FND/PNES

[Ghost]

I was diagnosed with FND in 2013. It was a heck of a road getting there.
I was recently diagnosed with PNES as a part of the FND.

They don't really know what causes this condition (FND) but most cases have a history of abuse and it goes hand-in-hand with CPTSD.

I've found the FNDHope group on Facebook to be really helpful. 🧡🩵

[Kizzie]

We do or did have a member with PNES Ghost.  FYI members PNES are attacks that may look like epileptic seizures but are not epileptic and instead are caused by psychological factors. Sometimes a specific traumatic event can be identified. PNES are sometimes referred to as psychogenic events, psychological events, or nonepileptic seizures (NES).

A while ago I watched a show about a Canadian young adult who actually had it so bad she ended up getting a service dog.  It was absolutely remarkable how the dog would catch that she was about to seizure. She loved riding horses and could do so again because the dog would scamper along with them and would warn her to stop and dismount if need be.  Amazing!

I hope you do don't suffer from it as badly but I suppose any degree of PNES/FND is difficult. So sorry this is a part of what you suffer due to trauma

[Ghost]

Hey Kizzie,
Thank you for your kind words. 

I've actually worked so hard to get a service dog. Two years ago I even got a puppy to train but every single reason that I need a service dog is the same reason that I can not have a puppy. I took her back to the breeder. It was devastating but I'm trying again.
I have a trainer who will help me, I have a training plan. I just have to wait till after we move, which will be 6 months or so, and then instead of adopting a puppy I will adopt an older dog.
People talk so much about getting as much time as you can with your service dog, but a tasking service dog for a few years is better than no service dog at all.

[Kizzie]

That sounds like a good plan Ghost - adopting an older dog that is. I think the dog in the documentary had been trained to a certain level for a year or two (don't quote me, I can't quite remember), and then she worked with it and the trainers for the last bit.

This is a bit off topic but I have to admit I get a bit angry when I see that veterans have fairly good access to service dogs and here we are with 6 versus 3 symptoms and extra life limiting problems like FND/PNES. It is so the reason I want this site to be a part of getting the word out there that we are this big population of children and people who need just as much help - treatment, services and support - if not more.

   

[Ghost]

Kizzie,
I feel the same way. I very much do.
I appreciate the military and the sacrifices they make and I absolutely want them to get the support they need.
I wish everyone could have the support they need. 
But it is so unfair. Especially if it was a military person who did the harmful things to the person who can't get those same benefits.

I have very big feelings about it. 

[Kizzie]

We should have big feelings about being left behind.  BTW, my H is a retired army officer and he agrees. 

People feel good when they can contribute to buying a service dog for a combat veteran or someone who is disabled, for us not so much. We are not visible nor do we receive the empathy and care we should because few in society want to acknowledge relational trauma. It's unthinkable and painful to admit that so many children and adults worldwide are being abused, neglected, bullied, harassed.... What does that say about us as human beings? 

It's why I think we (survivors) need to adopt the mantra "No more secrets, silence or shame" and demand that we be viewed with respect and afforded the dignity we deserve having survived what we did. It's so difficult to out ourselves I get that only too well, but I do think that's what it will take for us to eventually get what we need.

 

[Ghost]

I fully agree and I love that mantra.

I'm also very grateful to your H. I feel very seen, in a good way.