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Mayo Team update, Plus you tell me 1x a month open Zoom?

I have been debating, Yeah I know..makes my brain hurt:)

As I move further into blogging I have been meeting more and more people that are living with seizures and or family members of those living with various types of Epilepsy. Many different age groups as well. I love this, because it also teaches me what their doctors are telling them and we talk about their types of seizures and I talk about my experience and also how living with Epilepsy, truly is an entire family ordeal.

I feel possibly by having a 1x a month zoom call, we can create a community of support and or those or are even not knowledgeable and just want to learn more about this 1 in 26 people with with an invisible illness.

I would even think about having guests that I am becoming more acknowledgeable about, and of course teach seizure first aid as one zoom call.

So, all of you out there, comment on this blog, DM me me here, FB or Twiiiter or IG your thoughts on this. Give a Yah or Nay on following through with this.

Mayo Team UPDATE

Well, Brent and I were right by how we felt after the WADA procedure results showed on my Mayo Portal. Laser burn off of section or removal of the left temporal lobe & hippocampus section of the brain, where most of my seizures are occuring is NOT an option. This would cause too much of a dangerous chance of amenisa, think of 50 first dates. As most right handed indibiduals, my left side of the brain is more dominant for cognitive skills. (memory and finding of language) . I have issues with that now, but too much of a chance, it would be even worse,at this point.

Listed below as simple as I can explain by the phone call I received from Dr. Feyissa, and what the entire team decided and discovered during their lengthy disussion.

Other discoveries during the MRI/EEG during the WADA procedure:

1)Something showed on the left side temporal lobe, but too hard to tell without going inside the brain, if just more scar tissue from the seizures or something more

2)Hippocampus continues to shrink, more on left side but also on right side

3) My right side seizures were almost controlled, down to only 10% not, that is now at 25% not controlled. My left side is just slightly better controlled, but still not well.

4)My current meds need to be looked at more deeply. Due to the amount I have been on and the length of time. My brain might have become immune to them and or some are interacting with each other, hence cancelling out what is supposed to stop my seizures is actually/possibly causing more. Not too mention the terrible side effects. (some is anxiety, and possibly my memory and language finding) The team was VERY shocked when they discovered how long I have been having these seizures, the amount of meds along with the RNS and not controlled. They actually were very impressed with my brain cognitive skills based on that. Dr. Feyissa explained to them, I do work on my brain games and along with this blog is helping me. Along with family/friends support.

5)Nocturnal seizures have increased, need to look at more

6)PNES Seizures looking at doing Cognitive Behaviorial Therapy, only the pyschiarst felt this would help. My personal nuerologist felt it wouldn't make a differnce, but would leave decision up to me to give it a try.

7)They all agreed that my GAD65 Autoimmune Epilepsy(I have discussed what autoimmune epilepsy is in a previous blog, take a read) is the biggest obstacle for not being controlled with an RNS implant and all the meds. We might be looking at going back to infusions. (is there an infection in my brain, due to my autoimmune) This was the biggest decision the entire Mayo team felt at this time decided surgery at this time is NOT an option.

Next Mayo appointment February 27th

The RNS Engineer was unable to be at the meeting, and DR. Feyissa wants my appointment with him and see how the next few weeks go, before anything changes. Most likely will intensify the RNS firing off, if my body can handle it, and the possibility of hospitalization with new EEG while changing meds safely. Also, looking at STEM Cell theory(newly approved) and other possible natural therapies along with infusions.

Stay Tuned.....

We obviously have LOTS of follow up questions, and possible ideas ourselves based on all of the above, too much to list now after already a long blog for all of you to read:)

Lastly; I am proud to say: mind and body connection is real!

I have continued my daily meditation, daily exercise of various types. My body is still fighting off some virus, as I can't seem to keep a normal temp without taking a med to lower it. But, I truly believe my mindset, is always better when I do exercise. Even if it is adjusted from what my Peloton instructors are giving.

Sunday workout plan: Rowing 15 minutes, strength training 20 minutes, shadow boxing 10 minutes, full body stretch 10 minutes (will meditate at bedtime)

*small clip of renagade rows today during strength*

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diana
23 janv. 2023

I say give Zoom a try and see where it takes you. Sounds like there is a need for it in this remarkable community. So impressed with your streak of workouts & meditations. Hope you are finally feeling better💜 Thanks for the detailed update, we support whatever you choose to do or not do. You are your own best advocate/expert. One thing that really helped me when the boys were young and legally blind is I would tell myself ‘this is what we know today, the future holds possibilities and healing modalities not yet known to us. This is where our hope lives.’ May the future be filled with new, healing treatments for you and may hope stay bright and…

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Marissa DeVaul Parmer
Marissa DeVaul Parmer
26 janv. 2023
En réponse à

Thank you for giving your incite based on your own experience. It truly means a lot. I actually found a person who would like to be part and be part as a speaker and help get this started locally here. Whether starting as a 1x a month zoom calls or eventually a podcast. It’s just trying to figure out best day and time of the month due to various time zones. Much love for the continued support 💜❤️

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