Tuesday, November 1, 2016

Epilepsy Awareness Month: My Life with Epilepsy (Follow up Interviews)

Today is an exciting day!

Disneyland here we come!
We are off on our trip to Epilepsy Awareness Day at Disneyland for the third year in a row! Yes, it looks like we will make it there after all! All of your positive thoughts for Robert to get over his respiratory illness have worked (that and a ten day supply of antibiotics). Now he just has to stay healthy for the next five days and we will be golden!

That isn’t the only reason to celebrate today, though.

Today is November 1 which is the beginning of Epilepsy Awareness Month!

Every year since I started this blog I do something in November to participate in Epilepsy Awareness Month. This year I will bring you interviews throughout the month with people who have epilepsy, are caring for someone with epilepsy or have a loved one with epilepsy.

I am thrilled that many of these people were interviewed in this space during our 2012 “What Does Epilepsy Mean to Me” series or the 2013 Epilepsy Awareness Month series of interviews with various epilepsy advocacy organizations.

As a caregiver for Robert I know things can change day to day (as we experienced recently with our pneumonia watch the past few weeks). I also know there can be significant changes that happen after three or four years.

In order to get the full picture of epilepsy we need to see how it impacts a person’s life over time as well as how it impacts the lives of those around them.

In our situation, Robert went from an active child to an adult who lived independently with some family help with his finances. By the time he was in his forties, his brain had suffered the effects of dozens of concussions and uncontrolled seizures and he was falling more, making poor and unsafe decisions and not recognizing a life-threatening infection.

Robert could no longer care for himself. He became increasingly incontinent (sometimes with bowel incontinence now too), has increased memory loss, decreased mobility (using a walker or wheelchair to get around) and cannot take care of his own personal care needs.

I was unhappy with the care facilities we tried for Robert so he moved in with me and my husband when he was 47 years old and, now, at 51 years old he still lives with us. It is the best possible situation for him but you don’t have to take it from me. I will have him participate in the interviews this month so you can hear it from him!

Everyone with epilepsy has a different story. Some people do not see such a dramatic change but there may be other significant changes (like a surgery or new treatment or more advocacy work).

I will bring you some of these stories this month in order to share with you the impact epilepsy has on our lives. Be sure to follow me on Facebook and Twitter so you don’t miss out on these interviews!

There’s also still time to be interviewed! If you are interested, please contact me at robertssister@att.net.

For now, we are off to the Happiest Place on Earth!

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