Epilepsy Awareness Month: What Epilepsy Means To Me

Epilepsy Awareness Month begins TOMORROW!  Robert and I do our best to spread awareness and education about epilepsy every month but November is special because it’s official.

Robert on Epilepsy Awareness Day

Last year, Robert’s Sister posted 30 Facts in 30 Days.  Whew – it was whirlwind of research and writing and posting on Facebook and tweeting (fyi, I think I may be addicted to Twitter.  It’s a problem). J

Along with the facts, we met a few “Faces of Epilepsy” which continued our “Awareness Month” into December (that's me - spreading awareness unofficially).  

Here it is November again and I am really excited about the 2012 Epilepsy Awareness Month.  I even hear a drumroll in my head (or maybe it’s the neighbor kid practicing for band). 

Robert’s Sister is going to attempt 30 Interviews in 30 Days!  Ack!  I don't know if I can do it but I'll certainly try.  So far, there will be interviews with people who live with epilepsy every day.  There will be interviews with people who run non-profit organizations to help those with epilepsy.  There will be interviews with people who have a friend or relative with epilepsy.  There’s even an interview for you dog lovers out there – someone whose dog has epilepsy. 

The people who agreed to be interviewed all have a unique story to tell with one unifying theme: epilepsy has affected their lives in some way.  I greatly appreciate the time these people have taken out of their busy lives to tell me what epilepsy means to them so others can hear their story and not feel alone and I’m sure you will too!

There’s still time to be interviewed!  If you are interested, please contact me at robertssister@att.net.  There can’t be too many stories to tell and if we go into December, I’m fine with that too!  Awareness isn’t just for November.  (Plus, I really want to meet my goal of one interview a day! Help!).

Be sure to follow me on Facebook and Twitter using @Robertssister1 so you don’t miss out on these terrific, honest and sometimes gut-wrenching interviews.

Because sharing stories, advocating for Robert and educating about epilepsy is What Epilepsy Means To Me.  (Hey, I might even interview myself!).

Caregiving Seminar in Sacramento: June 24

Caregiving.com is coming to Sacramento!

I’ve written about Caregiving.com before because I have found them to be the best online support group for caregivers. Having the availability of support online when the nature of caregiving can be so isolating, has been a comfort to many caregivers.

Denise M. Brown knows caregivers and knows how to provide support for them.  Denise founded Caregiving.com in 1996 and has built a wealth of resources, online support groups and a network of connections in order to selflessly serve caregivers.

Denise will be in Sacramento on June 24 to present “Telling Your Truth So You Can Build Your Team.” This workshop will provide the perfect blend of break, education and support for caregivers.

As an added bonus, lunch will be provided and there will be fabulous door prizes!  (The person in charge of the door prizes is awesome at putting prizes together so you won’t be disappointed!).

Denise says, “In this 90-minute workshop, you'll voice your truths -- about your experiences, your worries, your concerns and your guilt. In essence, you'll discuss your truths: The ones you wear on your face (“my public truth”) and the ones that weigh on the hearts (“my private truth”). Once you've discussed your truths, we'll help you form your team of support, so you can face your inner truths with action plans and solutions.”

The event will be held 12 – 3 p.m. on Sunday, June 24 in the clubhouse of the Country Squire Estates (720 Oak Hill Drive, Sacramento).

The cost for the lunch and workshop is $10 but is only $8 if you RSVP before June 15.

RSVP by June 22rd to Bette, bette@caregiving.com or register online at www.caregiving.com/june-24.

I hope to see you there!

Why I’m Wearing Purple on March 26

Breakfast of Champions!

March 26 is the Global Day of Epilepsy Awareness (otherwise known as “Purple Day” thanks to the Purple Day Organization ). 

Purple Day is about spreading awareness and education about epilepsy which, hopefully, leads to more research so this disorder can be cured. 

Yes, cured.  The goal is to stop epilepsy in its tracks.

On Monday, I won’t just be wearing purple but I will be sharing purple cupcakes (because what better way to get people’s attention than with chocolate?). 

Hey, you had me at “cupcakes!”

The Purple Day Organization further explains what Purple Day is about: “Purple Day was founded in 2008, by nine-year-old Cassidy . . . Cassidy's goal is for people with epilepsy everywhere to know they are not alone.”

