Introducing Another Robert

For my final blog about Epilepsy Awareness Month last week I was going to list the last few facts and briefly talk about the people I met who either care for someone with epilepsy or who have epilepsy themselves.

What I realized is the stories of the people I met cannot be summed up in one or two sentences.  These are people who, like Robert, have lived with epilepsy or cared for someone with epilepsy a good part of their lives.

So my final blog has turned into a never ending "final" blog consisting of several posts.  I posted the final few facts and I introduced Linda who cares for her son who has lived with epilepsy most of his 40 years.  Both Jason and Linda “choose happy” in order to manage their situation. 

On Day 18 of Epilepsy Awareness Month I presented the fact about Seizure Response Dogs and learned of another Robert with epilepsy that day! 

Cindy cares for her son, Robert, who was paired with a Seizure Response Dog (Boomer) from Paws with A Cause in 2009.  

Cindy’s story touches on one of the astounding aspects of epilepsy which, according to the CDC, is that “epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.”   

If there was one drum I continuously beat during the month of November it was that more funding is needed for epilepsy research.  Now I’m no math wiz (as many of you know) but it seems to be a very simple formula.  Increased funding for research = better seizure control or (gasp!) a cure = less medical costs & fewer lost earnings. 

In Cindy’s case, not only is her son not able to work but Cindy left her career seven years ago to help care for Robert.  Cindy shares her story:

“My son Robert is 24 years old.  Robert's first known seizure occurred when he was 2 ½ years old.  The doctors told us it was a febrile seizure since he had a sudden spike in body temperature at the onset of the seizure.  They assured us we didn't need to worry, that it wouldn't happen again.  It did.  We were reassured once again, and then he had another.   After the third seizure we were reassured that he would grow out of this common childhood condition and wouldn't develop epilepsy.  Soon after, he had his first non-febrile seizure and then another.  He was then diagnosed with epilepsy – all before his fourth birthday. 

“In middle to late childhood, Robert’s seizures had been fairly well controlled with medication and had minimal impact on his overall quality of life.  We were told by two doctors that Robert could possibly ‘outgrow’ his seizures/epilepsy.  We hoped that with the arrival of puberty his seizures would end.  Some people with idiopathic childhood epilepsy do outgrow the seizures.  Robert didn’t.  We found ourselves on a completely different path than expected – with more frequent seizures, additional types of seizures, and a lot of side effects from seizures and the drugs used to treat them.  He was exhausted. Robert went from being on the varsity soccer team his freshman year of high school and taking advanced placement classes to not even being able to make it on campus by the end of his sophomore year.  He completed most of his remaining high school coursework with a home study teacher.

“In April 2006, Robert started experiencing multiple tonic clonic seizures without returning to baseline in between — this is when his epilepsy started to affect his quality of life in a major way.  Robert did graduate with his high school class in June 2006, but when all his friends went off to different college campuses and/or to find jobs — we were still doing everything we could to try to get seizures under control and find a medication that would help without intolerable side effects.  He is fatigued physically and mentally after seizures and his frequency of seizures does affect his cognitive functioning.  He has never had a driver’s license, never had a job, and he needed to stop attending his community college classes because once the repetitive tonic clonic seizures started happening on a more frequent basis, he couldn’t keep up — even with accommodations.  He does a lot with family (immediate and extended), is friends with all our neighbors on the cul-de-sac where we live, and still maintains contact with his best friend, Ben. But, living with frequent seizures, inherently leads to some level of isolation.

“Robert doesn't let all this stop him — though there are times and days it certainly does temporarily. He is in the high risk group for SUDEP.  While acknowledging this and taking preventative measures to manage risks — we hope that it doesn't ever claim his life permanently.  We attempt to live life, rather than live in a state of fear.  Robert has a great sense of humor and a huge heart!  Robert loves playing (& winning!) games.  As a family, we volunteer to raise awareness and funds for the Epilepsy Foundation of Greater Los Angeles, The Danny Did Foundation, and Paws With A Cause. The Chelsea Hutchison Foundation is near and dear to our hearts too.

“In May 2009, Robert was partnered with Boomer – a Seizure Response Dog from Paws With A Cause.  They are a fantastic working team!  Boomer is a character, does incredible task work, and is the most lovable dog I've ever met.

“What would Robert like people to know about Epilepsy?

“Epilepsy is underfunded and most people don’t know how to recognize and respond to seizures.  I would like it if there was more funding for research and education about epilepsy.  I don’t think people understand how hard it is to live with epilepsy . . . or even what it is.”

Cindy and Robert’s story reminds me a lot of my own Robert’s story.  The difficulty in completing high school and then taking community college courses but ultimately having to stop. The desire to educate others about epilepsy (not to mention the love of winning at games)!
Cindy’s story really tells how epilepsy profoundly affects not only the person with epilepsy but the family as well.  There are many more stories just like this one.  Please help spread the word about epilepsy and let’s find a cure for this thing!