Wednesday, November 30, 2011

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. 

Monday, November 28, 2011

Holidays & Tradition

We love Christmas at our house.  Oh, who am I kidding?  We love all the holidays!  Any excuse to decorate the house and yard (Halloween, Christmas) or cook a big meal (with homemade pecan pie) for the entire family (Thanksgiving) or watch fireworks from the local Futon Shop parking lot (4th of July and a blog post all its own).
Only the beginning!
We have our holiday traditions although some of them may not be for everyone (it takes a special person to want to watch fireworks from the parking lot of a furniture store).  One of our traditions at Christmas is to decorate the outside of the house  with hundreds of lights, candy canes, snowmen, blow up penguins – you name it, we probably have it and if we don’t it’s because it won’t fit in the yard.

Confession: we have so many holiday decorations that my husband gave me a birthday gift of a shed to store them all in!
I know this isn’t very “green” of me to indulge this tradition but it is fun, it brings us joy to set it all up and brings joy to people driving by our house to look at the decorations.  It even brings the electric company joy (okay, that’s my least favorite part aside from taking them all down).

Yesterday, hubby hauled all the decorations out of the shed (no small feat for someone with chronic back pain) and my daughter and I went to work setting everything up.  Once hubby recovered from the hauling, he helped hang snowflakes from the gutters.  Robert was visiting for the Thanksgiving weekend but, at first, didn’t care to sit outside to watch the transformation.  He thought it would be too cold outside; plus, he had a word search puzzle to finish.
Midway through the decorating, Daughter and I had to make a trip to Target to get more lights (hey, it was needed - this was the year many of the lights decided to not work and there were those cute snowflakes we needed more of).   When we returned, Robert joined us on the porch wearing a warm jacket and watched us blow up penguins, put together a train and install solar candy canes along the sidewalk.  We’re getting more “green” this year after all!

We were thrilled with the result after working on it all day (and we’re not even done yet – there are always more lights to hang!).  Robert looked at the finished product and proclaimed it looked “excellent” which is saying a lot, considering his usual response to anything is a very understated, “that’s nice.”
Daughter, husband and I had to agree: it was pretty excellent!

What traditions do you enjoy with your family?  Anyone else enjoy decorating to the extreme?

Sunday, November 27, 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). 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. 

Friday, November 25, 2011

Giving Thanks

My blogging group is made up of artists, writers, entrepreneurs, retired actors, illustrators, moms, political activists, dog rescuers and computer experts – and that’s just two of them (I kid).  All have great hearts and I am fortunate to call them my friends.  Occasionally, the group comes up with a “challenge” and we write about a particular topic.  Last month, we wrote a list of random things about ourselves (and I did one for Robert as well).  Appropriately enough, this month we are writing about what we are grateful for.  For starters, I am grateful to be a part of such a diverse, passionate, kind group of individuals!

I think the rest of what I am so grateful for can be summed up in one word: “family.”  (No, the blog post is not ending now.  Have you ever known me to write a short post?).   I couldn’t ask for a better family.  Everyone always says that but I actually really do have the best family and I hope you think you have the best family too because there’s enough room for a lot of “best” families.  Why am I so grateful for my family?
1.       I’m grateful to my husband for his clever ideas.  “Leave the plastic wrap on the new sofa bed mattress that Robert is going to sleep on.”  Brilliant.  Hubby just saved us $30 for a mattress cover.  I’m also grateful that he is willing to spend the day with Robert (and have a great time, too!) so I can hang out with my daughter shopping.
2.       I’m grateful for my daughter.  Yeah, she’s 22 and we were supposed to have gone through that difficult period where mothers and daughters don’t get along but we missed it because we were laughing so much. 

3.       Even though he sometimes drives me crazy because he doesn’t pick up on the life lessons I’m trying to teach him, I am grateful for my step-son.  He chose to join the Air Force and I am thankful to him for his commitment to our country.  Now, about that money you owe me. . .  

