Saturday, November 1, 2014

Kick Off to Epilepsy Awareness Month 2014!

As promised in October, Epilepsy Awareness Month is going to be full of education, awareness and ROBERT! 

Robert is getting pampered on the first day
of Epilepsy Awareness Month 2014
This has been a year in which I was pretty much hit over the head with the damage uncontrolled epilepsy can really do.  I knew about SUDEP and horrific epilepsy disorders that can cause infants to have hundreds of seizures a day but the damage to an adult with uncontrolled epilepsy? 

What happens to adults with uncontrolled epilepsy who do not succumb to SUDEP or fatal accidents?  What is the toll on these adults?  There is not a lot of information out there. 

For Robert (and I can only speak about Robert’s experience with uncontrolled seizures), this has meant a cognitive decline, a physical decline in mobility as well as generalized weakness and new diagnoses Cumulative Traumatic Encephameylopathy and Parkinsonism.

The revised mission of Robert’s Sister is to educate and advocate for those with uncontrolled epilepsy in order to generate solutions and resources for both the person with epilepsy and their caregiver, particularly the working caregiver.

The goal is to post a new video every day throughout November but as all caregivers know, sometimes caregiving gets in the way of the best of plans! (That’s my disclaimer if I miss a day or two).  J

To follow Robert’s Sister, please sign up to follow this space by email or follow us on Facebook, Twitter, Instagram, Pinterest or You Tube.   

This month, our theme is The Impact of Epilepsy on Robert. I recognize the value of your time (and truly appreciate you taking time to read this blog and view the videos) so am keeping these videos fairly short without compromising the message Robert would like to convey.

Oh, another disclaimer! I am not a professional videographer so please forgive the camera-person (me).

Let’s kick things off with Robert talking about his seizures. 

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