Saturday, November 19, 2011

Week 3 of Epilepsy Awareness Month

Robert was diagnosed with epilepsy 40+ years ago but, this month, I found that I still have so much to learn about epilepsy.  Researching a variety of sources to share one fact a day has been tremendously helpful to me and, I hope, to others.  I have become aware of so many organizations passionate about advocating for a cure which fills me with such hope and optimism that it can be done!

I’ve also met many wonderful, hopeful, tenacious, persistent and resilient people who either live with epilepsy or care for someone who is living with epilepsy.  I almost feel guilty (you know how I am) because I have personally gained so much from this Epilepsy Awareness Month – and, it’s not even over!
In case you missed any of the facts last week, I am happy to share them here (I’ve added links to get more information and expanded a bit of the information also since we have more room here than Twitter or Facebook provides).   The first two weeks of facts can be found here and here. 

Fact 13:  Inspiration and motivation to help sometimes comes from having a personal experience with epilepsy (and other conditions or diseases).  My passion for epilepsy education and awareness stems from having a 46 year old little brother with lifelong, uncontrolled epilepsy.  Greg Grunberg (he starred in the TV show Heroes) started the Talk About It Organization because his son has epilepsy. They have a terrific website where lots of different people do actually talk about epilepsy.  Susan Axelrod (whose husband, David Axelrod, was a senior advisor to President Obama) started the organization CURE: Citizens United forResearch in Epilepsy because their daughter has epilepsy.  These are just two of the organizations doing great work to spread awareness and education and raising money for epilepsy research. 
Fact 14:  The CDC reports that as many as one third of people with epilepsy and recent seizures have not seen a neurologist within the past year.  The Epilepsy Foundation and The National Association of Epilepsy Centers provide information about where to find epilepsy specialists.  A referral from a primary care physician can be a good place to start too.  I suspect not being able to pay for care and medications might be one reason people haven’t seen a neurologist.  If that’s the case, check out Medicaid benefits in your state.  Start here if you live in California.  It can be a difficult process to get through but worth it to have access to a neurologist.

Fact 15:  For the 30% still searching for seizure control, approval of new medications brings some hope.  A few new medications coming on the market in 2012 are Potiga (recently approved by the FDA), Clobezam (also recently approved by the FDA but used elsewhere for years) & Sabril (which has been used in Canada for years).  Like any other anti-seizure medication, there are serious side-effects to watch out for (Sabril, for instance, causes vision issues in as many as 1/3 of those taking it).  If current medications aren’t satisfactorily controlling seizures, these might be worth a question to the neurologist.  
Fact 16:  Did you know November is also National Caregiver’s Month?   (Okay, it’s also National Raisin Bread Month but, as most of you know, I can’t cook so that’s less of a priority.  Although, I do love a good raisin bread.)  Back to the epilepsy facts . . .

Mood disorders are related to epilepsy and can be a side effect of either the seizures or the anti-seizure medication.  Caregivers can help provide valuable information to the neurologist about possible depression in the person with epilepsy as they can sometimes spot the signs of it first. 

Fact 17:  The word epilepsy is derived from the Greek word for attack and was one of the first brain disorders described (it was mentioned in Babylon more than 3,000 years ago).  Hippocrates, in 400 B.C., was a forward thinker – when others thought those with epilepsy were “possessed” with this “sacred” disease, he suggested epilepsy was a disorder of the brain.  Thank you, Hippocrates!

Fact 18:  Here’s one for all the animal lovers out there!  Seizure Response Dogs can assist a person with epilepsy by pushing a life-alert button, retrieve a phone for the person as well as comfort and protect the person during a seizure.   I haven’t been able to find any resource to say dogs can be trained to alert a person with epilepsy to an oncoming seizure but many dogs do develop this ability (especially if they’ve been with the owner a long time).   Our treasured dog, Wizard, would always lie on the floor next to Robert when he visited and we thought Wiz sensed something in Robert that made Wiz stay close.   
PAWS With a Cause provides Service Dogs trained to deal with seizures as well as other medical conditions.

Fact 19:  In Africa, mistaken beliefs about epilepsy are still prevalent.  People believe epilepsy is contagious and believe people with epilepsy are “bewitched.”  These beliefs stand in the way of effective medical treatment.  One 2005 study found that “in Zambia fewer than 4% of people with epilepsy had sought medical care while all had been to a traditional healer.”  Raising epilepsy awareness must be a global endeavor!
Please follow me on Twitter (@robertssister1) or like the Robert’s Sister Facebook page to get the rest of the daily facts this month.  Please also share your own epilepsy fact in the comment section and help spread Epilepsy Awareness! 


Anonymous said...

Thanks for taking the time to share your info. Sometimes as a caregiver living in a small rural community, it's easy to throw a "pity party" thinking I'm the only one going thru this. But, because of the Internet, FB, Twiiter, etc, I realized there are many living with the same frustrations and stress I do caring for a loved one with uncontrolled Epilespsy. After reading so many stories this past month, I realize there are many who have situations far worse than mine. I now have several new links, FB pages, etc to share this journey with. I'm trying to step out of my own comfort zone, take some deep breaths and reach out to help spread awareness about Epilepsy.....Anyway, thanks again. I totally enjoyed learning about Robert. He reminds me a lot of my son, Jason...

Got Sunshine, send to ND...we have snow & cold I could send in return....:-):-):-)

Linda Andersen

Trish Hughes Kreis said...

Linda, It is hard to feel like we're alone. I always thought Robert was a "special case" of epilepsy and that there weren't people like him. Boy was I wrong! It really helps to share our stories and connect with others in similar situations. The internet is a great way to stay connected. Jason & Robert do have a lot of similarities. As far as that sunshine . . . we have rain & wind today and a high of 55 (which probably seems pretty warm to you right now!). We grew up in Nebraska so I wouldn't mind a little snow. :-) Enjoy your weekend, Linda.