4.       I am grateful to my step-daughter who is strong-willed and opinionated (hmm, sounds like someone I know!) but would have all of our backs if the situation called for it.  

5.       I can’t forget how thankful I am to all of our animals (of course, they are part of the family)! Years ago, my mom called our house “Noah’s Ark” because of the menagerie we had.  We still have a slew of animals and I couldn’t imagine life without any of them.

6.       I’m grateful to my Other Brother.  Other Brother and I have been close since our mom brought him home from the hospital close to five decades ago and I would climb into his crib to take care of him.  I can always count on his sound advice and good sense whenever I need it and know that no matter how busy we get with our lives, we can make each other laugh within two seconds of seeing each other.

7.       I am grateful to my in-laws, especially my mother-in-law because she became friends with my mom when Hubby and I first married and has always been a mom to me but even more so after my mom died.  I treasure her for that.

8.       I’m grateful for Robert.  We were never close growing up but in these last few years he has taught me to slow down and appreciate the little things (like a good card game and a brain that doesn’t randomly misfire).  He has also shown me how someone can be happy with nothing more than a word search puzzle, a great sense of humor and his belief in God. 

9.       I am also grateful for the friendships I have and consider these friends a part of my family.  My best friend is there for me whether I am happy, cranky or overwhelmed and knows exactly what to do in each situation (which usually involves coffee or chocolate).  I am truly grateful for my friendships with other caregivers who have enriched my life this past year.  I am forever indebted to them.

I am grateful for all of these people not just this month or just on Thanksgiving, but every day of the year. 
Thank you for indulging me this expression of gratitude.  Even though Thanksgiving is over, please grab a piece of leftover pie and share what you are thankful for. 

Sunday, November 20, 2011

A Lazy Sunday with Robert

6:45 a.m.:  Robert and the dogs sleep in!  Woohoo!  I go downstairs to let the dogs out.  From the sofa bed in the family room, Robert says “good morning!”  Good morning, Robert.

6:46 a.m.:  I give morning meds to Robert. 
6:50 a.m.:  Robert sits up and takes his soaking wet night shirt off as he tells me it’s dry. 

6:55 a.m.:  Let the dogs in; dry their paws since it’s raining outside.  Robert moves on to taking off his socks.
7:05:  Robert puts on his helmet and pushes his walker to the bathroom.  He takes his wet pajama bottoms off and I grab a pair of disposable gloves.  Note to self: invent a better diaper.

7:10:  Wet briefs are placed in the garbage bag I hold out for Robert.  Robert uses the bathroom while I strip the bed and throw a load of sheets, pajamas and blankets (just for good measure) in the washer. I turn the sofa bed back into a couch.
7:25:  Fill the sink full of soapy water and give Robert a warm washcloth to wash off.  I help as needed.

7:50:  Washed and dried, Robert starts to get dressed.  It’s Sunday which means he’ll wear a white shirt.
8:05:  Hubby starts making blueberry muffins.  Yum!  I throw another load of bed linens in the washer. 

8:15:  Robert finishes dressing and pushes his walker to the couch.  He takes his breakfast meds and starts to watch a church program that I’ve recorded for him.
8:35:  Muffins are ready!  Robert enjoys the muffins and makes sure he eats every last crumb.  Hubby asks if he wants another.  You have to ask? 

9:30:  Robert finishes with muffins, banana, cereal, juice & milk and returns to the bathroom to brush his teeth.
9:55:  Back to the couch to finish watching church.  I have another church program recorded for him so he’ll be busy for a while.

10:30:  Robert is sleeping through church.
12:30: I give Robert his lunch meds and start to make grilled cheese.  It’s a rainy day so grilled cheese and soup sound fabulous.  I find some sort of meat & pasta soup in the cupboard that teenage son hasn’t yet found so heat that up for Robert. 

