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WHY MyGlitch? WHY I started down this journey?

How logo & title came about go my FB page & Blog page

I get asked often by many why I just don't say "Marissa's Epilepsy story" or the "Parmer family seizure journey". Well, i didn't want it to just be like everyone else, because my Epilepsy was not like everyone else. To be honest our first thought was "Seas the Day" a spin off of "Seize the Day" because I love the beach and the waves calm me, but ironically the name was already taken. (by the way Brent and Bryce made a great chair for me, just to match "seas the Day with waves on it)

So we reached out to a good friend who is an amazing creative designer. (Check him out on IG at RDQLUS// Steve G or on FB RDQLUS CREATIVE). I explained to him my story (which he knew most of but he wanted it in my words, not the scientific lingo). I said everyone's Epilespy is VERY different and how each brain wave fires off and can cause over 60 different types. I went on in a little more detail about my various types of my own experiences and our family and what happens before, during and after. I also said purple is known to say the color purple symbolizes Epilepsy at all events.

Well 1 day later he calls me back and said i was thinking of using a lightining bolt in the logo to symbolize the firing off of brain waves and how the electrical impulses are at the core of the brain function, The word GLITCH because it is like something is glitching in your brain caused by this lightning bolt and since it is personal to you the name MyGlitch came to me. The letters of Glitch you will see are haphazard manner and various sizes, yet perfectly spaced, aligned and blanced, representing that works crazy from the outside, is actually an organized effort for you and your family. Also, the H has an exclamation point in it to provide for the vibe and tone. Steve said so if you like my thought process and on the right path, check your email i have a design for you. He said don't worry I still used the color purple in there, for Epilepsy Awareness, but different shades symbolizing everyone is effected differently. So thank you RDQLUS who nailed a name I would have never thought of. I love how he made the glitch part stand out with a yellow lightning bolt and the different shades of purple are to symbolize different types of Epilesy, place the word MY in front for me. Hence #MyGlitch came about.

How this journey has gone

FB PAGE DEVELOPED

My main key focus first was just getting the word out there I had a page, and telling our family's story, daily feelings or happenings, showing Mayo appointments and video if captured of a #MyGlitch happening, but also the exciting times with my family on their accomplishments(because a mom/wife likes to brag on her family), and hoping in my mind I could go that special day without #MyGlitch. I also shared simple facts about #Epilepsy, because in other states we had lived I was always involved with the Epilepsy Foundation there with events etc. and unfortunately there was not one here.

CONNECTIONS

I slowly gained more likes on the page and was amazed about the DM's I would receive from friends, and strangers that wanted to ask questions or just talk about a family member, friends or themselves and having #Epilepsy or they were questioning doctors about having some of my same described experiences but were getting no answers. It was great for my own personal mental health to speak to others that were going through similar days/nights, and not feel so alone at home.

PURPOSE

I couldn't believe it I was feeling a new sense of advocating for myself and the millions of others just by creating this FB page #MyGlitch Just like how I felt before where I could actively go to events or meetings etc. I was also feeling more confident and not ashamed and scared of having a #MyGlitch in a new town where people did not know our family's situation where I would feel bad for embarrassing my family. (Even though in hind site, it was more me feeling they felt that way and to them it was a way of our lives.)

BLOG SITE NEXT STEP

As the FB grew my husband suggested me developing a blog, and to be honest I was reluctant because I am not a writer and was afraid due to #MyGlitch sometimes my words or sentences get mixed up and as some of you have seen, I have had #MyGlitches while writing some of these blogs. Well he was about to backdown and designed one for me, and said I want to show this and see what you think. He said you are great at talking with people and everyone always reaches out to you for advice on having a family member newly diagnosed or themselves (Even if you don't take your own advice) He said think of the outreach you can do here. He also created #MyGlitch gear so if people wanted to purchase any, it would be spreading the site name but more importantly getting people asking what is #MyGlitch, and then they direct them to you blog and you gain more connection along with educating others which you love to do. OK, OK, so this is where I hate to admit but he was right...and on September 29, 2021 the #MyGlitch blog began. Since then, I receive many texts from friends, old colleagues etc., that direct people to my FB page and or now blog. Plus they ask me if it is ok to provide my phone number, so a newly diagnosed person can chat with me.....this is where I feel #MyGlitch has reached it's purpose.

THANK YOU TO MY CURRENT FOLLOWERS/SUPPORTERS ON

FB #MYGLITCH &

NOW KEEP SPREADING THE WORD OF THE BLOG SITE TOO!


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