To me, Purple Day is about my brother Robert.  Robert has waited very patiently his whole life to find a cure.  He’s had two brain surgeries, he’s tried most medications on the market and he has participated in a study for the Deep Brain Stimulator. 

He’s waited for a cure since he was five years old. 

The seizures continue but so does Robert.

Robert is willing to try anything to stop his seizures.

He prays every night that God will take his seizures away “completely.” 

He’s never lost his hope or his faith.

I want to do what I can so Robert (and the millions like him) can finally see a cure for epilepsy.  I will do what I can to make people aware of epilepsy and to educate people about epilepsy.

That’s why I’m wearing purple (and eating  . . . I mean, baking . . . so many cupcakes). 

A few facts about epilepsy (for more, please read the epilepsy awareness month series). 

1.  Robert is one of almost 3 million people living in the United States and 50 million worldwide with epilepsy.

2.  Epilepsy is the 3rd most common neurological disorder behind Alzheimer’s Disease and Stroke.

3.  Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  (Yes, COMBINED!)

4.  It is a MYTH that a person can swallow their tongue during a seizure.    Also, nothing should be placed in a person’s mouth during a seizure.  The best way to help a person having a seizure (if they are lying down) is to help keep them safe.  If possible, roll them over to their side and place something soft under their head. 

5.  According to the CDC, “epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.” 

Please join me in wearing purple, grab a purple cupcake and help me spread awareness about epilepsy.  Thank you!

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!

Winding Down Epilepsy Awareness Month

Epilepsy Awareness Month started with me thinking I was going to raise awareness for epilepsy!   I was going educate people!   I was going to put on my advocacy hat and put those skills to the test!  As the self-appointed spokesperson for my brother, I was going to let people know what it’s like to live with epilepsy!  

I had big plans.

I almost feel guilty about it (because that’s what I do) but realize I gained so much more from Epilepsy Awareness Month than I gave.  I became aware of many, many stories of others living with epilepsy or caring for someone with epilepsy.  People educated me about epilepsy.   I saw just how many other advocates there are out there but know there’s room for more!  People told me what it was like to live with epilepsy or care for a loved one with epilepsy.  I learned a few facts along the way, too, as I did my research to come up with one fact a day about epilepsy and shared them on my Robert’s Sister Facebook page , through Twitter (@robertssister1) and each week here, here, here and here.    

The last few days of the Epilepsy Awareness Month included several facts that were new to me. 

Fact 27:  Men with epilepsy have their own hormonal changes which can be caused by both the seizures and from the antiepileptic drugs.  These changes can affect mood as well as reproductive function and fertility.  (Many thanks to reader and fellow caregiver, Cindy Mitchell, for sending along articles addressing this topic)!

Fact 28:  According to the CDC, “epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.”  Yet another reason to increase awareness and funding for research.  (Sometimes this month I was compelled to editorialize the facts).

Fact 29:  New research (from Science Daily) indicates that people with epilepsy who used the older generation antiepileptic drugs (such as Phenobarbital, Dilantin, Tegretol, Depakote) for extended periods of time may be at increased risk of hardening of the arteries.  This information shouldn’t dissuade anyone from a treatment that is effective in treating epilepsy but this information may be useful when talking treatment options with your neurologist.  Robert has been on all of these at some point in his life (and still takes Depakote) so I’ll be talking to his neurologist about this study (I'm sure his neurologist loves me).   Of course, this is a trade-off – many times the side-effects are something people with epilepsy have to live with in order to gain seizure control.  Another reason why more research is needed.  (Obviously, I could never be an unbiased news reporter).

Fact 30:  The last fact of the month is something I’ve come to realize even more this month.  Epilepsy affects everyone in different ways and as many people as there are with epilepsy (almost 3 million in the U.S. alone), there are that many ways to live with epilepsy.  Epilepsy presents challenges (stigma, necessary treatments and their unpleasant side effects, discrimination, interruptions from the seizures) but finding support and information is possible.  Living well with epilepsy, living with hope for a cure is possible.  I’ve seen it this month with the fantastic people I’ve met and know it is true with my own brother, Robert. 

Thank you so much for joining me during Epilepsy Awareness Month.  I’ve met some extraordinary people this month who I will share with you in the coming days.  For now, let’s continue to search for a cure and better treatment and bring awareness (and more funding) to epilepsy. 

Please share what your experience has been during Epilepsy Awareness Month 2011. 

