When will it be a normal day?

It's right now 1028 PM in texas usa. I'm drinking responsibly and not drunk. I'm watching a movie with my wife. I've been have short but frequent spells of dystonia and "checking out."

Just now it happened again and I was unable to move in a frozen position. No pain, but all I could do us move my eyes and cry out "hell" I was trying to say help.

It's really tough right now because every day i have symptoms and things that remind me of what i have. I wish i could gain a sense of normalcy.

Please someone tell me that they're like me.

[LEEJUNFAN]

Hi Mathew,

Yes, my wife who has FND, has the same symptoms of just freezing on the spot.

She has to wait a while until it passes until she can walk again.

We're just coming home on a bus now, looking at the Christmas lights, and she gets eye spasms just looking at the lights.

We just try to take one day at a time now, as that's the best way.

Sending best wishes and prayers to you and your family and a happy Christmas 🎄

Tony and Kim xx

Greater Manchester

United Kingdom

United Kingdom

[Hidden in reply to LEEJUNFAN]

Thank you it means much, coming from overseas is pretty cool. And Yes I have a walker for those times when I can't walk.

[Hidden]

You are not alone! I am only 15 years old and suffer from similar things in a way. I have absence seizures due to FND where I will stop what I’m doing and freeze, my friends and family describe me as having a “glosses over look” and then I am unresponsive from anywhere from 1-3 mins. After I am very tired and my speech is slurred and sometimes I have a hard time walking. I try to take things one day at a time and I know how hard it is but you just have to keep living your life and keep a good attitude. There’s been so many times when I want to give up, but that doesn’t make you better or give you some sense of normalcy. I know it’s so different from what it used to be, but keep working, you are so strong!

[Hidden in reply to Hidden]

I think those absence siezures you say have happened to me where I cant walk or talk but I stare. I stood in the door way one time for 10 minutes wanting to move but I couldnt. Then after those times I have a hard time walking about

[Hidden in reply to Hidden]

Could be a possibility, that is what I go through after my seizure ends. But my doctors have said losing the ability to walk is most likely just another symptom from the FND rather than a symptom from my seizures.

[tabey]

Hi Matthew

Your not alone after every hard day i get helped into bed i think please be different tomorow just one day of nothing. but ive come to accept i have a neurological condition I'm not going to label it but it does not go away its still there in the early hours of the morning.

i try and move in bed and one night i could not move but really needed to go to the toilet and the only word that came out was Hippo ' its ok to lauth'

my wife looked me and was like why did you shout Hippo so yep your not alone its come a bit of a famaily joke now

u have a great christmas.

we have to keep lauthing even at ourselfs

tabe

[Hidden in reply to tabey]

yes i've had that. Where i'm lust laying in bed and i cant move. I try to and I can't like the other night I was sitting on my edge of the bed drinking a beer and then a sudden jolt it knocked me to the side next to the window and I couldnt speak but later grew the strength to say hell but I was asking for help.

I woke up today and little issues so I know I have good days and bad days. Sometimes the hard ones have me unable to walk or talk too, and I take baths instead of showers. But the nice thing is that I work on vehicles and machines or pratically anything and my issues go away a lot of the time so its my medicine to keep working things and apply my mind and body.

[pickleweed]

I had the problem of becoming frozen during the early part of my FND. Now I don't have that problem except when I'm waking up. I used to live in Texas...in Brownsville, way down south.

[skifast]

Matthew I am like you!!! Everyday for last 8yrs, you should skype ne or whats app myself to help. Try to watch "The Hidden World of FND" and "Beyond Sport:NickManely on youtube and let me know what you think. I can Help you get thru this!!! skifast007@gmail

[Hidden in reply to skifast]

That's interesting I just might thanks

[skifast]

Yo Matthew yes it will continue. When your body leaves you just do some mindfull meditation type of thinking. So use the experience to put in deep meditaition and lye down where you can only hear nature or something peaceful. Then put yourself I a place where you can be totally happy and relaxed and imagine the peace quiet waves hitting the beach birds flying feeding on the fish etc etc...

Let me know you will be amazed.!!!!

It is 4 am the dreams got to me again. The more I try to control them the more intense they are and when I wake up It feel s like I have just lived through them physically. Going on 9 yrs of this shit and my friends cant believe I do what I do with what there is left. If you want to chat on skype I would help anyone out.

I am a life coach in FND and adaptive sports especially skiing. Para Alpine skiing at world levels. Check out videos onYoutube/Nick Manely

Nick