Easy step for educating others about epilepsy

@royanthony
Hi Roy,
Thank you for sharing that resource! I believe you meant this link, correct?
https://www.iflowpsychology.com.au/post/understanding-the-cause-and-treatment-of-epilepsy-and-make-life-better
I'll review it tomorrow with fresh eyes—it looks very promising.
I'd also like to share some educational resources that have been invaluable in my own epilepsy journey:
Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093
The Epilepsy Foundation
https://www.epilepsy.com/
Cure Epilepsy
https://www.cureepilepsy.org/
My Epilepsy Team
https://www.myepilepsyteam.com/
Thanks again for your contribution!
Chris

@royanthony
Hi Roy!
I just finished reading the entire article this morning. The piece provides an excellent broad overview of epilepsy that would be incredibly valuable for anyone recently diagnosed with this condition. Thank you so much for sharing it.
One sentence that particularly captured my attention was:
"No two individuals experience epilepsy the same way, but one truth remains: With the right support, information, and action, life can get better."
This echoes what my doctor has repeatedly emphasized to me—that individualized treatment is absolutely fundamental to achieving successful outcomes.
Have a wonderful weekend!
Chris

@santosha I may have responded to you already (you know this short term memory stuff), but your reply above is more important to me now. My neurologist is retiring after our 16 year working relationship. He's gotten me seizure free as of 16 months ago, out of 25+ years of seizures. I'm having difficulty finding a replacement for him. Been communicating with his PA and she advised that a young neurologist will take his place. Asking if I can visit with this new neurologist only to introduce myself during my next and last visit with my present (who is retiring) and she replied "he is pretty busy and may not have time" (sounds promising doesn't it ... a freshmen doctor that has no time to say hello). I uncovered what is know in the industry as a "Transfer of Care" procedure that a present doctor can use to refer a present patient to another doctor. I went this route with my present neurologist and he's sent this doc and my file to an Epileptologist. Hope to hear from her soon. I recommend those in our Group learn more about the Transfer of Care info.

Thank you Roy
Take care,
Jake

@royanthony
Hi Roy,
You haven't mentioned the retirement of your neurologist to me before, at least not that I recall. And even if you did, no problem. It happens to me and to many people with epilepsy, so please don't worry about that!
Hmm, I confess I didn't smile when I read about the attitude of this new neurologist who will be replacing yours.
If I were in your situation, I'd try to schedule an appointment with this new doctor to see how you feel about her and whether there's a good rapport between you. Will she also have limited availability for an appointment? If you don't feel at ease with her, or if she's also rushed during the appointment, I would ask your current neurologist for a second recommendation.
When will your neurologist retire? I think it would be best to explore other options before he retires so that he can support you during this transition and help you find the right fit.
Do you have a Mayo Clinic location that's reachable for you? This could be a good alternative since they have epilepsy centers with epileptologists. Dan (@dannoyes) receives care at the Mayo Clinic in Florida and could share his experience with you if you're interested.
What is your current location? There might be other members of our group in your area who could recommend their neurologist or epileptologist.
As you know, I'm living in São Paulo, Brazil, where things might be slightly different from the US regarding the transfer of care. I hope these suggestions are helpful to you in your current situation.
Chris

@santosha @royanthony, if you can get a referral to Mayo Clinic in Jacksonville, it is well worth the effort, but since you are seizure-free, it sounds like you have a good foundation to move forward and ready for a transition. As we both know neurologists/epileptologists in Florida are very busy. As you said, the transfer of care is essential, especially to ensure that your medications and dosages are transferred to the new doctor. Another thing I would do is ask your neurologist to provide you with your complete patient record so you can keep it archived. This is essentially your EHR which may include imaging reports (MRIs) and EEGs. They are required to provide this to you upon request. In Florida they may charge you for the record, but it is something you want to keep.

As I have mentioned previously, I didn't know how important this was until I went to Mayo and they wanted to receive my entire patient record. A previous neurologist dragged his feet about sending my old EEG, which included a seizure. It was a real ordeal. The old neurologist even said he wasn't sure he even had the old record/reading any longer. It was a lesson learned that I wish someone had told me about earlier.

One really important thing I would stress is that if you have a new neurologist, please make sure he keeps your meds stable, especially if you are seizure-free. I cringe when I stop to think how my old neurologists kept changing my meds or loading me up on new meds. More is not always better.

Dan