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!

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.