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!

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 www.cureepilepsy.org 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 www.epilepsyfoundation.org.

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! 

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 (http://www.facebook.com/#!/robertssister).  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.

Book of the Month

Wow! I am honored, thrilled and grateful to have Forever a Caregiver chosen as the October Book of the Month Club pick on Caregiving.com.

Denise Brown, founder of Caregiving.com, will talk with me about the book tomorrow (Tuesday, October 25) at 12:00 p.m. PDT. You can listen here.

Forever a Caregiver is a book that took me ten years to write but was actually a lifetime in the making. (Still – 10 years? Sheesh!). Denise was one of the many people who encouraged me to publish this book and who ignored my disclaimers along the way (I can be quite persistent with my disclaimers). I am very grateful to Denise, my family and friends for helping me see this book through to completion and publication instead of indulging the coward in me and letting me safely keep it to myself. My hope is that others will see their own family experiences in this book and find acceptance of their family roles and experiences.

Now that I actually know what caregiving is, I realize I was born into this caregiving role. Everyone has family roles and mine happens to be the one where I take care of people. Maybe it’s the control freak in me but I enthusiastically accept this role although, I admit, it was not always something I wanted to do. As a teenager, keeping a watchful eye on Mom so she didn’t sink further into depression (and attempt suicide again) was not something I would have volunteered to do or wish on anyone else for that matter. Yet it was one of many experiences that I accepted, managed to get through and which I actually appreciate for making me the person I am today.

“Appreciate” may seem an odd word choice but I wouldn’t want to be anyone else and those experiences helped shape who I am. For me, appreciating these family experiences (and family itself) is the perfect word.

That complete acceptance of my experiences made me a better caregiver to Mom when she was terminally ill twelve years ago and helps me be the best caregiver I can be to Robert today. Don’t misunderstand – caregiving is not easy and it certainly isn’t always (or even mostly) roses and butterflies and lollipops but taking care of family is what fulfills me and I wouldn’t have it any other way.  Call me crazy!

Please recommend this book to anyone who finds themselves in a caregiving role or who has struggled with accepting some of the mess that comes with being a part of a family.  I'd love it if you listened tomorrow too!