Epilepsy Awareness Month Day 26: Epilepsy Rant

I am usually a positive person but today has been especially trying. I realize tomorrow is Thanksgiving and I should be espousing everything I am grateful for.  I will. 

Just not today. 

Today I am on a rant. 

Epilepsy sucks.  It is more insidious than people realize.  People who have seizures lose minutes, hours, and days of their life.

Epilepsy has no regard for schedule. Does it care tomorrow is Thanksgiving?  Absolutely not.

Epilepsy changes without warning.  I am used to Robert’s Complex Partial Seizures. He averages 20 – 25 seizures a month. This month, his seizures are out of control.  He has had not one but two days of non-stop cluster seizures (totaling at least two dozen each day).

When it happened earlier this month, we thought maybe he was super excited about our trip to Disneyland.  We (meaning me and his neurologist) couldn’t figure out any other reason for the unusual cluster. I chalked it up as anomaly.

Then it happened again – three weeks later. 

Are his seizures changing?  Are we moving from one or two every few days with an occasional cluster of 3 – 4 to a few dozen in a day? Will this become the norm? 

Who knows!  Because epilepsy is unpredictable and in a third of people with epilepsy it is never controlled.  Never.

Epilepsy kills. Yes, it kills.  Fifty thousand people die annually in the United States from epilepsy (prolonged seizures, SUDEP, and accidents caused from seizures).

50,000!

Epilepsy changes lives. A woman – a kind, wonderful woman – loses her daughter and mother to seizures. A mom takes a low-paying job because it allows the flexibility to support her son who has epilepsy follow his dreams. A mom advocates for the legal use of CBD after seeing her son’s epilepsy continue to be uncontrolled. A man and his wife care for their disabled son and have sat bedside with him numerous times when he was on the brink of death. A confident, empowered woman becomes self-conscience because the of damage epilepsy medications have done to her teeth.

Let's do more research to find a cure for epilepsy.  Let's do more advocacy.

Let's do more ranting. 

Kick Off to Epilepsy Awareness Month 2014!

As promised in October, Epilepsy Awareness Month is going to be full of education, awareness and ROBERT! 

Robert is getting pampered on the first day
of Epilepsy Awareness Month 2014

This has been a year in which I was pretty much hit over the head with the damage uncontrolled epilepsy can really do.  I knew about SUDEP and horrific epilepsy disorders that can cause infants to have hundreds of seizures a day but the damage to an adult with uncontrolled epilepsy? 

What happens to adults with uncontrolled epilepsy who do not succumb to SUDEP or fatal accidents?  What is the toll on these adults?  There is not a lot of information out there. 

For Robert (and I can only speak about Robert’s experience with uncontrolled seizures), this has meant a cognitive decline, a physical decline in mobility as well as generalized weakness and new diagnoses Cumulative Traumatic Encephameylopathy and Parkinsonism.

The revised mission of Robert’s Sister is to educate and advocate for those with uncontrolled epilepsy in order to generate solutions and resources for both the person with epilepsy and their caregiver, particularly the working caregiver.

The goal is to post a new video every day throughout November but as all caregivers know, sometimes caregiving gets in the way of the best of plans! (That’s my disclaimer if I miss a day or two).  J

To follow Robert’s Sister, please sign up to follow this space by email or follow us on Facebook, Twitter, Instagram, Pinterest or You Tube.   

This month, our theme is The Impact of Epilepsy on Robert. I recognize the value of your time (and truly appreciate you taking time to read this blog and view the videos) so am keeping these videos fairly short without compromising the message Robert would like to convey.

Oh, another disclaimer! I am not a professional videographer so please forgive the camera-person (me).

Let’s kick things off with Robert talking about his seizures. 

Sometimes Seizures Scare Me

I don’t like to admit seizures scare me but sometimes they do. 

You would think I would be used to Robert having seizures.  After all, he’s my youngest brother and he’s had them practically his entire life.

Robert's downstairs bathroom

Robert’s seizures have evolved over time from Absence Seizures when my parents first realized he had a problem to Tonic-Clonic Seizures through his middle and high school years.

After a couple of brain surgeries, he now has Complex Partial Seizures which last (for him) between 10 seconds and five minutes. 

Over time, I was able to get used to most of his seizures.  I knew what to expect. Since Robert moved in with us, my husband and I keep a log of his seizures. This log is probably why I was so detail-oriented with my Caregiving Day Log.  It’s amazing how much can happen in 10 seconds Ten seconds doesn’t seem like a long time but try writing down everything you do in 10 seconds. It’s probably a lot more than it seems.

A typical entry into Robert’s seizure log for a 10 second seizure: “While washing his face; rt hand slowly went down; head to rt.”

Typically, he has his seizure, I wait and watch to be sure it doesn’t go into a longer, more unusual seizure and then he finishes up whatever he was doing.  Robert doesn’t like to say he had a seizure and prefers to tell me he “fought it off.”  I used to correct him and tell him he did in fact have a seizure but soon realized how important it was to him to be able to believe he was fighting them off.  I no longer try to take that away from him.  I discreetly log the seizure and help him with what he was doing. 

