#FNDandUS

My name is Lillian & I’m a 19 yo dance student, competitive figure skater & ice dancer. This is my #FNDandUS story.
Because of Covid restrictions, my dance classes were online & I was having to skate whenever, & wherever I could find ice. By Spring 2021 my training was ramping up & if I wasn’t dancing, I was skating. I felt fitter than ever & was so ready for the competition season to start.
But things started to go wrong by Easter, & I was admitted to hospital with severe tonsillitis, then an abscess in my tonsil, then Glandular fever. Looking back, I wasn’t giving my body enough time to recover. I was going straight back to training after every hospital discharge. The day that they told me that I had Glandular Fever, I started to get pain in my hands & feet. Within a couple of weeks I couldn’t walk & I couldn’t use my hands. I couldn’t do ANYTHING for myself.
I was lucky. I was diagnosed quickly. Don’t get me wrong, I was told by multiple doctors that there was nothing wrong with me. I was made to feel like I was wasting their time. I got angry, & I demanded a second opinion, which turned out to be my FND diagnosis.
I went home from hospital in a wheelchair, but I was focusing on getting back on the ice. There was 6 wks until the British Ice Skating Solo Dance Celebration. This was to be the first skating competition since Feb 2020 & I was not missing it. I’d been working towards this for so long. With the support of my coach & Neurophysio, I plotted my route to the competition. British Ice Skating got behind me & by the time I took to the ice in Sheffield, everyone was rooting for me. It was tough, but I did it!
Living with my FND is like trying to solve an ever changing puzzle. It challenges me everyday.
Lillian
#FND #functionalneurologicaldisorder #charity #notforprofit #fndawareness #functionalseizures #LetsTalkFND #FNDAware
@lilli.cub @themgaacademy @ryan_southan_icedance_coach

[@rebeccacooper9121]

I was diagnosed last week. I was struggling with it for almost 10 months, and had no idea. I’m so thankful for my doctors and medical team for never giving up on me with my diagnoses of SLE and FND.

[@louiseshields4394]

I have FND. It’s so strange how you describe your FND as a whole other person in your head (SpongeBob). I can totally relate. I call my FND a naughty toddler. It doesn’t like being controlled. When I let it do it’s thing is’s happier and less problematic in a way, if that makes sense. If I control it, it kicks back afterwards with big movements and jerks. Thank you for your story, I love your positivity. I got diagnosed in May but have had symptoms for 18 months and I’m still struggling with the change to my life. You’ve given me some inspiration to not give up xxx

[@shanti1445]

Demon, got out in Jesus’ mighty name!

[@CleverCAT]

hello i have fnd this is so great, i have been having more remission lately, finally living on my own again, has not been an easy journey but somehow doing better lately, this is really good stuff and helps to see going forward thank u

[@reneerobinson5273]

I love this video, this is me, this how my FND treated me. Thank you Lilli.

[@correttathomas3204]

So glad to see others that has this disorder and be positive.

[@shanti1445]

Demon, get out! In Jesus’ mighty name!!

[@mrssuzybuck2070]

Thank y for sharing your experience with FND

[@karentjebben5055]

Hi Lillian, How wonderful that you've gotten your life back. What a great example of hope you are. Did you have chronic pain? My daughter's FND has her in chronic pain. How did you deal with that? She tries to live her life as normally as possible, but the pain is constant.

[@mrssuzybuck2070]

The strange bit that I find is why is it so unpredictable when sometimes it happens sometimes it’s stops it has hit me hard because I’m now so cautious to go out incase it happens has changed me as a person now because with FND if it takes your speach and tremors in your hands how do u get help it s such a puzzle to me I got it last year after my second vaccine it was only thing I did differently in my life then all these things happened to me in a year finally this year got diagnosed with FND I was crying because I know my self something happened I had Nead non epaletic seizures that was hard enough to manage but I knew we’re I was with them from 2010. Till 20.22 FND is more challenging it’s just the random things that happen speach tremor walking or not legs not working feet turned in hands twist lock in voice control or no sound I’m just like left to manage it with no support I don’t understand why there is so little compassion from nhs I know it’s long letter I just feel lost in this how do or people cope and feel very inspirational young lady s story I seen on here about ice skating and dancing I just feel lost me in all this

[@erika.extremaydura]

I start to have FND when I was like 13-14 years, I get my diagnostic at 33 years. Its funny you call your fnd problem bob, I call my trembling hand Thing like Addams Family xD

[@Tiare619]

I can’t always walk right on flat surfaces around people, but even if my legs are being spazy, they won’t be on stairs. I also have to stop and slow down to get my muscles cooperating with me.

[@DLJoLo]

I have so many questions, one of my biggest is, can it go away? Will I have times it can come back? I landed in the neuro ICU for a week but fortunately in one of the top in the country so I am set up with good after care (first OP with neuro and PT/OT/ST coming in a few days!) The last several days I wake up and I can walk again. Of course other areas have sprung up to take that symptom’s place, I’m worse cognitively, still bed wetting, pain, some spasms but tics, vocal tics, walking, standing, dystonia, jerking, it’s all better right now! It makes me wonder, do I really need help? But then again I still don’t completely understand this disorder… I don’t know if it can just decide to disappear. The neurologist assigned to me and who dx’d me specialized in movement disorders. He was very optimistic but steered far away from “future” questions. Saying with this we just go day to day, and maintaining a positive outlook will be key. But I still can’t grasp what this is. Will I have periods of good and bad from now on? Could I be better already and not need walking aids? If I’m better do I need PT? I’m more confused now than anything else. I see these videos of people back in sports and it leads me to believe you can go through PT and be better and not have problems with it anymore. How should I be viewing this disorder? I can’t seem to sort it.

[@user-bp1mz1bl2l]

What did you do to treat it?

[@sebastiancampos4197]

Hello, guys! One of my closest friends was recently diagnosed with FND. Half of his body is paralyzed, he's receiving treatment and has made some progress since then, so I'm not too worried about him. But the interesting thing about his case is that he had several dreams prior to the onset of his symptoms in which half of his body was a statue. Has anyone here ever gone through a similar experience?

[@FNDHope]

Hi Sebastian, we are so sorry to hear about your friend. We have lots of information we can share with you 1) Our website houses lots of information www.fndhope.org 2) We also have FND Patient Booklets which provides information on FND, which can be ordered here: fndhope.org/fnd-patient-booklet/ 3) We also offer Peer Support Group and Online Movement and Wellbeing Classes: www.fndhope.org.uk/events/category/fnd-event/uk-event/fnd-support-group/ 4) Your friend may also be interested in the myFND App which allows our FND community to track symptoms over time with some great grounding techniques. We will be supporting the launch of the new app very soon: myfnd.co.uk/ We hope this helps

[@sebastiancampos4197]

@@FNDHope Thanks so much for the reply!

[@kristenwhite2701]

Muscle memory

[@susancuthbertson6357]

Yes! Muscle memory along with the tenacity to keep doing it until those pathways in her brain reconnected.

[@kerryswift582]

I got told I have FND today