Epilepsy Awareness Month Day 4: Just Two Guys Talking

Our trip to Anaheim for the 2^nd Annual Epilepsy Awareness Day in Disneyland is here! In fact, Richard, Robert and I are sitting in our hotel room right now and as soon as I finish this post and Richard has rested and Robert gets all of his jewelry back (I took some off to make it easier to get through security and he is anxious to have it back on), we’re venturing outside. 

Robert gets the window seat!

A few weeks ago I filmed Robert and Richard talking about how it is for Robert to live with us and how it is for Richard to have his brother-in-law living with us. 

This is not that video . . .

Instead I am posting the video I shot after that one.  Robert didn’t know I turned the camera back on so it was just him and Richard being their goofy selves. 

Completely appropriate now that we’re in the Happiest Place on Earth and will most likely run into Goofy!

So, I know you're dying to know: How is this related to the theme this month of The Impact of Epilepsy on Robert? 

I think it pretty much shows that epilepsy is always present and can always throw a wrench into the day (like on Sunday) but that most days we are just living our life and making the most of it! (An observation made by my dear friend Kathy who has lived her own caregiving life and continues to thrive post-caregiving.)

And - after our stressful Sunday, this laughter is just what we all need. 

Enjoy!

(More to follow in the next few days as we experience Epilepsy Awareness Day in Disneyland!)

Epilepsy Awareness Month Day 3: The Decision to Call 911

Robert’s seizures do not scare me.  He has had seizures for as long as I remember having my second little brother.  The only reason he needed to be taken to the hospital due to a seizure was because of what happened during the seizure: falls, concussions, broken jaw, a burned arm, near drowning.

Of course, Robert told everyone he was
"excellent."

I had to pick him up from school a few times when he had a seizure (resulting in a loss of bladder control) and mom was at work. I picked him up and drove him home.

Let me rephrase: Robert’s “normal” seizures do not scare me. 

It’s the out of the ordinary ones who give me a run for my money. 

The seizures that last three or four minutes – watching the clock in case he doesn’t come out of it at the five minute mark.

Those scare me.

A cluster of seizures with falls involved.  He had numerous seizures last February – complete with falls and his legs bent every which way. I thought for sure he was going to break something during that turbulent month.

That scared me.

A cluster of seizures that do not stop.  Robert typically has cluster seizures involving five or six seizures but I am able to give him 1 mg of Ativan between them and they stop. 

Sunday they did not stop.  Twelve seizures before I was even able to safely give him an Ativan. Then several more while I waited for it to do its work.  When the seizures didn’t slow, I gave him another Ativan.

That scared me too. 

Richard and I waited.  I called the on-call neurologist (because, of course, this couldn’t happen during office hours)!  He advised I take Robert to the emergency room. 

I didn’t want to.  I really don’t like taking Robert to the hospital because I know the decline that happens afterwards.  I know what a mess the ER is (great staff but it is a trauma hospital so it is very chaotic).

Here’s my confession of the day:

I really didn’t want to call the paramedics this time because we have a trip to Disneyland planned (for Epilepsy Awareness Day at Disneyland) and our flight leaves on Tuesday.

I am determined to take Robert to Disneyland, gosh darn it! I am willing the Universe to make this happen!  Robert is very excited about the trip (as are Richard and I) and I am not going to let anything stand in the way of going. 

That might sound irresponsible but I know how hospital visits go.  I did not want Robert admitted and didn’t want him to have any sort of decline/

By the time I called the paramedics, I had lost track of the number of seizures but estimated approximately 25 – 30 in a two hour span. 

That’s as many as he has in a month.

So, yes, I called the paramedics. 

BUT, UNIVERSE, WE ARE STILL GOING TO DISNEYLAND!!

Robert had another seizure while the paramedics were at our house and one at the hospital that I witnessed, once I was with him again.

That was at 1:00 p.m.  Robert finally saw a doctor and had blood drawn and a chest x-ray to check for an infection.  Nothing came back and I insisted it was okay to discharge us.  I promised to contact his neurologist the next day. 

Robert was discharged and I put him into the car around 8:00 p.m.

He proceeded to have three seizures on the way home and two once home.  I gave him another Ativan, got him ready for bed and watched him on the video monitor for quite a while. 

The neurologist’s office opens in a couple of hours and I will call them to see what they say about all of this. 

For today’s Epilepsy Awareness Month video, I am posting the video I took of Robert while he was having several of his seizures.  I actually was trying to capture one for the doctors but since he continued to have a cluster of them, there are several on the video.

I know on Day 1 I promised short videos.  This one is long and I haven’t had a chance to edit it.  Skip through anything that doesn’t interest you. 

(And, yes, I will post video of us in Disneyland – because WE ARE GOING!)

Epilepsy Awareness Month Day 2: Surgeries and Seizures

Robert has tried everything possible to control his seizures.  He is on a bucket full of medications (and tried just about all of them), he has been in studies for the Deep Brain Stimulator and Vagus Nerve Stimulator. 

He also had two brain surgeries in his twenties. 

In 1990, Robert had a “Left Parietal Lobe Heterotopia Removal” and in 1991 he had an “Inferior Parietal Lobectomy.”

I don’t know much about these surgeries and, frankly, wasn’t involved in Robert’s care during this time. Robert lived independently in the same town as our parents and I was an hour and a half away with a young child. I visited with Robert on the holidays and called to check in on occasion. 

I recall our dad being opposed to the surgeries and heard him say for years afterward that Robert shouldn’t have had them.  Dad thought they caused Robert to have cognitive decline but he also had a very illogical view of doctors in general.

In other words, Dad wasn’t the best person to give a review of the surgical outcomes.

Robert wanted the surgeries.  He wanted to stop his seizures.  As Robert describes in his video today, he was having Tonic Clonic seizures 30 – 36 times a month.  (Robert calls them Grand Mal in the video which is what this type used to be called.) Robert was frequently in the hospital due to falls and injuries from these seizures and, in my opinion, would not have survived as long as he has without the surgeries. 

Robert was an adult and it was his decision.  He went forward with both surgeries, in spite of not being supported by our dad.  It shows great courage to go forward with something as major as brain surgery (and not one, but two), without complete family support. 

Robert had the surgeries and his seizures actually did change.  He no longer has Tonic Clonic seizures but has Complex Partial seizures now.  The frequency varies but he still has a couple dozen or three (or four) a month.  His seizures over the past year or so have come in clusters so he might go three or four days without a seizure and then is besieged by an onslaught of six in a day. 

Even at age 49, Robert is still working with his epileptologist to find the magic combination of medications to stop his seizures.

It has taken me years to realize this but Robert is both courageous and full of hope.  In the video today, Robert talks about his seizures and the surgery he had in 1990.

Be sure to let us know if there are any questions you have about the information presented this month and if there is anything else you’d like to know about the impact epilepsy has had on Robert.  We will do a “question and answer” video later in the month and would love to include your questions! 

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.