This Week in Epilepsy Awareness

There are only a few more days left in November, the designated Epilepsy Awareness Month, but I plan to continue increasing epilepsy awareness and supporting other individuals and organizations doing the same even after November ends.   I have learned so much while researching epilepsy and have enjoyed sharing a fact a day.

In case you missed past weekly recaps, please visit the first few facts, week two, and week three.

We’re in the home stretch now!

Fact 20:  According to the fact sheet from Epilepsy Foundation of Florida, “the leading non-medical problem confronting people with epilepsy is discrimination in education, employment and social acceptance.”  Here’s the solution:  Everyone who discriminates - knock it off!  (I thought I’d try to be a bit subtle this Sunday morning).

Fact 21:  Statistics don't lie - Epilepsy research needs better funding.

2005 National Institutes of Health Research Funding Statistics (courtesy of CURE Epilepsy): 

Alzheimer’s: 4.5 million affected; NIH research money:  $149 per person;

Epilepsy:  2.7 million affected; NIH research money:  $39 per person
Autism: 1.5 million affected; NIH research money:  $68 per person;
Parkinson’s:  1 million affected; NIH research money:  $225 per person;
Multiple Sclerosis:  350,000 affected; NIH research money:  $314 per person;

Fact 22:  Rules for obtaining a driver’s license vary by state but, generally, each state requires people to be seizure free for a certain period of time, ranging from a couple of months to over a year, before they are able to obtain a license.  Other considerations such as the types of medication a person is on to control seizures are factored into the decision to grant a driver’s license.  In California, there are two types of Medical Probation.   One is for drivers who have 3 – 5 months of seizure control and the other is for those with 6 months or more seizure control.  Check the DMV in your state to get the specific rules. 

Fact 23:  What is epilepsy exactly?  First, epilepsy is a disorder; not a disease.  A seizure can be described as an electrical storm in the brain.  Normal brain function limits the spread of electrical activity but a seizure happens when this breaks down and allows this electrical storm to spread in the brain.  A person is thought to have epilepsy when they have had at least two seizures.    

Fact 24: A diet related fact for Thanksgiving!  A Ketogenic diet is sometimes used to treat epilepsy in children.  This is an extremely high fat, very low carb diet and was first developed in the 1920s after it was noticed that when people with epilepsy fasted, they had fewer seizures.  This diet is generally more successful in children but a doctor should be consulted before trying it. 

Fact 25:  In almost 75% of cases of epilepsy, no cause can be found.  So many conditions can cause epilepsy or are related to epilepsy that it’s difficult to track down the exact cause.  It can be caused by an abnormality in brain wiring, imbalance of brain chemistry, injury, poisoning, brain tumor, stroke, Alzheimer’s, cerebral palsy, or any combination of these (just to name a few).   Medicinenet.com says “Researchers believe that some people with epilepsy have an abnormally high level of excitatory neurotransmitters that increase neuronal activity, while others have an abnormally low level of inhibitory neurotransmitters that decrease neuronal activity in the brain. Either situation can result in too much neuronal activity and cause epilepsy.”

Fact 26:  Women living with epilepsy have unique issues to manage.  For instance, some antiepileptic drugs can interfere with the efficacy of oral contraceptives.  Half of women with epilepsy report increased seizures around the time of their menstruation and it’s been found that menopause and perimenopause can cause changes in seizures as well. 

Thank you for reading and I hope you learned at least one thing new about epilepsy!  Please share your experiences with epilepsy in the comment section. 

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. 

Another Week of Epilepsy Awareness

Some excellent organizations are helping raise awareness about epilepsy.  This is not a new condition but epilepsy has been kept in the shadows for far too long for reasons that basically boil down to fear.  The Epilepsy Foundation, the Talk About It Organization and CURE: Citizens United for Research in Epilepsy are just a few of the organizations doing great work to spread awareness and education and raising money for epilepsy research. 

My own efforts this month are concentrating on education and awareness.  My Facebook page has a new fact each day and you can follow me on Twitter (@robertssister1) to get facts about epilepsy and how they relate to Robert.

I’d love to know if the facts posted last week are new to you and would enjoy learning facts from you!  Post your own fact in the comment section and I’ll be sure to credit you if I use the information this month. 

Did you know . . .

Fact 6: It is a MYTH that a person can swallow their tongue during a seizure.    Also, nothing should be placed in a person’s mouth during a seizure.  The best way to help a person having a seizure (if they are lying down) is to help keep them safe.  If possible, roll them over to their side and place something soft under their head.  The tongue swallowing MYTH persists today so please spread the word that this is not true.

