"Parenting" a 23YO daughter with grand mal seizures

I like your comment. A neuropsychologist would be a benefit. To live independently within limits but have a fulfilling life is a blessing.

@adoptivemother
Yes, I drive. I have had a couple of incidents while driving. I had a few absence seizures that happened while stopped at red lights. My foot came off the brake and I barely tapped the car in front of me. No damage. Once I turned left leaving the dentist's office, had an absence, and nearly hit a car. Went directly to my neurologist and he increased one of my meds and solved the problem, at least so far.
But you never know when, what type, or the severity of a seizure. My brother's first seizure happened while driving to a garden store in a small sports car and he hit head-on with a station wagon. He crushed both his legs and severed his femoral arteries in both legs. He's now in a wheelchair. So anything can happen to anyone at any time, epilepsy or not.
I know many people with seizures and those who take some risks seem to be happier. I have known some who live very sheltered lives a couple who refuse to ever leave their homes. One is ashamed and embarrassed and doesn't want anyone to see him have a seizure.
People are still ignorant and the Epilepsy stigma is going strong but better than it was in the 60s, 70s & 80si but you have to be strong and let cruel comments roll off your back. Sure it still hurts being told “you belong in a circus” or having religious people saying you're “possessed by the devil” or “your the devil” and wanting you to come to a séance and countless other awful things, not being hired or fired because of seizures. Yes, it's illegal but don't think it doesn't happen. Sometimes you just have to deal with whatever hand life deals you, difficult as it may be.
Take care,
Jake

Thank you for your response. I did not know about the field of neuropsychology! I totally agree that she has not accepted living with epilepsy. Deny and avoid! She does have a therapist and she went through an IOP mental health program after the most recent trauma but none of that was focused on living with epilepsy. I wonder if Mayo will be able to connect us to a neuropsychologist when we go there or if I will need to find one from home. We live in the wilderness 🙂 so it would be virtual anyhow.

Heather

I like the idea of being more aware of triggers by monitoring vitals and habits. I keep telling her to keep a journal (it could be in the notes section of her phone) to record the context of each seizure, what type it was, and how long it lasted so she can develop some sense of what triggers them. I think when someone is that depressed, they just don't have the energy to put towards such things because they are just surviving. It is hard to watch.

I love the idea of a dog! If I could have a service dog, I would be pursuing it immediately myself. She thinks it would be embarrassing to need a dog but she loves animals and I think a constant companion you are allowed to take anywhere would be amazing!

@adoptivemother
The journal is a good idea however, I wonder if she would be able to remember anything about her seizure since amnesia is so common when someone has a seizure. I've had over 13,000 tonic clonic seizures and only have memory of one focal aware seizure so the job of journaling may have to fall to someone else unless her memory isn't affected much.
Take care,
Jake

Hi, @adoptivemother. I'm so glad you are connecting with @jakedduck1 @kb2014 @santosha, who have rich lived experiences to share with you.

When you go to Mayo Clinic, the epileptologist will surely be willing to connect you to a neuropsychologist. There are several in Minnesota. Is that the campus you are hoping to visit, or in AZ or FL, or elsewhere?

@kb2014 - thanks for sharing about the situation with your husband and your seizure risk. That would be challenging not having your life partner respect your disorder. I relate to not speaking to a relative about a certain subject, as you mentioned. I cannot talk to one relative about the news or current events, as our perspectives are so different that it's not fruitful for a good relationship.

You talked about your husband not wanting to pursue therapy or couples' counseling. Do you have a local friend who understands or at least respects your neurological disorder who provides some support? You also talked about trauma therapy. Is that something you'd recommend to others who have seizure risk?

Yes. I am a member of VSN. Veteran Spouses Network. I have a peer to peer support person whose daughter had a TBI from a car accident. Also her husband who was a police officer and retired military did not get treatment for his PTSD until later in life. Yes I would recommend trauma therapy if you have epilepsy because it trains your brain to look at and assess situations differently and improves critical thinking skills. With me one benefit was to learn cognitive distortions and be able to assess safe andunsafe personality traits because epilepsy or not there are people we probably need to consider minimal contact with.

Good Morning Heather - @adoptivemother
My neuropsychologist did my neuropsychological assessment in 2019, this is how I met her (I was facing some memory issues, and the doctor at that time ordered this exam). I was already having sessions with a psychologist, but she was not helping me much. This neuropsychologist was so caring during the assessment that after it I stayed with her. I am sure that at Mayo they can recommend you a good neuropsychologist with experience with epilepsy patients.
I started with her through face-to-face sessions, but then Covid came. We continued with online sessions and we continue this way. It works pretty well for me.
Chris (@santosha)

Hi Heather again @adoptivemother
There is an excellent book called Taking Control of Your Seizures: Workbook. You can easily find it at Amazon: https://www.amazon.com/Taking-Control-Your-Seizures-Treatments-ebook/dp/B01556P55I
I have been in contact with Dr. Andrews through online sessions. She has helped me a lot. She has epilepsy herself and understands very well her patients. On the internet, you can easily find some videos and articles about the Andrews-Reiter approach (scientifically proved). I have copied here one of the articles on this approach: https://epilepsyconference.com/aboutar.html
Dr. Andrews has recommended that I keep a daily journal to learn more about my seizure triggers and not only make notes when a seizure happens. A seizure might not take place right after a trigger, it can take some time and days. For example, I do not have a seizure right after a stressful day or a bad sleep, it might take some time before it happens. By keeping my journal daily, I have learned what my triggers are. As @jakedduck1 mentions, amnesia is so common after a seizure. Before starting a daily journal, I would only make notes after a seizure had happened, having a hard time remembering all the facts before the seizure and understanding the triggers of it. With this daily journal, after having recovered from my seizure, I would go back to my journal and read how my days before the seizure were, making it much easier to understand the trigger or triggers of this seizure. And later, I would discuss with Dr. Andrews how to avoid my triggers or to cope with them. I can say that today I manage my triggers better.
As to seizure dogs, I have copied here a link with more information on it: https://www.epilepsy.com/stories/dogs-household-pets-or-medical-equipment-for-those-living-with-epilepsy?utm_medium=email&utm_source=pardot&utm_campaign=epilepsynews_04032024
On YouTube, you can find good videos explaining more about seizure dogs.
Have a nice day!
Chris (@santosha)

As @jakedduck1, I had the same car incident in 2017, before being diagnosed with epilepsy. Today I understand I had a mild seizure at that time and took my foot off the brakes at the red light and just tapped the car in front of me. But you never know when, what type, or the severity of a seizure. As my seizures are not yet fully controlled, I have stopped driving. But I do not let my epilepsy take my life away from me. I have found alternatives to driving: Uber, walking, and public transport when possible.
Chris (@santosha)