My journey with severe FND
My journey with FND began in 2016 when I was 13 years old. My physical and cognitive abilities were rapidly deteriorating. I had to leave school as it was no longer safe for me because of my sudden deterioration. I then lost the ability to walk and talk. I was in hospital for many months. The doctors were baffled by my case and at times my symptoms were misdiagnosed and mislabelled as other conditions such as an unknown disorder or developmental regression. Some professionals even suspected I had autism or psychosis. I had so many scans, tests and medical procedures but everything came back normal, my case was for filmed for medical research for universities. I don’t remember the early days of FND and life before it is a blur. For six months my mind switched off and I didn’t know who or what anything was. My brain and body had completely shut down on me. I was left suddenly severely disabled, having all my abilities taken away from me. I was put on loads of different medications but nothing really helped and nothing really worked. Eventually I was given a diagnosis of severe FND and discharged from the hospital not long after as there was no cure and nothing more could be done. I left the hospital in a wheelchair and was given some equipment plus information about FND. My parents were my full time carers as I required 24 hour care. We had lots of professionals involved from across all different services.
FND struck again and it then caused me to lose the ability to sit up. I was given a specialised wheelchair but this didn’t last long because of my deteriorating posture. I briefly attended a special school but had to leave in the end as my posture was rapidly deteriorating plus couldn’t tolerate sitting in a wheelchair and couldn’t cope through out the day. The school environment with FND wasn’t suitable for me as I wasn’t well enough to go and both schools couldn’t handle my neurological shut down caused by severe FND. The local wheelchair service said no wheelchair was suitable for my needs. Every time I was transferred to a wheelchair or different types of equipment I would heavily collapse forwards with my head on my knees. Different chairs and wheelchairs were given but nothing was suitable. It got to the stage where I couldn’t tolerate being on any form of equipment apart from my hospital bed. The only place my body felt comfortable was on my bed. I then became bedridden as a result of my condition. I was bedridden and felt trapped inside my own body. During this difficult time I was also diagnosed with Catatonia and Dystonia. Because of the severity of my FND symptoms I was also seen by a specialist team from Great Ormond Street Children’s Hospital. I couldn’t move any part of my body. My body was stiff and my hands were clenched plus my feet were locked inwards, couldn’t tolerate shoes or even certain types of clothing. I was unable to do anything for myself and was very poorly.
Eventually after a year of being unable to communicate my speech was slowly coming back. At first it was just a few words then eventually my voice returned after being non verbal. That was one of the hardest things not being able to say how I felt or what I needed. When I could talk again I could then say how I felt but I was still very physically disabled when my voice came back so could only just string a few sentences together. I had sleep difficulties as a result of my condition and was put on different sleep medications. I would just lay awake in the night and couldn’t sleep, it was probably because my body was very painful and locked. For years I was a teen who was locked inside a body that had simply shut down. While bed bound I set a goal and this would later help to motivate me in my rehabilitation and my biggest goal was to visit London. But because of FND I wasn’t well enough to go. My different support teams made me London themed progress charts, maps and timelines to help motivate me to achieve my goal. After three years my physical health started to improve. I woke up one morning and my body didn’t feel so locked or stiff anymore. When I was transferred to the specialist tilt in space chair which reclined all the way back my head was slightly off my knees and was able to tolerate sitting in the chair for a minute, before I couldn’t tolerate sitting in anything for even second and I would curl up in a ball with my head on my knees. But for the first time in years my head was slightly off my knees, only a little bit but this was a huge achievement. Eventually after months of emotional and physical rehabilitation my body became more tolerant of sitting again, then I was finally well enough to sit in a wheelchair again. My first outing in years was to collect my new wheelchair from the hospital, it was only the hospital but to me it felt like a whole new world. I then realised this was my new life learning to live with FND.
When I was well enough I made it to London! And I’ve been back many times since to my favourite place. I’ve also achieved other goals such as meeting celebrities and I’ve visited 120 different towns and cities across the uk! Over the years I’ve had many setbacks with my rehabilitation. I’ve had days where my FND has left me bedridden again, but thankfully these relapses only last a few days. After four years paralysed I woke up one morning and my legs felt not so locked. I then eventually did something I once thought I’d never be able to do. After months of preparation and therapy, I stood up! This was a major milestone in my rehabilitation and a day I once thought impossible. I then eventually learned how to take a few steps with support and I’m now learning to walk again but since regaining the ability to stand and take steps I’ve had days where I’ve been unable to walk again, but I think to myself these setbacks won’t last years like they did before as I’ve gone from fighting severe FND to now battling moderate FND symptoms. FND still causes me ongoing physical and mental health challenges. I still have difficult days with FND but I’m determined to never give up hope. The emotional scars of becoming disabled as a teenager are still felt to this day. Just sitting in a wheelchair is a big achievement as there was once a time no wheelchair was suitable. It’s been a long hard battle with FND, painful and very isolating. I’m now pushing to raise awareness about FND and hopefully by sharing my story it will help to shine a light on the realities of the condition.
At 13 I lost my speech, mobility, abilities and freedom to FND but 10 years on I’m now more determined than ever to not let my FND hold me back from doing anything!
Thank you for sharing your story, Liam. What you went through at such a young age is heartbreaking, and it's difficult to imagine spending years unable to walk, speak or even sit comfortably. It's wonderful to see how much you've regained and that you're finally getting to enjoy the things you missed out on. Wishing you continued progress, more adventures and many more trips to London!