Fact 7:  In 1990 Congress passed the Americans with Disabilities Act. According to the World Health Organization, as recently as the 70’s it was legal to deny people with seizures access to restaurants and theatres.  According to The Epilepsy Therapy Project (www.epilepsy.com), there were even laws forbidding people with epilepsy to marry or become parents and some states allowed sterilization!  Can we all agree to just stop discriminating – whether or not there's a law telling us not to?

Fact 8:  Most people with epilepsy live a full life but the mortality rate among people with epilepsy is approximately 2 to 3 times higher than the general population.  Up to 50,000 deaths occur annually in the U.S. from SUDEP (Sudden Unexplained Death in Epilepsy), prolonged seizures, and other seizure-related causes.  When Robert was 15 he came very close to being a statistic when he had a seizure in a swimming pool.  He was in a coma for a few days but survived (he apparently couldn’t pass up more opportunities to beat his sister at cards!).

Fact 9:  Epilepsy surgery is one treatment available for people living with epilepsy.   After surgery, 70% of patients are seizure-free, with 85% having a significant reduction in seizures.  In September, Aurora Health Care conducted a Temporal Lobectomy on Twitter!  Did you “watch” it?  It was exciting and informative!

Epilepsy Awareness: Seizures – How to Help

In my Epilepsy Series last summer, I covered topics of what epilepsy is; how to help with seizures; options for treatment;  living with epilepsy as well as some of the social and economic ramifications of epilepsy.

Because seizures can be so disconcerting and there are still misconceptions about seizures today, I am reprinting some of the information about How to Help with a Seizure:

I forget that seizures can be scary (probably because I’ve witnessed more seizures than I can count and am so used to them) but do realize they can be frightening for someone who has never seen one.  Seizures usually happen without warning although there are some people who experience an aura before a seizure which gives them a brief moment to react (for example, sit down if they are standing). 

Robert has experienced the aura before but it doesn’t happen with every seizure.  He says when he was little he would see things in the colors “red, green and blue.”  He also used to tell us he was able to see cartoons in his head.  I think these must be a little boy’s descriptions of the aura before a seizure.  Robert also tells me he can sometimes fight off the seizures if he feels one coming on.  I’ve always wondered if this is actually true but I don’t doubt the power of the mind so can believe it.

There are a few things to keep in mind if you see someone having a seizure.  First, you don’t have to do anything if the person is having an Absence Seizure (also known as Petit Mal and looks like a brief period of staring).  Robert sometimes has these when we are playing cards and I just wait until it passes (his usually last 10 – 20 seconds).  It’s a good opportunity to peek at his cards but I refrain from taking advantage!

Robert will sometimes tug at his clothes or twitch his hand during a seizure but as long as he is sitting down and not holding anything, there is nothing to do.  Of course, if he is holding a cup or his 7-Up bottle in his hand, I gently try to remove it since there might be a spill involved. Otherwise, the seizure passes quickly and he is able to resume whatever activity he’s doing (usually, beating me at cards). 

For Generalized Tonic-Clonic (or Grand Mal) seizures, there are a few more steps a person can take to ensure the safety of the person having a seizure.  These tips are from the Epilepsy Foundation website (my commentary is in parentheses): 

1.  Keep calm and try to reassure others in the area (remember my rule: only one person can panic at a time in any given situation!);

2.  Do not hold the person down or try to stop the person from moving;

3.  Time the seizure (this is important);

4.  Clear the area of hard or sharp objects;

5.  Loosen anything around the neck that may be constricting breathing;

6.  Put something soft and flat under the person’s head using something like a folded up jacket;

7.  If possible, turn the person over on their side to help keep the airway clear;

8.  Do not put anything into the person’s mouth (least of all your fingers; see below for my “myth buster”);

9.  Do not attempt artificial respiration unless, in the unlikely event, the person isn’t able to breathe after a seizure (this is rare);

10.  Stay with the person until the seizure ends and be reassuring while the person gets their bearings again;

11.  Offer to call a friend or family member if the person is confused when the seizure ends;

It isn't necessary to call 911 every time someone has a seizure but it’s a good idea to call if the seizure lasts more than five minutes or if the person has fallen and hurt themselves.

