advocacy

Open Mic Night for Purple Day in Summerland!

We are so excited to announce our Purple Day event for 2015: An Open Mic at The Sweet Tooth Cafe in Summerland.

The fun all starts at 5pm on Thursday, March 26th (Purple Day!) and is open to all ages. It free to the public but we will be collecting donations for epilepsy awareness initiatives. There will be door prizes and lots of fun!

Spread to the word to all musicians you know and all music lovers, too! If you are a musician, we supply the microphones, amps and have the ability to play your backing track if that’s how you want to do it.

If you need more information, please contact: caitie@yepnow.org. You can also RSVP to our Facebook event: https://www.facebook.com/events/797448667008705/

Hope to see you there! :)

Robert’s Story

By Trish Hughes Kreis, Robert’s Sister

Robert is my youngest brother and has lived with uncontrolled seizures his entire life. He is physically and cognitively impaired and seems to have an additional diagnosis of a new problem every couple of months. He has gone from an energetic young boy who was able to graduate high school and even take a few college courses to living independently as a young adult to now needing full-time care.

Robert’s brain has been traumatized by two brain surgeries, numerous concussions and countless seizures. He was recently given additional diagnoses of Restrictive Lung Disease, Parkinsonism and Cumulative Traumatic Encephalomyopathy (CTEM).

After living independently and then a few attempts at living in an Assisted Living Facility and a Board and Care home, Robert now lives with me and my husband. This living situation is the best for all of us although with Robert’s declining mobility we may eventually need to place him in a facility that can provide him all the care he needs as his needs increase.

For now, my husband and I do our best to keep Robert healthy, happy and safe.

Sometimes it seems as if Robert loses just a little bit more of something all the time. Yet every time I am disheartened that he is in a wheelchair now more than he isn’t or that he is frequently in the hospital with pneumonia or getting a new diagnosis of Parkinsonism, I am reminded of his positive attitude and ability to make a joke out of everything.

Robert loves to laugh and to make others laugh with him although he hasn’t always been this way. In fact, he was a moody, withdrawn and angry teenager and young man. His uncontrolled seizures as well as the side-effects from his medications took its toll and Robert lashed out and was very unpleasant to be around.

This behaviour and attitude affected our relationship and I only talked to Robert on occasion – not nearly as much as I thought I “should.” He seemed to be stable living with a companion who also had epilepsy. Our dad lived in the same city as Robert and provided a little bit of assistance. Robert and his companion (whom he would have married if their benefits wouldn’t have been affected) spent their time taking care of each other, attending church and going to doctor appointments on their own.

Six years ago, it became apparent Robert was not making safe choices in his living situation and his memory was failing. He was forgetting to go to doctor appointments, fell prey to several financial scams, and even allowed a homeless woman to move in with him and his companion. Robert also developed a life-threatening infection during this time.

Time to step in!

Since caring for Robert, I have learned a great deal about Robert, my husband and myself. With regards to Robert, his faith never waivers and he never ceases to inspire me with his nightly prayer for his seizures to stop. Robert’s sense of humour keeps people smiling as he likes to joke about drinking whiskey or traveling to New York City (we live in California and, of course, he doesn’t drink).

My husband and I work well as a team and he continues to amaze me with his willingness to continue to help while dealing with his own chronic pain.

Robert has shared with me his belief that his purpose in life is to educate people about epilepsy. Robert had a near death experience as a teenager and has been extremely devout and devoted to spreading awareness ever since then.

I’m happy to be his “spokesperson” so we can help others in caregiving situations as well as spread awareness and education about epilepsy. I write our stories at www.RobertsSister.com and can also be found on Facebook and Twitter @RobertsSister1.

Robert, Richard and I will be doing a series of videos about epilepsy and the effect it has had on Robert’s life during Epilepsy Awareness Month in November. I hope Robert’s messages inspire others not to give up on a cure for Epilepsy!

About Trish Hughes Kreis:

Trish Hughes Kreis is a freelance writer and full-time Legal Administrator who advocates on behalf of her disabled youngest brother, Robert, in order to keep him as healthy and happy as possible.

Trish’s advocacy work includes working to expand the definition of family to include sibling care under the California Family Rights Act and Family and Medical Leave Act. Trish has also participated in a number of interviews on managing life as a working caregiver.

Trish is passionate about helping Robert fulfill his expressed life purpose of spreading awareness and education about epilepsy. However, she is on a no less important mission of keeping a steady supply of Jeopardy and Family Feud shows recorded for him as the simple things are what make Robert truly happy

Trish is the author of Forever a Caregiver and can be reached through her blog www.RobertsSister.com, Facebook at http://www.facebook.com/RobertsSister and Twitter @RobertsSister1.

When Do You Stop Counting?

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Yesterday I attended my first We Day with Caitie and Dan in Toronto. This was Caitie’s 4th We Day and Dan’s 3rd so I’d heard about how amazing this event was for years. And it absolutely was just as inspiring as everyone had told me it would be. But yesterday was amazing for another reason: yesterday marked Caitie’s 8th week of no seizures and that is a pretty big deal!

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Someone asked me when we stop counting? When does having no seizures just translate to a normal day? I don’t know. This is the longest seizure free streak Caitie’s had since she turned 10. And right now she is not taking any anti-seizure meds and she came off the Keto diet almost 2 months ago. So we are doing pretty good. No, we are doing AMAZING!

But when do we stop living with that worry that a seizure might come. As awesome as yesterday was, there were little reminders of Caitie’s epilepsy sprinkled throughout the event. I did have to tell one of the We Day producers at rehearsal that Caitie has seizures (although she is not photosensitive). I did worry when she barely slept the night before (due to excitement and a bad cold) that she would overtired on stage. Even she worried a little bit that she might have a seizure in front of 20,000 in the audience (her worst nightmare). Lightening the mood, Danny pointed out that it would be a good lesson in seizure safety if she did. And when I had to find her a seat and ask the hosts at the after party for a glass of water when we arrived because she was feeling off, we watched her closely to make sure she wasn’t going to have a seizure. After only 8 weeks, the memory of seizures is too close to ignore any of those things.

Last weekend after the kids presented at the Canadian Student Leadership Conference, Caitie burst into tears on the ride home. Worried I asked her what was wrong. She said, “I’m just so happy, Mum. Everything is so perfect right now.” Then she paused and took a deep breath before adding, “And I’m scared it will go back to how it was last year.”

And last year was bad. It truly amazes me what Caitie and Dan have done in the last 15 months given the rollercoaster ride we’ve been on with Caitie’s health. In the last year and a half she’s had 65 seizures (that we know of). And Caitie would say that’s not so much compared to some people. But trust me, it’s enough. I think their work with the Epilepsy Awareness Squad has really made all the ups and downs of this disorder a lot easier to handle. Taking the focus off oneself and shining it outward can make even the most miserable moments a bit brighter.

I hope that one day we will get to the place where we don’t need to count the number of days Caitie has been seizure free. But right now, I’m grateful for every one of those days that we do have. And for the positive attitude that makes the EA Squad so empowering!

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Exciting News!

We are excited to announce that one of our co-founders, Caitie Shaw, has won the 2014 Canadian Living Me to We Youth in Action Award for her work with the Epilepsy Awareness Squad and SandpaperSmiles!

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Caitie and Dan will be travelling to We Day Toronto on October 2nd! They are also honoured guests at this year’s We Day Vancouver on October 22nd! Watch the blog for updates from their trips.

Thanks to everyone who voted for Caitie and special thanks to Canadian Living and Me to We for these awards. You can read all about Caitie’s award (and the winners in the other categories) in the October issue of Canadian Living.

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