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Taking my case to an entire Mayo Team update & Why I share many have asked....

***Disclaimer been sick, along with enhanced seizures, causing more Fiber pain and rehabbing WADA procedure in pain, so that is why it was a week before this latest post. So hopefully all makes sense below***

Before I get to Mayo updates

I missed a very special Birthday posting for my mom on January12th. So give her a shout out in the comments. she has always gone above and beyond for her family as a mom and a grandma. Also, an update on my grandma who broke her hip the day after her Bday in December (go back and you can read about that) She of course is exactly like my mom and pushing to the limits while her and my PapPap are in a different nursing home right now while she has PT, and my PapPap continues his Alhiezimers tests.

So, those of you that say I am stubborn when it comes to pushing the limits you can blame those two:) They also taught me to love unconditionally. What all 3 of us have learned we need to take care of ourselves sometimes first, so we can take better care of our loved ones. I am still personally working on this.

My mom supporting both her grandsons,

Bryce at college for his birthday since we couldn't be there this past September.

Broc at State baseball and then baseball banquet 2022.

Here is my grandma going through cancer while also PT for her new hip. Showing her love to PapPap, to remind him of who he is. As I said love unconditionally, no matter the life God has sent you.


So WHY I share my epilepsy story?

I get this question a lot. Some of the reason is due to my mom and grandma, they have made me who I am today. (That's why I shared them above) Yes, Dad and PapPap, you get credit too:)

Some call me stubborn, I call it being fierce and strong to my family and friends. To those that love me no matter the situation I have been given, is why I share my story. If they can still love me on my worst of days, then I need to push as much as I can on those days. When living with a chronic illness, you quickly learn who cares for you.

Yes, are there days I wish I didn't live this daily life and wish my family didn't have to live it too, but truly it brought us closer together. I also believe it has taught our boys so much that is not taught, in quote "a normal" life.

By also sharing my story I have met people via this blog or my MyGlitch FB page, who ask questions. These people, I would have never have met otherwise. It brought me a new support group/friends. Whether they have their own epilepsy fight, a family member and or just ask questions. To me this is the BEST that has happened, it gives me a chance to educate as well as advocate for those living with epilepsy as fellow warriors or helping family members. Sometimes, just being a listening ear for them as they might be struggling.

For me it gives my own mental health a better feeling. Since I had to go on medical disibility in February 2019, I felt I had lost purpose and I don't want fellow epilepsy warriors to go through that same feeling. No matter what life throws at you! There are those there you can trust and love you back no matter your circumstances. Plus don't be afraid to share your story as well, it can create your own community like it has here and continue to advocate. So many individuals know nothing about epilepsy, yet 1 in 26 in the U.S. alone have some type. (as much as 65 plus kinds of seizures)

So KEEP convo going and DM me anytime. I love to hear from anyone. Whether here, FB or Twitter.

OK,Mayo Update

I know some of you were probably saying to yourselves, get to Mayo updates already LOL, or you might have skipped right down to here. That's ok, I only ask that when you have time and you are just starting to read this blog or my FB MyGlitch, go back and start from the beginning to have a better understanding for all that live with Epilepsy.

Let's just say Friday 13th was exactly Friday the 13th. I started getting sick, and received a call that my nocturnal siezures were being more active. The nurse usually calls to check up on me to see if there is anything going on with my body when these increase.This is when she also provided an update.

Brent and I were correct in what we understood from the Mayo Portal basic summaries from the WADA testing. The original surgery is not an option for me because, I have seizures from both sides of the brain. If they would remove or freeze the section of the left side of the brain which is causing the most frrequent uncontrolled seizures, I would basically have amnesia and lose my language(mute). Now if I only had seizures coming from one side, I would be a perfect candidate, as the other side of the brain takes over for the other as it has no seizure. (unilateral epilepsy/one lobe) I have bilateral/both lobes. The other finding is that the left side of my hippocampus is continuing to shrink(this is actually more of a concern), we do not know exactly what this all means in medical terms. We do know it has me more prone to have alhiezhmiers early set on.

But for Team Parmer it means we keep living life as is and battle daily. "We may not have it all together, but together we have it all". Afterall Brent and I have 2 very talented boys who are very successful at their chosen fields in college who depend on us. (afterall isn't that what my fellow stubborn mom/grandma taught me:))

My Nuerologist said he was taking my case to a convention to share with a group of nuerosurgeons, epitologist, psychologists and fellow neurologists. There are many various studies currently going on within the US and other countries; which still provides hope. We hope to hear something within 2 weeks. For this I am very greatful that I have a doctor who cares so much for my family. He is not giving up hope either to eventually get me seizure controlled.

For me I would love just to get off some meds and crank up my RNS, at this point I don't care if I feel it go off every time. The side efects are getting to the point, I can't stand them!

Lastly; I ask for uplifting silent prayers and good vibes for those that I have spoken to and them about their diagnosis and or undiagnosis. I will not provide names.

I have fellow friends, colleagues and some people that I spoke of that have reached out dealing with the unknown when it comes to their own seizures or family members uncertainty. These times are very scary! Plus I have been in thier shoes when doctors don't listen, and you get tossed around like a rag doll because no one wants to either deal with your 1 in a million case(as Brent calls me), or unless a perfect seizure shows up right at the perfect moment, they don't believe you. This is how we ended up at the Mayo Clinic. We went through the same pain, many are currently going through.


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diana
Jan 16, 2023

Really grateful you have access to top-notch care and a doctor who listens. That is such a gift! I love reading how you are connecting to others and lifting each other up through your shared experience. We love you💜

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Marissa DeVaul Parmer
Marissa DeVaul Parmer
Jan 17, 2023
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I am truly blessed with Dr. Feyissa. He has become like family over these years. I love making connections & feel I am helping them go through the same difficult journey. Love you all too! 💜⚡️

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