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!).

Disabled or Not: Disneyland is the Happiest Place on Earth!

I am going to admit something right off:  I love Disneyland!  It’s not that I am a huge cartoon fan but I do love smiles and laughter and all things happy.  Oh my gosh!  And I love the parades and life-size characters and the music and going on It’s a Small World several dozen times –

Good grief!  Please stop me!  You can only imagine how annoying I am at Disneyland.  It’s so bad my husband, Richard, threatens to wear ear plugs while in It’s a Small World!


At the Happiest Place on Earth

Maybe I love it because I grew up in Nebraska and didn’t to Disneyland until I was in my twenties.

Maybe I’m enthralled with the persistence of Walt Disney and his brother, Roy, following a dream. 

Or maybe I’m just a sucker for a fantastic marketing campaign.

Whatever the case, I do love Disneyland.  I even went there two years ago with the kids (okay, I know they’re grown!) and my husband to celebrate my 50^th birthday.  (Oops, did I just give away my age?). 

I was fortunate enough to go again earlier this month.  The stars were aligned perfectly.  I had a legal administrator conference in Anaheim and, coincidentally, my mother-in-law turned 70 in May and was determined to visit Disneyland during Halloween as a present to herself.  Richard and his brothers decided to surprise her with an all-expense paid trip to the Happiest Place on Earth! 

An added bonus was the conference was held at the DISNEYLAND HOTEL (!) with room rates drastically reduced.  Richard and his mom, Carol, and I shared a room with a view of the “Neverland” swimming pool and Disneyland mere minutes away. 

Well, mere minutes for someone without mobility issues.  Richard and Carol both have mobility issues (Richard because of his chronic back pain and Carol due to her heart and knee issues) so our visit through Downtown Disney was more leisurely than most. 

We anticipated needing to rent a wheelchair but Richard also brought the transport chair with him just in case.  We had carefully planned our visit with mobility issues a huge consideration.  However, Carol refused to be pushed around in the transport chair or a wheelchair and instead insisted on renting a motor scooter.  I offered to push Richard in the transport chair but he preferred to walk and take breaks when his pain got too much. 

So much for planning!

Disneyland itself is well prepared to handle anyone with a disability.  It’s a Small World even has boats designed to let a motor scooter ride directly onto it so the person never has to leave their scooter yet can enjoy the attraction. 

Most rides and attractions have disabled access lines which means a shorter wait time which is a huge help to those who can’t stand for long periods of time.  The Disneyland website has a whole section dedicated to describing the services available to those with hearing, mobility or visual disabilities.  There is even information about service animals which are welcomed at Disneyland as well as a warning about lighting sensitivity in case of a seizure disorder. 

Yes!  Disneyland is sensitive to those with epilepsy!  (I'm not sure I could take Robert, though, since we'd have to fly and don't think he'd do well on a plane).

We were all excited to be in Disneyland and Carol was happy to have some independence on her scooter so she wasn’t a burden to anyone which was her fear.

The park does get crowded though (as you might imagine) and we quickly found out it is a little difficult to navigate a motor scooter through all the people.  It doesn’t help to have a first time driver (yes, Carol, I’m talking about you) who is so eager to take in all the sights that she becomes easily distracted by the constant stimuli surrounding her while still driving. 

We did our best to give Carol a wide berth all the while discreetly directing traffic in front of her, behind her and on all sides of her. 

When that wasn’t enough, we resorted to screaming “LOOK OUT” to anyone within earshot (or in danger of having their foot run over).    

Even with this extra bit of adventure, I would love to go to Disneyland again with her and I’m sure we’ll rent the scooter again.  After all, she needs to be able to see everything she can while not feeling like she’s slowing the rest of us down.  At Disneyland, they make that possible.

Next time we’re there, though, be sure to look out for a smiling lady wearing flashing mouse ears.  She’s at the Happiest Place on Earth and isn’t about to let a few people/strollers/toddlers/curbs wipe the smile off of her face. 

Don’t say I didn’t warn you!

 

Two Appointments, Lots of Rain and a Few Surprises

Robert had two doctor appointments on Monday.  I schedule his GP appointments for Monday mornings so Robert can visit on Sunday and have an overnight visit.  I’m carefully counting the overnights since we are only allotted 73 for the entire year.  (I did find out that we can pay $182 per night if we go over the limit).  It’s great to have a back-up plan but sheesh – for that amount Robert should be staying in a fancy hotel not sleeping on a sofa bed in the middle of my family room! 

