BY AMY HOGGARTH
Hello! My name is Amy. This is my FND story.
I study tourism in Sweden. I developed FND in my third and final year after (we believe; we may never actually know why) a chest infection, suspected pneumonia, and influenza. I kept studying despite feeling awful and hardly being able to move (I have had pneumonia and the other infections before, but not all at the same time, and because I didn’t know I had them all at the same time, I couldn’t understand why I wasn’t getting better!). Fatigue started in February 2016 and never really went away. My Mum came to visit me for Easter and saw I still wasn’t getting any better. She talked to my teachers and we both decided I should fly home as there was no-one to look after me where I was. I returned home to England and saw a doctor and got antibiotics and steroids. I got a bit better (not fully, but over the infections at least), and returned to Sweden as I had things to do.
I returned home in the summer as I was still fatigued and needed help. Meanwhile, a place in Finland on exchange studies was confirmed which I was so happy about and excited for! We solved an issue with accommodation so I was all set. I was determined not to let my body affect my plans as I had looked forward to this incredible opportunity for so long.
I went to Finland in August 2016 with lots of help from my parents. I was still very fatigued but also excited and grateful for my selection to go there.
Three weeks into my studies there, I was in a lecture and FND started- paralysis, drooped face, slurred speech, (still) fatigue, numb legs and I had to ‘walk’ with a drag. The fatigue was still consuming my every effort as well as trying to pretend everything was ‘ok’.
By this point I could no longer attend health appointments or look after myself. My lovely room mate, who became a great friend, would do all she could for me-an angel! However, I felt so bad for her and couldn’t continue. My parents flew out and rescued me and we packed everything back up again and flew out of Helsinki ASAP to get sorted.
In England, I saw a lovely GP who referred me to a great neurologist after performing further tests and scans. My neurologist diagnosed me with FND (after checking for MS etc in a brain scan- I was/am so grateful I didn’t have that or other nasties!). I started neurological physiotherapy sessions, every week to start with, with a lovely neuro physio lady. My main goals were to start walking normally again, to smile as normally as possible again and to return to complete my studies in summer.
Things were put into place to give me the best support possible and slowly I learnt to walk again and to have the most ‘Amy’ body as possible. I am so grateful to everyone who has/is helping me on this journey. Support was put into place at my university which I returned to twelve months after the first symptoms of FND, after having to learnt to walk as much as possible, to look after myself again independently and to get my life back as much as possible. I was also diagnosed with peripheral neuropathy in my face, so did exercises for this and still do. While my face is different from FND and may not recover as well as my body has managed to do, I have come on leaps and bounds from where I was this time almost two years ago!
I have made a Facebook support group for younger sufferers (or fighters who feel young; even if not every day!) of Functional Neurological Disorder in order to create a place to vent, share top tips, and support each other as we go through this journey. This is called Younger FND Fighters and was where the idea for this website first came from. I now work with a fab team of FND Fighters including the creator of this website, Georgina. We communicate on an almost daily basis and have become very close. It’s amazing what the internet can do, how many opportunities arise, and just how supportive networks can be.
My overall aims are to increase awareness about FND and set up conferences and meetings with sufferers and medical professionals worldwide, my focus being particularly the UK and the Nordics. In addition, I made a Facebook support group for sufferers of FND in the Nordics, called Funktionella Symtom-Nordiska Gruppen.
While I would not wish this upon anyone, I am determined to use this life-changing challenge to help others and to do my utmost to raise awareness and increase knowledge of the condition. I am excited for future developments and to see how we can further improve people’s treatment of the condition and support networks.
To learn more about FND, please click here.