughs and dogs thrown in as well.)

Question from Rachel: If you didn’t have epilepsy, what job would you want to have?

Robert thought about this and decided he wanted to work in an office but not in insurance sales (sorry, Dad).  Robert thinks he would have worked with numbers, like Other Brother.

Question from Rich:  What does it feel like to have a seizure? 

Robert talked more about the aura he feels before a seizure and how he is sometimes able to “fight them off.”  I have no doubt Robert has the strength to do this!

Question from Rich: What would you have done with your life if you didn’t have epilepsy?

Robert thinks he would like to read the bible more. He also mentioned wanting a book from Dr. Charles Stanley (a church program he watches every Sunday).  I guess I know what someone is getting for Christmas!

Question from Pegi:  How do you manage to stay excellent most of the time with all of your challenges? What advice would you give to other chronically ill people on how to maintain such a positive attitude?

Robert’s answers to both of these questions should surprise absolutely no one.  Prayer is what helps Robert and is what he recommends others do as well.  (Robert probably should have been a pastor!)

Question from Richard: How do you do fight off a seizure? 

Robert’s answer – he uses his strength and prays. 

Yep, Pastor Robert has a very good ring to it. 

Thank you again for watching, reading and supporting us this month. I hope we accomplished the goal of explaining the impact epilepsy has had on Robert.  It has been significant but it definitely has not been all bad as one might have expected. 

Special thanks to Robert for sharing his life with us.

Epilepsy Awareness Month may end today but our mission continues.  Please help us spread epilepsy awareness and education by sharing these videos and talking about epilepsy.

Thank you!   

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:

The Epilepsy Foundation

CURE Epilepsy

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!

Epilepsy Awareness Month Day 28: Brotherly Love

My first memory, as impossible as it seems, is of my brand new baby brother being carried through the back door of our two-bedroom, white house in Omaha.  We moved out of that house when I was entering the first grade and we forever after referred to that house as “the White House.”

I could not believe my parents were bringing me – at two years old – a real, live doll of my own to play with and care for and love.  Mom later told me she would wake up in the morning to find me in the new baby’s crib playing “mom.”  I fed him, held him and played with him for hours on end.

This was Other Brother’s arrival into the world, not Robert’s.

Robert arrived a few years later and even though I was five years old at the time and probably should remember another new bundle of joy being brought into the house, I have no recollection of it in the least.  Robert’s entrance into the world was memorable for Mom, however – he broke her tailbone.  The doctor also actually used forceps to help deliver Robert (yeah, I can’t believe that is an actual tool sometimes used during childbirth).

Robert literally came into the world kicking and screaming. (I’m pretty sure Mom was too).

Ever since finding out how traumatic Robert’s birth must have been, I wondered if that somehow contributed (or caused) his epilepsy.

Despite this rocky start and subsequent years of our young parents doing their best even while they battled depression, Bipolar disorder, substance abuse and Robert’s epilepsy, I remember a happy childhood.

Much of that was because of these two guys.

A goofy moment between brothers

Maybe it was because of everything happening in our household that Other Brother and I forged a strong bond that remains to this day. I wasn’t always close to Robert but that changed once I took over his care. 

I know that Other Brother is someone I can count on for support not only for me but also for Robert.  I know that when the three of us are together there is laughter and love and an appreciation of our time together.  We don’t really know what the future holds for Robert, particularly with his decline and increased seizures, but we don’t dwell on that when we’re together.  (We might joke about it with each other in a sick, morbid humor kind of way but definitely don’t dwell on it.)

We have never really known what the future held for Robert but this uncertainty (and the chaos of a crazy family) taught us to enjoy what we have right now and not to take ourselves too very seriously. 

I cherish the laughter and joking and love when the three of us are together and know that this strong bond was borne out of adversity (including epilepsy). I also know that it remains even when we are not in the same room together.  

My wish for everyone with epilepsy is that they have family or friends that are just as supportive and who will always be there for them.  Adversity is best traveled together and I am fortunate to have my two brothers always by my side.

Other Brother and Robert aren’t known for their sap and mushy ways (they leave that to me, obviously) but I think I detected a “moment” between them during the interview.

Maybe my sappy ways are rubbing off on them!

Epilepsy Awareness Month Day 27: Gratitude

Today is a day for gratitude! Richard, Robert and I share what we are grateful for and wish everyone a very Happy Thanksgiving!

One impact epilepsy has had on Robert is that it has made our family that much closer.  For that, we are all grateful.

We have much to be grateful for! 

Wishing everyone a wonderful day and a year full of blessings.

Happy Thanksgiving!