Those seizures don’t scare me.  I am used to those and recognize they are just part of our day.  They are part of every single day.  My log for February shows Robert having more than 60 seizures – and those are just the ones Richard or I witnessed. 

This week, Robert had two seizures that were longer than usual, different in what happened during them and, frankly, scared the crap out of me. 

Both were during his morning bath.  Robert and I have developed an excellent system for his morning bath which was borne out of necessity since we don’t have a downstairs shower. Robert sits on top of the toilet and I hand him a wet washcloth. While he’s scrubbing his face, I wash his hair. I then give him a dry washcloth to dry his face and hair.  While he’s doing that I get another washcloth wet and soapy and give him that to wash the rest of himself.  Once he’s done, he stands up, holding on the grab bars, and I wash and dry his back.  He usually has a quick seizure at this point and I put a towel on his and hold him up if he starts to lean or fall backwards.

The seizure almost always lasts for 10 seconds and then he sniffs or giggles and I have him sit down to finish drying off. 

One of the scary things about seizures is they are unexpected.  I considered it a win that I could expect this seizure in the morning while washing his back.  I could prepare for it which is what we always want to do with seizures.

Wednesday was different.  Robert was standing; I was washing his back. He dropped his head like usual and I grabbed a towel and held it against him, expecting to wait 10 seconds.

Ten seconds passed and his head went further to the right and his legs gave out. As he was crumpling to the floor, I tried to hold him up to no avail. He’s 213 pounds and feels about double that when he’s dropping to the floor.  I am just not strong enough to hold him up.

I slowed his slump but couldn’t keep him up.  I called for Richard but by that time, Robert had turned his body so he was facing another wall and was already on his way down. I had him under his arms and I was doing my best to keep his back from hitting one wall and his head from hitting another wall (success with the back; not so much with the head). Richard and I  tried to move him so his back wasn’t leaning against the bookcase in the bathroom or didn’t hit his head again but his legs were jammed under him and against the toilet.  I put a towel between him and the bookcase and kept his head away from the wall.

With the three of us in this tiny bathroom and Robert’s limbs going in all directions, it looked like a Twister game gone wrong. 

My fear was he was going to break his leg.

Robert came out of his seizure after a couple of minutes but was very confused. Taz managed to squeeze into the bathroom and proceeded to lick Robert’s arm and ear. Robert was too confused to even manage to look annoyed.

It took quite a while for Richard and me to get him to move so he was in a more comfortable position. Once Robert was back seated on the toilet, I checked him for bumps and bruises and he only had a little scrape.  Thank goodness but it was extremely disconcerting and I was very upset thinking he had come close to breaking a bone. 

Thursday brought yet another different seizure. This time, I was more prepared.  Robert was having his usual seizure during his back washing and also saw his head move further to the right. I called for Richard to bring the walker, thinking I could lower him into the walker before he slumped to the floor. I kept Robert from twisting his body this time but he still slumped to the floor. This time he was on one knee, head against the wall and his other leg was scrunched under him and wedged against the wall.  This time, I feared he had broken his knee cap because his knee was extremely red. 

This seizure kept going.  Minutes ticked by and his breathing was labored, then he was moaning.  

Then, silence.

In that moment, I thought he stopped breathing and I thought of all the children and adults who have died of SUDEP.  I told Richard he stopped breathing and, because of Richard’s position, he could see Robert breathing and told me he was.

Now I could breathe again. 

Within seconds, Robert started pleading, in a soft, pained voice: “Help me. Help me. Help me.”

I could feel my heart shattering into a million pieces.

Is he hurting? Is this what is going on his head with each seizure?  How can I help him?

Richard and I were able to move him a bit and got him up on the toilet. He was extremely confused and groggy but out of the seizure long enough for me to give him an Ativan which is my go-to drug in case of the seizure clusters or a prolonged seizure. (I have Diazepam but it is administered rectally which is usually impossible.  We came close to using it this time since he had been in mid-bath but was able to take the oral medication instead.)

Robert was confused but was finally finished with his seizure. I checked him for any bruising or bumps, Taz got in a few licks and then I helped him dress, Richard prepared his breakfast.  I took him to a previously scheduled appointment with a podiatrist and then after dropping him off at Day Program, I went into work.

Richard was able to find a shower chair for us to use since a short, 10 second seizure while I am washing his back is no longer something I can prepare for. 

This morning we used the chair and it worked perfectly.  Robert didn’t have any seizures and he was able to get cleaned up easily.

The neurologist added a new medication to Robert’s regime.  If it works, we can eventually try reducing one of the other seizure medications. 

I don’t like changing his medications around but he is having way too many seizures.  We have to do something.  Robert started this medication yesterday so we will watch for any awful side-effects and hope for a reduction in his seizures.

Changing Robert’s medication scares me and these seizures scare me but I have to set aside those fears.

That is how I am going to help you, Robert.   

(Richard, my husband and co-caregiver, also wrote about this experience from his perspective which you can read on his website PickYourPain.org.)

What Epilepsy Means to Me: Gina Restivo, Author of Fly Danny, Fly

First off, let me just tell you that Gina is a DY-NA-MO! I asked if she was interested in being involved in these interviews and within about fifteen minutes, her interview was completed.  She has energy, drive, passion and takes action! 

