The Story of Robert

It occurred to me after telling the story of Linda and her son, Jason,  and of Cindy and her son Robert and their assistance dog, Boomer, I could tell more of the story of my own Robert. 

Most readers know Robert is my little brother who, at 46 years old, has lived with uncontrolled seizures his entire life.  He is physically and cognitively disabled and seems to lose a little bit more of something all the time. 

Everyone also knows he’s a card shark and delights in beating me at his favorite card game, Kings Corners.  If that ever changes, I know we’ve got serious problems.

It’s been extremely difficult for me to reconcile the Robert that I know now with the Robert I remember as a child.

Robert started having seizures when he was five or six.  He recalls the experience as either being able to watch cartoons in his head or seeing the colors “red, blue and green.”  Either I have a terrible memory or I’m an inattentive big sister but what is so remarkable about Robert’s childhood is that he was so normal.  Sure, he struggled in school.  He was even held back in either 4^th or 5^th grade because of absences.  He had seizures but he ran around like any other young boy.  He got into mischief and was “a handful” as we parents like to say about high energy kids.   Robert was diagnosed as hyperactive and was put on Ritalin for a while.  I don’t really remember that helping.  Having a brother with epilepsy didn’t seem all that unusual to me. 

He was kind of a pest but isn’t that the job of the little brother?

Robert tried a variety of anti-seizure medications.  Tegretol, Phenobarbitol, Dilantin – loads more.  The side effects were brutal when he was a teenager.  Rob would spend hours in the darkened closet of his room, refusing to come out.  Mom had a tough time handling him and he lived with our dad for a while once our parents divorced.  Rob was aggressive and surly and depressed.  He threw a punch at our mother at one point and was aggressive toward me as well.   I thought I knew everything about this period until we were at his recent neuropsychology appointment.

Rob told the doctor he tried to kill himself when he was ten years old.

A Caregiving Holiday Blog Party!

For whatever reason this year, many of our Christmas decorations decided this was the year to stop working.  Several strands of lights went through the “testing” phase of putting up decorations, only to stay dark (and, yes, we checked them on a different outlet in case our outlet was the problem).  Our lighted candy canes that usually brightly line our walkway still line the walkway but you’ll need to use the light from the lights in the nearby tree and the snowflakes hanging from the gutters to illuminate your way to our door.  We also had to say goodbye to the usual lighted holly we hang above our garage. 

Goodness, it was as if they all looked at each other and said, “We’ve worked long enough.  Let the elves make a few more candy canes and string lights and holly, we’ve paid our dues.”

So, off they went to Occupy the Garbage Bin.  

Inside, the situation was similar.  Lights didn’t work and a couple of ornaments broke (both of them Nebraska Cornhusker ornaments, no doubt shattering themselves to oblivion due to a disappointing football season).  At least we had about a thousand other ornaments and a beautiful, albeit, slightly banged up tree.

Looking good after a rocky start!

We don’t usually intentionally get a banged up tree but this year was special.  This was the first year our tree flew off the roof of our car during the trip home.

Yep.  A 10’ foot tree, freshly cut from a nearby Christmas Tree Farm flew off of our SUV on a two lane road and landed in the next lane over but miraculously avoided hitting any other cars.    

Bonus: it didn’t even get run over.

My husband would have loved to keep that part of our Christmas tree experience just between us and our son who was riding in the backseat (and who looked about as shocked as an 18 year old boy trying to maintain some semblance of “cool” can look), but with technology today, I had already texted our daughters and was in the middle of posting the event on Facebook when his request for privacy came through. 

Gotta make that request that a little quicker, honey.  My typing fingers are pretty darn speedy.  (Plus, who really could keep that experience to themselves?)

Now that the decorations are finished and the tree is in our home instead of the highway, it’s party time.  Since this is a blog, this is a blog party. 

This week, I’m participating in the Caregiving.com HolidayProgressive Blog Party!   It’s a great opportunity to read the blogs of other caregivers as well as those blogs of a few people running businesses which are designed to help caregivers. 

I never tire of mentioning what a fantastic resource Caregiving.com is for caregivers.  It offers a community – no, a family – of support, resources, inspiration and caregiving tips.  If you are a caregiver with a blog or have a business geared toward caregiving, you can join the party too!  Visit caregiving.com for the details to join and how to win great prizes.

