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Living with epilepsy - Introduce yourself & meet others

Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)
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@1634517678

Jake,

Absolutely no criticism at all. I wanted to convey to the folks that you have a lot of experience in may portions of epilepsy. I don't doubt that you have been a fantastic source for many people you never hear back from. Your opinions, I have found accurate for me. The truth be known, I'm a bit embarrassed to say, is have had and still do, a bit of bitterness for what this country has the ability to give, but knowingly drops the ball.

To listen to children's parents is pretty rough. I feel a bit sheepish every time closing the page and going on about my day after reading theirs. After those I feel fortunate, if the term is fair to use.

I thank you for the information you have given me.

Rick

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Replies to "Jake, Absolutely no criticism at all. I wanted to convey to the folks that you have..."
Leonard | @jakedduck1 | May 13, 2019

@1634517678
Howdy Rick,
I was honored by your kind words. I never thought for a second you were being critical. But when you mentioned being cynical I got to thinking I might be somewhat cynical at times. I think probably because I’ve seen the worst of the worst. So many people I knew who died, had seizures made worse by surgery, the falsification of research of pharmaceuticals and medical devices, incompetent doctors, lack of information provided by doctors. etc etc etc. Two high risk people I knew were never told about SUDEP. The use of an anti suffocation pillow may have prevented their deaths. Hazel was only 17. She deserved better from her doctors. Just because I may not want a particular medication, surgery or treatment doesn’t mean someone else wouldn’t benefit from them.
Take care buddy,
Jake

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