top of page

2023 Will bring HOPE!

Mayo Visit December 30th

Well, the visit turned into kind of a wasted trip that truly could have been completed by local doctor.(abit frustrating to say the least) When we arrived my ECG was cancelled, and said since I had one just in 2019 it wasn't needed for my upcoming WADA procedure on January 3rd. So we drove there for blood tests/urine and a medical exam by a dotcor. Possibly an hour visit tops, oh was a bit longer as mom brought the boys Christmas gifts to us...so there was the plus for my boys...always look for the positive:)

I have been cleared for the WADA testing. This will be performed by a team of doctors via an brain angiogram. We will arrive at 6:15am, and prep to begin procedure at 8:30amEST. I will be awake, via the entire procedure as they will see an X-Ray of my brain as the dye will be placed up through my groing muscle to the brain. Then a small pain reliever, via the vein in an arm. They will be asking questions to see where most of my cognitive skills/memory etc. is stemmed from in the right or left side of the brain. I will then be lying flat for 2 hours post-procedure in recovery room, and they will provide us the results during that time. As of now it is an outpatient procedure, based on my vitals, and or if they see something during procedure. This will be decided by the medical doctor and my Neurologist.

To remind everyone if you missed previous blogs. This WADA procedure is being done based on my last visit, which we were told we have stumped all the Mayo doctors on why I am not improving seizure control and how nocturnal seizures have increased. If you also recal, that appointment, was a bit of a shocker to me and set me into more anxiety of what is ahead. My nuerologist who like I said has become like family, said in basic terms we are guessing on how to control your seizures. RNS adjustments and too many meds. I only tell you this, because I feel like you are like my family. I normally would not be that honest to patients.

This is the full description to better understand

what will be performed on January 3rd

Now after the procedure I will not be able to lift anything over a milk carton and I am supposed to walk daily

(not my speed walks) for 72 hours.

OK brain, NEED to listen to prevent ending up in the hospital.


FILE_7023
.pdf
Download PDF • 1.68MB

Tough decisions ahead!

Based on the testing result we will then have to decide if removing a part of my brain to control seizures, lower medication intake which already has too many side effects, but will also possibly take away memories which I already have difficulty with. Controlling the seizures would provide me less daily pain, missing family/daily activities due to siezures occuring....BUT is this worth the cost? Also, is there possibly other things in the studies, that I can wait on to possibly be a candidate?(currently there is not)

Our family in 2023 has much to look forward to, based on our boys accomplishments in 2022! You might have read about them already....just a few to mention.

Bryce as only a 2nd semester student at ERAU in already a Junior status!! (still speaking Aerospace Engineering languages we have a hard time understanding, but so proud!....even little brother tries to understand) He will be taking 17 credits, but I have faith because he is so driven in his goals.

Qualified for NASA contest for June traveling to Houston with his group to compete against 4 other teams from across the country with the goal to WIN and their project would be used on Artemis 3!! While there they will be working with a NASA employee directly. To think this was selected from millions of entries is just AMAZING to me! Will be a great experience, especially since one day he wants to work for NASA.

Broc, was injured during his fall season of baseball so he has made it a priorty to comeback even stronger for baseball kicking off in January!! I am amazed at his dediccation through Christmas break of his throwing, hitting and strength program to make sure he is at his VERY BEST! Not only for himself but for his teammates.

He learned how to live on his own in a house with 5 other teammates, he calls himself the House Mom LOL:) We can defintiely see a maturity growth from him, for being very young for his class, when he was already above most. He likes things to be clean now that he is on his own, and cooks too! All while geeting straight A's and placing in extra work outside of normal practices. Just as driven as big brother to reach his goals!(big brother even is trying to learn more terminology in baseball)

As a mom, I LOVE how they support eachother in

VERY different career paths.

Brent & I we made a point to have their bedrooms redecorated for them by Christmas. We call them the baseball room & space room, theme rooms for guests we teased them that they are. guests now too:) We have also began to rearrange the rest of the house, still in process. Brent continues to thrive at UWF and has been added an area to oversee.

The thing I am most proud of is the goal to be more mentally and physically healthy for ourselves and the boys. The mind & body connection is very true, and making ourselves, is great for our boys. We have a lot to live up to, based on their upcoming schedules and lofting goals!

I am proud to say I am on a 18 week streak of daily workouts of some kind. BUT... that starts over today to rack up those workouts for 2023.

Ranging from (using my Peloton ap) HIIT Cardio, dance jams, speed walks around the house(I am sure that is a sight to see), walking/run intervals (when I can have access to a treadmill when supervised for safety), various strength workouts (body weight and weights), meditation and stretching.

It took me a while to suck it up and realize I am not where I was prior to the intense seizure days, and at times I pushed through pain which I shouldn't have and just made it worse on Brent to help me through the day/night. So now now about the 16th week(just a bit stubbborn) So now realized if a rough seizure day, I do meditation, stretching and core only. NEW Mantra Anything is better vs nothing. Definetely excited for our new Peloton Rower to arrive because it is a workout machine I will be able to use while home by myself since close to ground.

It was this gift to ourselves for Christmas, I feel it is much deserved based on our goals of a healthy mind/body lifestyle. Now Brent he can spin away on his spin bike.


Listen to this video & it will explain why I believe 2023 is going to provide HOPE & how I feel daily living with Epilepsy!



78 views4 comments

Recent Posts

See All

4 Comments

Rated 0 out of 5 stars.
No ratings yet

Add a rating
the13thbluepig
Jan 01, 2023

Keep at it Marissa. Your family is proud, and you should be proud to!! You always are striving to find the answer, the missing piece, the lost key, so maybe you will find it.😀🧠

Like
Marissa DeVaul Parmer
Marissa DeVaul Parmer
Jan 06, 2023
Replying to

Thank you for your encouragement, and if this is who I believe it is you inspire me with your fight as well. 💪🏻

Like

diana
Jan 01, 2023

First of all, my nephews are incredible! Love seeing the updates on all their goals and accomplishments. So proud of them!

As always, I appreciate you sharing your journey. I pray this upcoming procedure will give you some direction on your next, best steps. Sending you lots of love❤️


Great job with your workout streak…I didn’t know Peleton had a rowing machine, that sounds perfect for you. I love my Mirror, like you I really enjoy dance workouts.


Please know we are thinking of you. We all love you very much💜

Like
Marissa DeVaul Parmer
Marissa DeVaul Parmer
Jan 06, 2023
Replying to

Thank you for all the continued support and love. Wish we had more time to get all the boys together! They all have grown up way too fast. Can’t wait to see where JR ends up in the fall & one time be a big time Coach. I feel it! Or maybe even own a team. Much love and new endeavors in 2023 for you and my brother. 💜❤️

Like
bottom of page