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Been to an Epilepsy Monitoring Unit? What’s it like?
The Patient Experience Nursing Team at Mayo Clinic would like your help in making the experience in the Epilepsy Monitoring Unit at Mayo Clinic the best it can be. If you chose to take part in the survey, thank you! The survey is now closed.
In addition to the survey information, let’s talk about your experiences in an open discussion here on Connect.
What it is like to be in the monitoring unit, to be attached to electrodes while waiting to have a seizure? If you were preparing a friend to have a stay in an Epilepsy Monitoring Unit, what advice would you give them?
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Hi @lauragal
Thank you so much for your kind words!💜
I'm glad you've found the Epilepsy & Seizures Group at Mayo Clinic Connect. Thankfully, today we have technology that lets us connect with people who truly understand us, no matter where we are in the world.
Actually, my husband and I dream about moving to a smaller, quieter city one day. With today's technology, it feels more possible than ever!
Just out of curiosity, since Covid, most of my sessions with my neuropsychologist have been virtual, and honestly, it works beautifully. It's been such a relief, especially since I can no longer drive and the traffic in my city is crazy. She has helped me enormously with accepting my epilepsy and all the life changes it brought.
Have you considered virtual support from a psychologist or neuropsychologist as an option?
Chris
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Hi @lauragal,
I haven't heard from you in a while and wanted to check in. How have you been doing?
Chris
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@thefincks
Hi Lisa's mom,
I haven't heard from you in a while and wanted to check in.
Lately, I started a discussion in our group for families walking alongside children with epilepsy — it would be lovely if you could join us there: https://connect.mayoclinic.org/discussion/families-walking-alongside-children-with-epilepsy-lets-connect/
How has your little princess been doing? Looking forward to hearing from you again.
Chris
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@lauragal
Although my friends stuck with me through thick and thin some of their parents didn't.
Sometimes friends need some time to adjust to the new you. You need to be honest with them about your changes. Not everyone can cope with changes easily, especially medical issues. I have a friend who has a hard time understanding my memory and other issues. It's so easy for him to remember and so difficult for me. I don't think he will ever truly understand. He's a wonderful man and he's always there for me whenever I need him. He'll do anything I ask of him. Sometimes when he's over at my house, he'll just start doing something that needs to be done. He called me to meet him at the airport for breakfast, I forgot. He said "how could you forget, I just reminded you 30 minutes ago". I don't think he has the ability to understand my issues. I don't blame him. I accept him as he is and he accepts me the best he can. That's good enough for me.
But it's not a one-way street. You also have a responsibility too in teaching them how you've changed and have a heart heart with them about the changes. Not wanting them to affect your friendship and what they need to do versus what you need to do to mend your relationship. Many people have hurt me throughout the years. Believe me, I know it hurts, may make you angry. I think that's been the most difficult part of my 60 year epilepsy journey. Lots of it is ignorance but we can help those people by educating them, even though we'd sometimes rather punch them in the nose.
Take care,
Jake