epilepsy

Robert's Sister
Three Years

Three Years

Three years ago Robert moved in with me and Richard.  Three years!! It really doesn’t seem possible it has been that long.

I took over Robert’s care at the end of 2008. Since that time he has lived in a Skilled Nursing Facility, an Assisted Living Residential Facility and a...

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Robert's Sister
Piecing Together Respite

Piecing Together Respite

I followed my own advice: be flexible with respite. I explained months ago to Robert’s case worker that we would love to take advantage of respite. Robert is a client of the local regional center and one of the benefits is 14 days per year of respite care. Richard and I don’t need 14...

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Robert's Sister
Love Is All Around Us

Love Is All Around Us

It is Valentine’s Day so why not talk about love? There are many examples of love that I have been privileged to witness and not just the lovey-dovey kind found in commercials for Valentine’s Day chocolates or Viagra.


Love is going through life knowing you have someone on your side....

Robert's Sister
Help and Hope

Help and Hope

I just love leaving the neurologist’s office with such hope.  Robert’s seizures have remained largely uncontrolled his entire life; his seizures changing over the years but never going away after numerous medications changes, surgeries and the use of various medical devices.
Between seizures - declaring himself excellent

Robert now...

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Robert's Sister
Caregiving Blog Party 2015

Caregiving Blog Party 2015

It is that time of year! Grab a cup of hot cocoa, a bag of tiny marshmallows (oh yes, I said a bag) and a few candy canes.  We are going to have fun this week!


Every year, Denise Brown hosts a Blog Party through her site for...

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Robert's Sister
Epilepsy Awareness Month: CTE and Epilepsy – Making the Connection

Epilepsy Awareness Month:  CTE and Epilepsy – Making the Connection

The connection between blows to the head (even those not resulting in a concussion) and Chronic Traumatic Encephalopathy (CTE) is clear thanks to the persistence, innovation and research of Dr. Bennet Omalu, a forensic pathologist and the doctor who wrote the book, “Play Hard, Die Young: Football Dementia, Depression and Death.”

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Robert's Sister
Epilepsy Awareness Month: 30 Facts about Epilepsy

Epilepsy Awareness Month:  30 Facts about Epilepsy

A reader of the Robert’s Sister Facebook pagerecently asked if she could share the epilepsy series I did a few years ago (30 Facts in 30 Days). (Of course I said yes!)

Bonus fact: First Aid for Seizures
(courtesy of the Epilepsy Foundation
of Greater Los Angeles)
A friend of...

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Robert's Sister
Epilepsy Awareness Month 2015: A Sea of Advocacy

Epilepsy Awareness Month 2015: A Sea of Advocacy

Our recent trip to the Epilepsy Awareness Day at Disneylandbrought us face to face with many wonderful and inspiring advocates – all full of life, laughter, education and a passion for managing and curing epilepsy!

Epilepsy Awareness Day at Disneyland not only is a way for families affected by...

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Robert's Sister
Epilepsy Awareness Month 2015: Caregiving. Family. Advocacy.

Epilepsy Awareness Month 2015: Caregiving. Family. Advocacy.

It is hard to believe it has been seven years since I first started caring for Robert.  In the fall of 2008, Robert had recurring infections and allowed a stranger to live in his house (a homeless woman he and his companion, Judy, met while picking up their prescriptions).  By Thanksgiving, this woman had...

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Robert's Sister
Preparation for Respite Weekend

Preparation for Respite Weekend

Respite Weekend was a definite success but getting here was no easy feat!

Even though we are officially “entitled” to twelve respite nights per year from Robert’s social services agency, we have not even come close to taking advantage of that.  

Dropping Robert at respite. 
It isn’t even...

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