12:40: Robert tries to eat half of his sandwich in two bites.  I scold him as he tries to shove bite #2 in his mouth.

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. 

Saturday, November 12, 2011

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 (, 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!

Thursday, November 10, 2011

Piecing Together the Puzzle of the Brain

Robert has had uncontrolled epilepsy his whole life.  At 46 years old now, after numerous head injuries (even with a helmet – yeah, that’s a neat trick), surgeries and medications, Robert is not quite the person he used to be. 

Robert finished high school and even took a few community college courses many, many years ago.  Now, he falls asleep reading a book after two pages (I’m trying to not take that personally since it was my book) but he can finish word search puzzles like there’s no tomorrow.  Most days he can’t remember what he had for lunch and sometimes he even forgets he ate lunch (even though he always enjoys eating it).
Robert was able to ride bikes when we were kids, figure out the bus system as he got older (he never was allowed to drive although our dad let him drive once because he was irresponsible that way) and was able to walk for miles to the mall or to the movies.  Today, he uses a walker to keep his balance, drags his right foot while walking and occasionally (okay, often) trips. 

For many years, Robert was able to manage his own medications (taking them and picking them up from the pharmacy) and all of his doctor appointments.  That would be virtually impossible today and so he has people give him his meds on time and I take him to his appointments. 
The decline in his motor function and cognitive ability has been dramatic when comparing him at age 20 to now at age 46. 

I want to know why.  Is it the uncontrolled seizures?  They can, after all, cause brain damage.  Is it all the head injuries?  Perhaps the medications are clouding his “normal” functioning?  Maybe it’s something else completely.   
Robert’s neurologist gave us a referral to a Memory Specialist and to a Neuropsychologist.  The appointment with the Memory Specialist was on Halloween; we see the Neuropsych in a couple of weeks. 

We (as in I) filled out a lengthy form before the visit and answered a gazillion (I counted) questions about family history, present behavior, past accidents and surgeries, current medications and goodness knows what else. 
The Memory Specialist arrived in the tiny exam room with another neurologist and a med student.  The three of them sat across from us and asked Robert several questions, glancing over in my direction every now and then for confirmation of his answers.  They asked him to remember 3 words but he only remembered one after being given multiple choice answers.  He couldn’t remember the city he lived in but remembered his brother lived in Danville.  He knew the date but thought it was Sunday instead of Monday.  He didn’t know the party affiliation of the president but guessed it was “the American party.”  He did some math problems (subtracting backwards, mainly) and I was a little worried about this section myself (because, of course, I was silently answering all the questions and remembering all the words just to be sure I could).

Robert was asked to write a sentence.  I had no idea what he would write or if he would be able to do so and I was fretting like he was taking the SAT and his college career depended on it, but as I glanced over at his glacially slow handwriting, I saw a sentence take shape.  “God loves you.”
Of course.  What else would he write except maybe, “God Bless You?”

The doctor then did the physical exam and it became very obvious very quickly that Robert has a huge vision gap on his right side (that explains so much – running into people, doors, anything on his right side!).   The field of vision on Robert’s right side is so compromised that he couldn’t see the doctor’s fingers when he held them up.  This was probably the most useful information I got out of the appointment because it’s information all of us can use in order to help Robert make safe decisions when walking around.   Heads up to those visiting: don’t stand to his right!

Tuesday, November 8, 2011

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!

Saturday, November 5, 2011

November Epilepsy Awareness: 30 facts in 30 days

November is Epilepsy Awareness Month and in the spirit of education and awareness, I am posting 30 Facts in 30 Days to Robert’s Sister Facebook page and Twitter (follow @robertsssister1).

Here’s our first week of facts:
Fact 1:  The numbers: Epilepsy is the 3rd most common neurological disorder behind Alzheimer’s Disease and Stroke.  Yes, the 3rd most common!  2 – 3 million people living in the United States and 50 million worldwide have epilepsy.  One of them is my brother.  Who do you know with Epilepsy? 

