Saturday, December 3, 2011

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! 

16 comments:

Denise said...

Hi Trish--Happy Blog Party! Thanks so much for joining us. :)

It's always interesting to me that in the sharing there's always a gain. You share your own Robert's story only to meet another with a story about a Robert. :) You have such a kind heart--it's contagious.

Happy Holidays!!

robert's sister said...

Thank you, Denise. I gained so much during Epilepsy Awareness Month and started out thinking I'd be giving! I got so much more in return. Happy to join the caregiving.com blog party. :-) Happy Holidays to you too.

RoaringMouse said...

Dear Trish,

Thank you for inviting me to your holiday party as a guest of the Caregiving Holiday Progressive Blog Party.

I've never been to anything like this before, but this is really neat! I'm learning alot and have some comments/questions:

1. Can Seizure dogs work for other types of seizures other then Epilepsy? We have a rescue that we are training to service my husband and have learned that she can and will always tell both my husband and I when he is and where he is having pain and sometimes how bad. I'd like to know how to develop it further in her.

2. My husband has central neuropathic pain. A lay definition is lesions on the spine that cause interruptions in the nerve signals going to the brain. The brain..when there are lesions...gets confused and misinterprets everyday stimuli as pain. In our case my daughter and I tickle fighting or coins in a bowl can be painful for him amongst others. Are there any tricks that you use that I might try with my husband to help him. The seizure part comes in ...in that if the pain is uncontrolled (gas, HCL, and a match with a twist for good measure) he goes into excruciatingly painful violent horrific upper body spasms.

3. Is there education of epilepsy included in emergency management design?

Thanks for having me as a guest! I had fun!

Enjoy the holidays.

RoaringMouse

Kaye Swain - SandwichINK for grandparents and caregivers said...

Hi, I, too, have come to visit for the Caregiving.com Holiday Progressive Blog Party. Thank you for such an interesting article - both about learning more about epilepsy, as well as the info about the Seizure Response Dogs. What a blessing they must be to so many.

I'm thinking of looking into a companion dog for my senior mom in a few more years, both for company and for assistance if she were to fall. It's amazing what a help these sweet companions can be for so many different health issues.

Thank you again for sharing both info and such a sweet and positive attitude. Have a blessed holiday party.

robert's sister said...

Kaye, Thank you for stopping by! I've never participated in this before but understand you're a veteran at it. :-) I think the companion dogs are so wonderful. Check out the Paws with a Cause organization -- I believe they have dogs for all kinds of assistance and you may be able to find help from them. Looking forward to the "holiday party" all this week.

robert's sister said...

Hi, Roaring Mouse! Thanks for joining me here as part of the caregiving.com blog party. What fun! You ask great questions and it's also nice to know a little more about your caregiving situation. My husband has severe, chronic back pain from a car accident years ago (a drunk driver rear ended him). It sounds like your husband has a lot more going on with his pain but I do understand how awful it is to see someone you love in pain. My husband has an intrathecal pump which releases pain medication directly into the spine (he's had it for a while and is due soon to have it replaced since the batteries go out every few years).

Back to your questions. I don't know much about assistance dogs but do know they can be used for all sorts of situations. Seizure dogs can't actually predict a seizure but can help out in the event of one. There are reports that dogs can sense the seizures, however, when they have been with the person for quite some time. Dogs are quite amazing!! Check out the Paws with a Cause website as, I believe, they have dogs for all sorts of situations.

Unfortunately, I don't have any tricks to be able to figure out when a seizure will strike. There are definite triggers (like missing meds, of course or being tired) but most of the time, it's a surprise. Some people have an aura before a seizure (Rob does at times) and this allows a couple of seconds to sit if standing. Otherwise, it's a matter of being prepared to catch him when he's walking and keeping him in safe situations. He doesn't always make safe decisions so I have to help him out with that. :-)

I'm not sure what you mean by your 3rd question but it reminds me that even at his neurologist's office, there is a dearth of epilepsy information in the waiting room. I'm planning on creating a few pamphlets about epilepsy to leave there. Let me know what you meant by your 3rd question and I'll be happy to try to answer it. Thanks again for stopping by and I'm sure we'll talk again!

Angela V. McKnight said...

Hello Trish,

It is a pleasure meeting you. I came to know you through Caregiving.com's Holiday Progressive Blog Party. I commend you for being such a great caregiver. It takes a lot to care for a sick loved one, but you are doing a great job! I look forward to readming more of your blogs. I hope your brother is doing well! :)

RoaringMouse said...

Hi Trish, Thanks for your answers...they give me a lot more insight then you might think. And, I will be following up on them.

As to question 3, I advocate heavily for "equal accessibility to emergency management resources for Persons with Disabilities." The mission found me when I was 9 mo pregnant with our first child and my husband was only 6 mos recovered from his spinal cord injury. At that time a hurricane was upon us and we learned there "zero" (that includes "anyone" you can think of..) resources available to help us out. Since that time starting in Florida and now here in Georgia I sit in on several committees challenging emergency management planners to consider the varieties of disabilities and what they might do when encountered and/or how to accommodate. In my five years I've never heard of epilepsy being represented. Is there a brochure to educate first responders or is there someone I should contact to bring before the local group I work with? I also take the information I acquire and use it with my contacts from the Florida Keys all the way to Washington, D.C. Any thoughts would be most appreciated!

Thanks again for hosting at the Caregiving Progressive Blog Party!!

RoaringMouse

Jane said...

Hi Trish:

Thank you so much for all of your wonderful stories of others with epilepsy and all the facts about it.

I know exactly how it feels to care for someone who has an illness/disease that is underfunded and not much is known about it.

Hugs:o)
Jane~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS

Linda Andersen said...

:-):-):-)

robert's sister said...

:-) back to you, Linda! Hope you're weekend has been great and the weather has been kind to you. I'm chilly because it's down to 40 degrees right now (it's hard to believe I lived in Nebraska). LOL!

robert's sister said...

Jane, Our advocacy is on the same path (education, awareness & funding) -- just different disorders. You are a great advocate for your daughter!

robert's sister said...

Angela, Thanks for stopping by! This blog party is fun although I could use some holiday cookies. :-) Robert had a good day today. I visited him at his care facility and brought him all the supplies he was low on. He beat me at cards and couldn't have been happier. Looking forward to getting to know you more!

robert's sister said...

Roaring Mouse, What a great mission you are on and I can see how you got on that path. How frightening to be nine months pregnant, caregiver to your husband and have a hurricane barreling down on you with no emergency plan. People with epilepsy should be considered when doing an emergency plan since they are so dependent on their medications for seizure control. Robert still has uncontrolled seizures but if he didn't have access to the medications he currently has, his seizures would be non-stop. Frightening. Because of your location, I think you would be best helped by the Epilepsy Foundation of Florida (http://www.epilepsyfla.org/). They have been very supportive of my education efforts through FB and Twitter and may be able to point you in the right direction. Thank you for your efforts with this and I'm sure we'll talk more about your husband's situation.

June Sockol said...

Hi Trish ~ It's sad how so many really are affected by Epilepsy. Just like Autism, it effects the entire family, not just the person with the disability.

Trish, you are such a giver. You're doing such a great job informing everyone. I've certainly learned a lot from you and will continue to share your cause :)

robert's sister said...

June, I know you understand what it means to have the entire family affected by a disability and I appreciate your support! Wishing you all a fantastic week.