Myth Buster: A person cannot swallow their tongue during a seizure so there is no reason to be concerned about that.

There are a lot of reasons other than epilepsy that may cause a person to have a seizure (such as a brain tumor, head injury or high fever to name just a few).  As a sister of someone with epilepsy, I would appreciate it if people didn’t assume the person having a seizure was overdosing on drugs. Robert had a seizure in a restaurant many years ago and I overheard someone make a comment based on this assumption.  It was very hurtful and completely unnecessary.  People with epilepsy already have to deal with being looked at negatively because they are different, they certainly don’t need to be accused of causing their own seizure problem too. Heck, even if the person is overdosing, couldn’t they use some compassion as well? 

The main thing to remember is to protect the person from harm when they are having a seizure and to treat them with kindness and compassion afterwards. Hopefully this information makes you a little less fearful in the event you encounter Robert or someone like him having a seizure. 

Have you ever witnessed a person having a seizure?  Have you had one and did people help?  Please share in the comment section and help me spread epilepsy awareness by sharing this post.  Thank you!

Education and Epilepsy – Surgery via Twitter!

Tuesday morning I could not tear myself away from my Twitter feed. The doctors at Aurora Regional Epilepsy Center located at the Aurora St. Luke's Medical Center in Milwaukee, Wisconsin performed a brain surgery and tweeted live updates. Geoff Nestor, who has epilepsy which is not controlled with medications, was the brave subject of Aurora's first epilepsy surgery on Twitter.

The Social Media Director of the hospital and the Digital Communications staff were the ones actually doing the tweeting (surgeons are good but I don’t think they can tweet and cut at the same time!).

Robert had his own epilepsy surgery in the early 90s (which was way before Twitter). Unfortunately, Robert's surgery did not cure him of his seizures but it was interesting to compare what I was reading yesterday to the stories Robert has of his own surgery. He remembers being awake during the surgery and being shown flashcards and asked several questions about them. Geoff was also awake during the surgery, answering questions, giving shout-outs to his wife and two kids and shown images from a laptop instead of flashcards.

During the surgery, information about Epilepsy was tweeted as were comments from Geoff and his doctor, Dr. George Morris and neurosurgeon, Dr. Shekhar A. Dagam.

Did you know?

The brain tissue itself does not have the ability to feel. When we have a headache, it's nerves around the brain we're feeling. (Dr. Dagam)

The brain makes up 2% of the body's weight and receives 20% more blood flow than any other part of the human anatomy.

Mortality rate among people with epilepsy is 2 to 3 times higher than the general population.

Up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures).

After surgery, 70% of patients are seizure-free, with 85% seeing a significant reduction in seizures.

In over 30% percent of patients, seizures can't be controlled with treatment. Uncontrolled seizures may lead to brain damage and death.

Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.

Federal dollars spent on epilepsy research pale in comparison to those spent on other diseases.

I am grateful for the advances in technology which not only medically help but also help educate about epilepsy and other conditions! Read more about the surgery here.

Living with Epilepsy

When I started my latest educational series about epilepsy, I wanted it to contain as much information as possible so people were more aware of this disease. What is it? What do I do if someone is having a seizure? How is epilepsy treated?

I looked up statistics and facts and research studies (learning a lot along the way!) but I also wanted to tell people what it’s actually like living with epilepsy. Since I don’t have epilepsy myself but my youngest brother does, all I can do is share his personal experience of living with epilepsy his entire life. Forty-five years of epilepsy and, in his case, uncontrolled (also called “intractable”) seizures.

Robert’s case is a “worst case scenario” since only 10% of newly diagnosed cases of epilepsy fall into the uncontrolled category. Many, many people have their seizures controlled with medication, surgery, diet (or just stop having seizures for no known reason!) and are able to hold down a job, get a driver’s license and raise a family. Those with controlled epilepsy live with it by managing their rigid medication schedule and frequent visits to the neurologist in between soccer games, date nights with their spouse and grocery shopping (“normal” stuff). Of course, there may be breakthrough seizures that put a glitch in these activities but the seizures are manageable for many people living with epilepsy.

How does someone with uncontrolled seizures manage to live with them? If there’s one thing I’ve learned from Robert it is that you play the best hand you can play with the cards you are dealt – and you will always come out winning! (Unless you’re me playing an actual card game against Robert and then, well, I’m losing).  :-)

How is Epilepsy Treated?