His second appointment was with the Memory Specialist and was set for Monday afternoon.  Even though I had to take a full day off work in order to accommodate the appointments it worked out perfectly. 

Except for the rain. 

I forget that Robert does not like to get wet (he won’t argue about his showers but he does want to dry off pretty quickly). 

We set out for the first appointment only to have Robert stop in his tracks once we went out the front door because it was raining. 

“Can you open the umbrella, please?”

I’m carrying Robert’s “just in case of an accident” bag, my purse, my bag with information for the doctor and trying to steer Robert toward the car.  I thought we could make a run for it.

“Robert, the car is just around the corner of the house.  Get moving.”

He won’t budge.  I expect to hear him start screeching, “I’m melting, I’m melting!” any minute now.

Instead he says, “My walker is getting wet.” 

Okay, okay.  The umbrella is now open.  I’m holding it over you and your walker (oh, never mind me over here getting soaked – thank goodness I have a hood!).

We get to the car and he makes his slow climb into it while I’m still juggling the (open) umbrella, bags, purse and now the walker which he has let go of. 

He gets in the car but I can tell he’s worried about his wet walker.  I assure him I brought a towel so he can dry it off once we get to the doctor’s office.  This seems to satisfy him.

We’re off to see Robert’s new GP since he no longer sees the New Home doctor.  Remember the guy who didn’t even realize Robert had been in the hospital, didn’t notice his pneumonia nor had any idea Robert had seizures even though he had been “treating” him for a year and a half?

Yeah, Robert has a new doctor now.  But I’m not bitter.

Robert has his own doctor now and sees her every 60 days since that is the rule of New Home (presumably following a rule set by the state).  The Most Awesome House Manager attends these appointments and is tasked with bringing the doctor’s orders prepared by the New Home nurse so Robert’s doctor can sign off on his medication refills. 

Robert has seen this GP three times now and she is really terrific.  She is friendly and personable.  She reads the chart (what a concept).  She listens to what I have to say.  She thinks it is unnecessary to see him so frequently but does anyway. 

The House Manager came to the appointment frustrated and without doctor’s orders.  Apparently, New Home nurse did not prepare the doctor’s orders this time.  Or last time.  Oh, and not the time before that.  (That’s three for three if you’re keeping score).

This is more frustrating for the House Manager than it is for me (although it’s going to get pretty frustrating very quickly if Robert runs out of his medications).   I’ve been trading calls with the area director to see how we can resolve this issue.  Unfortunately, this type of disorganization (or just plain incompetence) just creates more work for the House Manager and, frankly, is quite embarrassing in front of the doctor.

Doctor’s orders or not, by 10:00 a.m., the doctor had given Robert a clean bill of health and we had his next appointment scheduled within the 60 day timeframe.   The doctor’s office is mere minutes from my house so we made a quick stop so I could get a coffee and Robert could get a shake and we were home. 

The plan was to have an early lunch and then get to his next appointment in plenty of time (allowing for last minute bathroom breaks or paralysis in the rain).  Since I never know how long those appointments will last, I planned on having Robert over for dinner after the appointment and then taking him home. 

At the appointment, Robert did the usual battery of cognitive and physical tests.  There is always more than one doctor at these appointments (after all, it is a teaching hospital) and they confirmed he was not walking as well as he was last year.  There was a debate whether the loss of his right field of vision was encroaching on the center field of vision.  They obviously had a difference of opinion on the matter and stepped out of the room to discuss this.  When they returned, the vision tests were redone and the senior doctor’s opinion that the loss did not include the center field won out.

The right field of vision is still worse than it was last year which would have been good to know earlier in the day when I held up a banana in one hand and an apple in the other and asked Robert which he wanted to eat with his lunch.

He couldn’t even see the apple so he thought I was only holding a banana (and probably thought I was crazy for giving him a choice of a banana or . . . nothing).  Once I realized he couldn’t see the apple, I moved it so he could see it and he chose both. 

Robert does like to eat.

