epilepsy

Robert's Sister
Purple Day for Epilepsy

Purple Day for Epilepsy

Wednesday, March 26 is the Global Day of Epilepsy Awareness (also known as “Purple Day” thanks to 15 year-old Cassidy Megan, founder of the Purple Day Organization). 

Purple Day 2012
Along with many other epilepsy education advocates, I will be wearing purple. A purple sweater, purple earrings, and a purple...

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Robert's Sister
Leave Room for a Little Sunshine

Leave Room for a Little Sunshine

Rock, meet Hard Place but leave some room for a little bit of sunshine.

Robert’s nighttime cough was worse by Friday even though he was on cough medicine. He was not sleeping well. The coughing and congestion was so severe he threw up a few times in the middle of the night. 

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Robert's Sister
A Gratitude Reminder to Myself

A Gratitude Reminder to Myself

Things seem a little out of control in my caregiving world right now. 
Grateful for caregiving friends

We have mood swings, difficulty walking and cranky behavior.

And that’s just before I’ve had my coffee!  (BaDaBam)

We’ve had medication changes, lots of coughing and changes in seizures.  Robert has hallucinated...

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Robert's Sister
The Not-So-Excellent Side of Robert

The Not-So-Excellent Side of Robert

Telling stories about Robert and his drive to spread awareness about epilepsy makes me happy.
A recent moment of "excellent"

Sharing Robert’s proclamation of just about everything as “excellent” makes me happy too.

Seeing Robert become angry and irritable, short-tempered and cranky with most everyone he comes in contact with...

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Robert's Sister
Changing Medication: At What Cost?

Changing Medication: At What Cost?

Every now and then Robert’s neurologist wants to try a new medication.  Robert is on a litany of drugs right now yet his seizures remain uncontrolled.  Over the past few months, Robert’s seizures have been coming in clusters and have been more frequent. 
Robert - happy and doing...

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Robert's Sister
Sometimes Seizures Scare Me

Sometimes Seizures Scare Me

I don’t like to admit seizures scare me but sometimes they do. 

You would think I would be used to Robert having seizures.  After all, he’s my youngest brother and he’s had them practically his entire life.
Robert's downstairs bathroom

Robert’s seizures have evolved over time from Absence Seizures...

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Robert's Sister
A Day with a Caregiver

A Day with a Caregiver

Richard and I recently participated in a project created by Denise Brown, founder of the non-profit CareGiving.com, Chris MacLellan, founder of ThePurpleJacket.com, and Rajiv Mehta, founder of Unfrazzle.


One of my favorite moments
It is easy enough to do: keep track of your caregiving day...

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Robert's Sister
Blessings and gratitude and a grudge fades away

Blessings and gratitude and a grudge fades away

One weekend a few months ago, Robert asked me to find his pocket phone book.  I knew we didn’t have this but I looked in his closet anyway.  I told Robert there was no pocket phone book to be found.
Robert's Bible cover

The next weekend, he asked again....

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Robert's Sister
Break Out the Tiny Violins

Break Out the Tiny Violins

I’ve been having a pity party (don’t take it personally if I didn’t invite you).  Thank goodness it’s almost over, though – I am running out of refreshments.

 

Before the Pity Party

So what’s been my problem?


It is a very busy time at work – this is the usual...

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Robert's Sister
Robert’s Christmas Tour

I am exhausted!  I wrote a to-do list at the beginning of the weekend and knew it was a long shot to be able to get half of it done.


My to-do list included “to-dos” for Robert and my husband, too! Boy, are they happy with me!


I am happy to say we all got so...

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