She also makes a point which really hit home with me: in order to get more funding for epilepsy awareness, treatment and research, people who are not directly affected by epilepsy need to be involved.  They need to be a part of the equation. 

Right now, let me get out of the way and let Gina tell you more about her passion for epilepsy advocacy:

Robert’s Sister: Tell us how you are involved with epilepsy advocacy. 

Tom Stanton, Danny Did Foundation, Gina Restivo
(and her son Sam) Chip Gilbertson (co-author Fly Danny, Fly)
Laura Forney, Recording Artist, Troy Swanson, Gap Kids

I began supporting the Danny Did Foundation in 2010 on Facebook, and slowly through that affiliation learned more and more about Epilepsy.  The stories I read and the people I came to know inspired Chip Gilbertson and me to rework a manuscript we had written for a children’s book, and to publish Fly Danny, Fly, which is a children’s picture book. We have a dedication page in the book to Danny Stanton and The Danny Did Foundation. A portion of the proceeds also benefit the foundation. I have another book coming out in January that will include another dedication page to The Chelsea Hutchison Foundation and to Danny Did. These foundations continue to be a great source of inspiration for me for their accomplishments and for their heart.

Robert’s Sister:  How did you get involved in epilepsy advocacy?  Do you have epilepsy or know someone who has it? 

I do have a nephew who has Epilepsy, but have learned most of what I know through my Facebook connections and from people who have reached out to me through that avenue. Certainly Fly Danny, Fly also fueled my fire in that at book signings or events, I do a lot of talking about Epilepsy to people who are not familiar with it in many cases. So, I have tried to understand a bit about how it is to live with Epilepsy through the many I have come to know who struggle with it. Even though I am far from truly understanding it, I think I do well talking with others who don’t have Epilepsy in their lives and stressing the importance of funding and research.

Robert’s Sister:  What is your mission with regards to epilepsy? 

To get doctors to talk about SUDEP each time an Epilepsy diagnosis is made. To help The Danny Did Foundation and The Chelsea Hutchison Foundation through spreading their word. To most of all, bring the attention of the general public not suffering with Epilepsy to this devastating condition, and to hopefully help eliminate the stigma associated with seizures.

Robert’s Sister:  There are so many stories – many sad stories – about those with epilepsy.  How do you continue to be passionate about your cause in spite of these stories?

I am passionate because I have over 3,000 Facebook friends who all struggle with Epilepsy or have children or loved ones who do. Through FB, I know over 70 people who have lost loved ones to SUDEP.  For every sad story, there is so much courage and so much appreciation for the GOOD days in this group. I think that people who battle Epilepsy have learned how to live in the moment, and to be thankful for the seizure free ones.  Hard to NOT fight for this group. I’ve met so many inspiring people!

Robert’s Sister:   How has epilepsy affected your life?

Certainly hearing about Danny Stanton dying of SUDEP, something his parents were never told could happen, enraged me. But the way that Danny lived his moments is what started me on this journey to live my moments more fully. Danny Stanton inspires me every day. There are days where I have to stay away from my computer….days when it’s too hard to read. I don’t have Epilepsy and my children don’t either. Yet Epilepsy has affected the way I view my own life and the way I view my purpose. The people who struggle with Epilepsy and the foundations that support them have inspired me to spread the word. I find ways to do that.

Robert’s Sister:  What do you see as the greatest need for epilepsy awareness or research? 

Getting people who are not directly affected by it to understand the magnitude of this condition. I think that this is the most important group to reach out to for someone like me who isn’t directly dealing with it.  People have no idea how serious this really is.  The foundations like Danny Did and the Chelsea Hutchison Foundation are focused on getting information to people, subsidizing service dogs and seizure detection monitors, and keeping people alive and informed until a cure is found. But when it comes to actual funding for research, there needs to be a public outcry from more than those suffering with Epilepsy and the foundations supporting them. Cancer research is funded by millions of people who are not directly affected by Cancer. We need that here. We need public awareness. A good way to begin would be to teach kids in schools how to respond to a seizure.  Not just in some schools, but in ALL schools. That teaching would lead to questions about Epilepsy and an eventual answering of those questions either through a public campaign, or a group of kids who want to learn more. Something like that is so needed here, in my opinion.

Robert’s Sister:  What do you want people to know about epilepsy?

That it takes precious lives. That there are many different kinds. That 1 in 26 have it. That I could be diagnosed tomorrow and so could ANYONE. That it is random and merciless. That it needs our attention and our dollar.

Robert’s Sister:  Is there anything else you want to say?

Just that I hope the Epilepsy organizations are able to join forces a bit more than they have.  One voice powered by millions is louder than the scattered voices of that same group.

Robert’s Sister:  Please tell us a bit more about you or your organization and how we can contact and support you.  

If you’d like to purchase Fly Danny, Fly, it is available at www.pigupstation.com.  Speedy Shines will be available in January on www.Amazon.com.

Robert’s Sister:  Thank you, Gina, for your continued work toward epilepsy awareness and funding!  Your support and drive is much appreciated.

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.