The appointment continued with Robert asked to write a sentence.  Usually, he writes “God loves you” but this time he added “if you are a Christian.”  I actually think he made the sentence longer because the doctor asked him to include a noun and a verb and a subject and Robert looked at him like he was speaking a foreign language.  (Note to doctor: Let’s pass on the diagram a sentence test next time).

Robert knew he was supposed to write a sentence and knew he was supposed to do something “extra” but didn’t know what.  He just decided to make it longer to appease the doctor. 

Once we were done, we walked out to the car and the rain had stopped.  Robert was convinced it was a blessing from God.  I tried to prepare him that it was still going to rain later but he wasn’t having any of it.  God stopped the rain and he wasn’t going to let me ruin the moment. 

In other words, I couldn’t rain on his parade.  Bah da bum. (I can’t resist a good pun).

I picked up a cheeseburger and fries for his dinner since by this time I was too tired to cook.  Robert got in the house and started watching the weather report while eating dinner.  After a few minutes, I realized the weather report was actually a special program because there were possible tornado sightings in the county where New Home is located. 

Great.  I get to drive 45 minutes into a rainstorm which may or may not include funnel clouds. (Apparently, I should stop questioning blessings when Robert declares one.)

After a few texts with the Most Awesome House Manager, I decided to keep Robert overnight again (shh! It’s a secret!) and take him back to New Home in time for his morning medications.  He was thrilled to stay another night and I was thrilled I didn’t have to drive into a storm (even though it meant waking up at 4:00 a.m.). 

Two appointments, lots of rain and a few surprises.  Not a bad day at all!   

Affected by Epilepsy? Tell Me Your Story.

Everyone has a story and in honor of November Epilepsy Awareness Month, I want to help you tell it.

(November is also National Family Caregivers Month and Caregiving.com has some exciting events planned). 

What Robert’s Sister will be doing in November is posting interviews of people who have Epilepsy or who have been affected by Epilepsy in some way. 

(In case you’re wondering, October around here is “Getting Ready for November Epilepsy Awareness Month.”  Oh and “Decorate Your House For Halloween Month.”)


Halloween at Robert's Sister's House

The stories people have to tell about Epilepsy include being terrified when a sibling has a seizure (as one woman recently shared with me) or trying to find that one combination of medications or surgeries or medical devices to stop seizures or how to cope when the seizures are not controlled. 

These stories are critical in raising awareness.

Robert has told me more than once that his purpose is to help educate people about Epilepsy and I believe it’s my mission to help him. 

November is going to be about raising awareness of the third most common neurological disorder. 

November is going to be about sharing the stories of some of the close to three million people in the United States and 50 million worldwide living with Epilepsy. 

November is going to be about sharing the stories of those who care for those with Epilepsy.

If you have Epilepsy or have been affected by Epilepsy in some way, I want to tell your story.

If you work with people who have Epilepsy, I’d love to hear your story too.  Are you an advocate for those living with Epilepsy?  Your story is very important too.

If you have a website of your own, you can include that in your bio.  If you have a favorite organization you’d like to tell us about, you can do that in the interview too.  If you want to post a picture of you and your loved one with Epilepsy, that can be arranged.  Robert’s Sister is pretty flexible!

Please email me at robertssister@att.net and I will send you a few questions about your experience.   

I want to know your story. 

Grief Wrapped in Five Pounds of Adorable Fluff

This was a rough week.

When we returned from vacation, Other Brother returned our Toy Pomeranian, Sassy, to our care.  For 13 years, we have shared custody of Sassy who had been our mom’s love of her life.  During their short time together, Sassy was a permanent fixture in the crook of Mom’s arm loving her and spoiling her unabashedly.


Miracle Dog (Photo Credit - Matt Stevens)

Mom died when Sassy was just three years old and the connection they had was felt the night Mom left us.  I even wrote about it in Forever a Caregiver:  

“I crawl back into bed, lie on my side and curl my knees up to my chin. I pull the blanket around me, closing my eyes to sleep again.

“In what seems like just a minute, I wake up to the neighbor’s dog barking and Sassy’s collar jiggling. I glance at the clock and it’s been an hour since I talked with Mom. I sit up to look at her and notice she is not breathing. I wait for a minute to be sure, listening in the quiet stillness of the house, not wanting this moment to be here yet. Hoping I am dreaming or not listening carefully enough. I wake up Rich so he can help me decide if Mom is breathing or not."

