Functional neurological disorder

Summerjune15

My names Libby and I am 17 I have a condition called functional neurological disorder word can’t describe how Functional neurological disorder has changed my life functional neurological disorder is often associated with a computer that has a hardware problem and a software problem I don’t have a hardware problem so there is no damage to my brain but I have a soft ware problem where there is problems with the functioning and the signals in my brain FND causes me to have seizures my right leg has temporary paralysis so it comes and goes but I have limb weakness in both of my legs and the arms I also have tremors this is where my arm or leg uncontrollably shake sometimes it can be my full body I have speech difficulties were I stutter a lot or I lose my speech completely I have dystonia were my hands can lock in unusual positions fatigue and dissociative symptoms which just means I feel disconnected from my body or the world it breaks my heart how I’m not in control of my own body and it also breaks my heart seeing the little ones in my family scared as I’m writing this with tears streaming down my face on 6th of March my life was turned upside down within the click of my fingers and a blink of an eye I’ve never felt so broken but I am an FND warrior as so many other people are so currently I am in the process of making my own small business for FND warriors Functional neurological disorder is such a life changing experience❤️‍🩹

Azziman

Hi @Summerjune15, thank you so much for sharing this with us. I can hear how much of an impact having FND has had on your life. It sounds like it has really taken a physical and mental toll, and I can hear how upsetting it can feel when the younger ones in the family feel afraid. Hearing your experience is really moving, and hopefully it helps people here to understand FND a bit better. It's encouraging to hear that you want to set up an organisation for those with FND. I'd be interested to hear more about what your ideas are for this organisation? Is it focused on something broader like advocacy or direct support, or perhaps something more specific? We're here to support you!