Fact 2:  Seizures can be as simple as what looks like a brief lapse in attention to muscle spasms or convulsions.  
With Robert’s permission, I filmed him having a seizure which you can watch here. Robert doesn’t have convulsions but he gets a little protective of his dinner when he’s coming out of the seizure (and I try to make sure the plate doesn't end up on the floor!) :-)  He was praying when this seizure started.  

Fact 3:  Did you know epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined?  Yes, COMBINED! (Thanks to for that fact).  Research dollars for epilepsy pale in comparison to research money available for these other conditions. I don't want to take away money from other groups but can epilepsy get a little bit more, please?
Fact 4: Epilepsy can develop at any age and can be a result of genetics, stroke, head injury and many other factors. Need more info about epilepsy? Visit

Fact 5: A new biography suggests Vincent Van Gogh had Temporal Lobe Epilepsy. Others with epilepsy include actors Bud Abbott (of Abbott & Costello – look it up kids!), Danny Glover (from 15 – 35), Margaux Hemingway (granddaughter of Ernest); a Pope (Pius IX); royalty (Prince John); a former congressman (Tony Coelho) and musicians (Adam Horovitz of the Beastie Boys and Prince). Harriet Tubman, Socrates and Julius Caesar are thought to have had it as well. Robert (and everyone else with epilepsy) is in good company!
What do you know about epilepsy?  Please share your facts in the comment section so we can spread the word about epilepsy together – more awareness may create more funding for research! 

Wednesday, November 2, 2011

November: Epilepsy Awareness Month

November is Epilepsy Awareness Month (it's hard to believe it's already November!).  To promote awareness I am posting "30 Facts in 30 Days" on my Robert's Sister Facebook page and Twitter.  Please like the page so you don't miss out ().  If you use Twitter, please follow me at @robertssister1.

The following is a reprint of a post I wrote in July and explains what exactly epilepsy is, how you get it and a little bit about seizures themselves.

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.

What do seizures look like?

Seizures can be as simple as what looks like a brief lapse in attention to muscle spasms or convulsions.  Robert’s seizures have changed over the years.  When he was a child, he started by having Petit Mal seizures (also called Absence Seizures which are the lapses in attention) but then developed Grand Mal seizures (also known as a Generalized Tonic-Clonic Seizure) and involve muscle convulsions and unconsciousness (which usually means falling down if the person is standing).  It can also make the person lose control of their bladder during the seizure which happened to Robert several times when he was growing up and in school.  Both of these types of seizures involve the entire brain. 

Robert now also has Complex Partial Seizures which involve only a portion of the brain and presents itself with fidgeting, lip-smacking, head nodding and other repetitive movements (Robert moves his right hand a lot or tugs on his clothes).  He doesn’t have the convulsions any longer but he often times will fall down.  He wears a helmet to protect his head when he falls and I tend to walk slightly behind him when we’re together so I can catch him when he’s going down.

There are six different types of the Generalized seizures and three types of the Partial seizures, all with slightly different characteristics of the seizures.  A person can be groggy after a seizure or they can completely aware once it is over.  Robert tends to be back to himself as soon as the seizure passes although he does not remember having them and can only be convinced he had one if he is lying on the ground when the seizure is over.  If Robert tells me he didn’t have a seizure (even though I may have just witnessed it), I (usually) won’t argue with him (sometimes I can’t help myself!).  There’s really no point in upsetting him since it’s important to him to believe he doesn’t have very many seizures.  I record what I witness and the neurologist gets as much information as we can give her.

There’s a lot to learn about epilepsy (I’m still learning myself) so come back for future posts on treatment, what to do when a person has a seizure, living with epilepsy as well as some of the social and economic aspects of epilepsy.

Do you know someone with epilepsy?  Have you ever witnessed a person having a seizure?  I’d love to hear your personal experiences with epilepsy.