I believe Sassy knew when Mom was leaving us.

One of Mom’s final wishes was for Sassy to live with Other Brother.  Her thinking was that we had too many animals at our house already and her Sassy wouldn’t be given the level of attention to which she had become accustomed. 

That, and apparently, we didn’t pick up the other dog’s “business” in our backyard often enough.  Sassy needed full-time attention and a pristine backyard, according to Mom.

My Sister-in-Law was none too pleased about this deathbed wish.  She tells me if she had one or two more days with Mom, she would have been able to change her mind. 

It was not to be so Sassy lived for many years with Other Brother and his two kids while Sister-in-Law and the little “Princess” (as we eventually dubbed her) tolerated each other.  Our home became the Summer Home for Princess Sassy when Other Brother and Family vacationed. 

There was no shortage of love and attention given to this five pound of gorgeous fluff from either household.

Eventually, Sassy came to live with us full-time.  It happened gradually and Other Brother and I were convinced Mom would be fine with the arrangement (last wishes, notwithstanding).  Sassy was the boss of our house and let our Black Lab know that when he joined our household.  (Watching an 80 pound dog quiver and sit with his back turned to the little Pom he just met staring him down, was quite the site.)

Sassy turned sixteen this summer and was starting to show her age.  She had lost her hearing, had eye problems and, at the beginning of summer, was diagnosed with a collapsed trachea.

Sassy was no stranger to miracles, though, and we hoped we could keep her for a few more years.  Just four years earlier she had a terrible stroke and the vet was convinced she wouldn’t pull through.  In fact, we arrived at the clinic thinking we would have to put her down to keep her from suffering and she popped out of the oxygen cage as if nothing had happened. 

She was our miracle dog.

When we were on our recent vacation, Sassy stayed with Other Brother and his family.  They were happy to spend time with her again (yes, even SIL).  When we returned, Other Brother said Sassy had developed a cough with in the last few days.  We took her to the vet who gave her medication which seemed to help.  Within a week, however, she started to go downhill – fast.  She stopped eating and drinking and looked awful. 

We took her to our regular vet who diagnosed pneumonia and kidney failure.  If we were going to consider extreme measures, she would need a 24 hour ICU.  We whisked her to the clinic which gave her the miracle four years earlier and hoped for yet another miracle.  I didn’t want to be greedy and take too many miracles but this dog meant so much to all of us. 

Please, please, please give Sassy another miracle.

While we were pleading for a miracle, I know Mom was making a plea of her own:

“GIVE ME MY DAMN DOG ALREADY!”

Holding Sassy while she labored to breathe, even while on oxygen, was heartbreaking.  Instead of pleading for a miracle of more years, I wanted days.  My daughter, who was still on vacation and in the middle of the Atlantic, wouldn’t be home for four days.  My daughter, who I dubbed Dr. Doolittle when she was three years old because of her ability to connect with animals, loved Sassy so much and I knew how heartbroken she would be. 

Could Sassy hang on for a few more days?  Not without suffering which none of us wanted.  We made the gut-wrenching decision to let Sassy go and to end her suffering.  Other Brother assured me it was the right decision. 

My husband and I held Sassy in her final moments and, while we both were crying, I became wracked with sobs.  They surprised me with their intensity yet I had no intention of stopping them.

The sobs continued and I recognized them as the grief for losing a dog I loved with all my heart. 

I recognized the sobs as the grief for losing a connection to Mom which I had held on to for 13 years.

I recognized the sobs as the grief I felt for not being able to save my Dad from his own kidney failure. 

The sobs were heavy and loud and I made no attempt to quiet them.  This grief needed to be heard and I wasn’t standing in its way. 

I let the sobs come because they were doing me no good bottled up inside. 

The sobs rode their course yet my grief is still with me.

When my daughter arrived home, I dreaded telling her the news but I did get through it.  It was her turn to let grief envelop her. 

We’ve shared more tears and hugs and memories and will continue to do so as the days and months – even years – go by.   

For now, I’m comforted knowing Mom is happily reunited with her beautiful, spoiled princess. 

I also realized Sassy did have one more miracle in her and that was to allow me my grief.  For that, I will always be grateful to the adorable five pounds of fluff.