At Robert’s recent EEG appointment, I overheard the nurses talking about epilepsy and how it is a “forgotten disease.” They said someone needs to shine a light on epilepsy and thought if a celebrity had a child with epilepsy it would help raise funds for research. I don’t know about that since there are celebrities with epilepsy in their families and the disease still hasn’t really been one to “catch on” as far as funding.

I’m not a celebrity but am all for shining a light on epilepsy!

Epilepsy is the third most common neurological disease in the United States behind Alzheimer’s Disease and stroke. According to the Epilepsy Foundation its prevalence is greater than cerebral palsy, multiple sclerosis and Parkinson’s disease combined.

Before getting side-tracked with a slight challenge presented by the Building & Planning Department of our city, I was in the middle of an educational series about epilepsy which started with what it is and how to not be fearful of seizures (and even how to help if someone is having one).

There is so much to discuss about epilepsy but people first searching for help want to know about treatment options.

Robert falls into the 10% of those whose epilepsy cannot be controlled even with optimal medical management. Robert has probably tried every possible treatment available but continues to have several seizures a week (most likely several per day but many of the absence seizures go unnoticed). Robert has always been willing to try new medications or to participate in research studies in order to find a way to stop his seizures and to help others.

Like any medical challenge, treatment of epilepsy has evolved over the years and, with any luck, will continue to evolve until everyone is able to enjoy complete seizure control (hey, I can hope!).

Seizures – How to Help

In my last post, I gave a brief overview of epilepsy (what it is and isn’t, how people get epilepsy and the types of seizures a person may have).

Today is all about what you can do to help if you see someone having a seizure.

I forget that seizures can be scary (probably because I’ve witnessed more seizures than I can count and am so used to them) but do realize they can be frightening for someone who has never seen one. Seizures usually happen without warning although there are some people who experience an aura before a seizure which gives them a brief moment to react (for example, sit down if they are standing).

Robert has experienced the aura before but it doesn’t happen with every seizure. He says when he was little he would see things in the colors “red, green and blue.” He also used to tell us he was able to see cartoons in his head. I think these must be a little boy’s descriptions of the aura before a seizure. Robert also tells me he can sometimes fight off the seizures if he feels one coming on. I’ve always wondered if this is actually true but I don’t doubt the power of the mind so can believe it.

There are a few things to keep in mind if you see someone having a seizure. First, you don’t have to do anything if the person is having an Absence Seizure (also known as Petit Mal and looks like a brief period of staring). Robert sometimes has these when we are playing cards and I just wait until it passes (his usually last 10 – 20 seconds). It’s a good opportunity to peek at his cards but I refrain from taking advantage!

Epilepsy: What is it and Can I Catch It?

Since Robert is doing his own educating about epilepsy, I was inspired to do a little educating about it too. 

First, the facts:

What is it?

Epilepsy is a medical condition that produces seizures (it’s also sometimes called a “seizure disorder”). Seizures are caused by an abnormal surge of electrical activity affecting all or just a part of the brain. If a person has two or more unprovoked seizures they are considered to have epilepsy. Epilepsy does not discriminate and affects all races, both sexes and is found in all countries.

Epilepsy is not a mental illness nor does it cause mental illness and epilepsy is not caused by demons (as was thought 3000 years ago).

Depending on the source, between 2 and 3 million people in the United States have epilepsy and, approximately, 50 million people worldwide have it (according to the World Health Organization). Epilepsy can be treated in approximately 70% of the cases (which means a person is seizure free for 5 or more years while on medication). 75% of those cases can eventually be taken off mediation. Ten percent of patients have uncontrolled epilepsy even with medication or other medical means such as surgery (this is the category Robert falls into).

How do you get it?

Don’t worry, you can’t catch it.

For 6 out of 10 people with epilepsy there is no known cause. For those 4 out of 10 other people, the cause could be a brain tumor, a blow to the head, loss of oxygen or trauma during birth or a stroke that deprives the brain of oxygen. High fevers in very young children can also cause a seizure.

We don’t know what caused Robert’s epilepsy but, according to our Mom, he didn’t have an easy birth. Mom broke her tailbone while in labor with Robert and the doctor had to use those barbaric clamps to pull him out (we’ll never know why they didn’t just do a C-Section since there were obviously some issues with him wanting to come out!). Finding out what caused Robert’s epilepsy is not really important to me. I’d rather concentrate on helping him now than looking backwards.