Speaking of prizes, at the end of this week I will give away one autographed copy of my book, Forever a Caregiver, to a random visitor/commenter.  This book is for anyone who is a caregiver or who has a family.  J

Now, imagine sitting around our tree (which doesn’t look too bad after having spent some time on the highway), grab some hot chocolate (with a candy cane in it, of course), a couple of cookies and enjoy the party. 

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. 

Meet the Faces of Epilepsy

When I was growing up, I knew one person with epilepsy: Robert.  My knowledge of epilepsy was limited.  I knew he had seizures, I knew not to panic when they happened (early training for my overall “let’s not panic” motto) and our parents took him to a lot of doctor appointments.  They were on such a quest for a cure they once even took him to see a neurologist in Switzerland (from our home in Nebraska).  They wanted the best neurologist in the world to see him and made it happen.  Unfortunately, they returned defeated since the neurologist didn’t recommend surgery (or any other options) at that time.

Robert was different because he had seizures but he had friends. Not all the kids were very understanding but he did his best to educate them even then.   By the time high school came for him, he had friends but many people shied away from him too (having tonic clonic seizures with a loss of urinary control doesn’t do much to put you on the popular track in school).  Robert once told me that he realized people were saying mean and incorrect things about him after one of these seizures so he asked his teacher to let him give a talk to the other students to educate them about the disorder.  The teacher allowed him to talk to the class and Robert spread epilepsy awareness in his own way.  I am grateful to that teacher because, even years later when telling me the story, Robert feels great pride that he was able to educate the other kids about epilepsy.  

During Epilepsy Awareness Month in November, I was fortunate to meet many other extraordinary people either with epilepsy or caring for someone with epilepsy.  Over the next few days, I want you to meet them too.  

One of the first people I met when I started the month of epilepsy awareness was Linda.  Linda is a mom, grandmother and wife living in North Dakota.  She’s probably living with a bit of snow right now!  She’s also a caregiver to her son, Jason, who (if I didn’t know better) would think was Robert’s twin.  Their stories are very similar. Linda shares their story:

“Jason had his first seizure in 1971. Up until then he was a normal, happy, healthy 2 ½ year old. From that day forward our whole world turned upside down for him and our family. Epilepsy not only impacts the person who has it, but the whole family unit has issues in many different areas of their lives as well. We live in a small rural community in SW corner of North Dakota, so, we had to travel many miles to find the medical help we needed for Jason. There was no Internet or great support systems back then. We made numerous trips to Mayo Clinic, U of MN, and other clinics in ND and SD. We tried the Kerogenic Diet, surgery in 1983, VNS implant in 1990 and of course every med and combo of meds on the list. Jason just seemed resistant to all meds. Usual side effect was horrible behavior and since he lived at home, that was just not acceptable. At present he is on Carbatrol and Zonisimide, which seem to be working well together for behavior.

“After 40 years, he still averages about 30 seizures a month. Every year he goes downhill physically and mentally. Jason lives at home with me and his Dad.  I have always been a stay at home Mom. We are basically his shadows. He attends a sheltered workshop 5 days a week.  Jason has two younger brothers, who he calls his "big brothers," and he is an Uncle to 5 kids. He loves home, puzzles, books, movies, especially the Star War Movies and playing board games. He always tells people "you can choose to be happy or sad. I choose happy.

“My husband, Gary, retired early to help care for Jason and we basically just live a simple quiet life and enjoy home and family. We were told in June, by the doctors at Epilepsy Group in St. Paul, MN, that we were pretty much out of options.  Unless research can find some miracle, I doubt Jason will ever be seizure free. Sadly, I've resigned myself that this is probably the best it will be for Jason for now. After 40 years, one just gets worn down mentally, physically and financially.”

Even with these frustrations, they "choose happy."

I am grateful to have connected with Linda and look forward to sharing with her any new information about Robert and learning more about Jason.  You can read more about Jason’s story at Crowdrise which is a fundraising site.  Linda has stepped out of her comfort zone to raise money for CURE to help, as she says, “keep the lights in an epilepsy research lab for a day or two.” 

Tomorrow, I will introduce you to another Robert and his assistance dog Boomer!