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.

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!

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!