My FND Story by Liam Virgo

My name is Liam and I’m from Nottingham. For almost ten years I’ve been fighting Functional Neurological Disorder. This is my story which I’m proud to be sharing with FND Dimensions.

Before FND I was happy and healthy. My symptoms first started when I was 12 but then rapidly deteriorated to the point where I had all my abilities taken away from me. Then in 2016 at the age of 13, I started to experience severe FND symptoms. My cognitive skills deteriorated, I needed support to walk, I became incontinent and I didn’t know what was happening around me. I had to leave the school I was at as it wasn’t safe for me due to my deteriorating condition.

Things then took a turn for the worse and I could no longer walk or talk. My brain and body had completely shut down on me. Within a few days I lost my ability to walk and talk. I was rushed to hospital for testing where I then spent four months on a specialist children’s neurological ward. The doctors were baffled by my mystery illness and said I had an unknown disorder. They filmed my case for medical research for universities around the world. I struggle to remember the early days of FND and my time in hospital but what I can remember is faces and bright lights. While in hospital I had many visitors and get well soon cards. At times my illness was misdiagnosed as other conditions such as Autism, Psychosis and they also thought I could have Motor Neurone disease MND. Eventually after months of unanswered questions I was diagnosed with Functional Neurological Disorder. A few weeks after my diagnosis I was discharged as there was no cure and nothing more could be done.

Once discharged from hospital I was given a wheelchair, hospital bed, toilet chair, hand splints and other specialist equipment. I had at least 20 different professionals involved in my care. Then if my FND couldn’t get any worse it did, I then lost my ability to sit up. I was given a specialist wheelchair however due to my deteriorating posture this didn’t last long. For a few months I attended a special school however this wasn’t suitable for me as they didn’t know how to support me or look after me as they had never come across someone like me before who had FND. At times I would hear whispering saying “attention seeking and it’s all in his head”. That language is completely unacceptable and unforgivable and must never be said to someone who has FND. At the time that was said I was non verbal so couldn’t speak up but I would never tolerate anything like that being said about me now. My posture was deteriorating rapidly while at the school so I had to be in a laying down position all the time. In the end I had to leave as it wasn’t safe for me due to my deteriorating posture and I couldn’t cope throughout the day.

My body was continuing to deteriorate and I was also diagnosed with Catatonia and Dystonia. It got to the stage where my body couldn’t tolerate sitting in any form of equipment apart from my hospital bed. The only place my body felt comfortable was on my bed. I was then bed bound. I was bedridden for three years, I felt trapped inside my own body. It was like being awake inside a body that had stopped working. For years I saw no way out locked inside my mind and body.

For a year I was non verbal then slowly with support, hope and determination my life began to change. I slowly started to learn how to talk again with support from speech and language therapy. At first just a few words then eventually after a year of being unable to talk my voice fully returned. By this time my brain functioning had improved and I could fully understand what was happening around me. I was also supported by CAMHS for four years. Due to my severe FND I was seen by a specialist team from Great Ormond Street Children’s Hospital.

When I was poorly I formed a special bond with two things and they were London and the ITV show Loose Women. I saw London on the TV and thought It looked amazing. My mum put Loose Women on one day for me and I loved it, then watching the show became part of my routine. Then one day I said it’s my dream to visit London and to meet the Loose Women. After this was said CAMHS, Great Ormond Street and other professionals involved in my care came up with a progress chart to help me achieve those dreams. If I moved an arm or held something in my hand etc I would get a point so that would mean I am one step closer to achieving my dreams.

Then eventually after three long years my physical health started to improve. I slowly started to learn how to move my arms again, feed myself and biggest achievement of all was that my body slowly started to learn how to sit up again. I woke up one morning and my body didn’t feel so stiff anymore. My head used to be on my knees when I was transferred to any type of equipment but that morning for the first time in years my head was slightly off my knees only by a little bit but that was a huge achievement. A few months later and my body slowly became more tolerant of sitting in other types of equipment.

Due to my FND I wasn’t well enough to return to school so I was home tutored by Simply Sensory. I had a wonderful three years with my home tutors, we did day trips, sensory play, rehabilitation sessions, food tasting, baking and lots more fun activities. You can see what I got up to and my rehabilitation journey on their Facebook page https://m.facebook.com/SimplySensoryTrainingandSupport/?locale=en_GB

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 ready to explore. As I sat in my wheelchair it was big moment for me after being bedridden, it was a self propelling wheelchair and as I wheeled out of the room all the staff on the unit, patients and those who were with me were clapping and cheering me. It was a proud moment and a day I’ll never forget. It was the start of my adventure and new life learning to live with FND.

I was then off to London and it was everything I had seen, heard and imagined. I’ve been back many times since to my favourite place. The Loose Women heard about my story and sent me a video message then a few months later I was invited to the show and met some of them, since then I’ve met 15 Loose Women!

Nine years on from my life changing illness I’m slowly starting to recover and learning to walk again. Doctors aren’t sure if I’ll ever make a full recovery due to the impact of having severe FND but I now know that I can learn to live with my FND. For five years I was unable to walk but I’m now able to walk with support and can stand unaided. I’m looking to raise awareness about FND and show the life changing impact the condition has. My story was recently featured on BBC East Midlands Today, it was a big achievement to see my story on the TV! As well as my first TV appearance I’ve had my story featured on over 30 websites/online media.

When I was 13 years old I acquired a life changing disability that would have a major impact on my life for years to come. From being active to being placed in a wheelchair, to being bedridden and locked inside my own body, the impact of having severe FND is still felt in my body to this day. But in recent years I’ve made huge progress in regaining my mobility and speech. I’m rebuilding my life and the future is hopefully looking brighter for me because I know if I can get through all of that I can get through anything.

My message I want to get across is that just because FND doesn’t show up on a scan, doesn’t mean it’s not real. FND is a very real and a debilitating condition which needs more awareness and understanding. There’s been times my FND symptoms haven’t been understood due to lack of understanding and this is what I’m trying to change, by sharing my story I hope by doing this it will shine a spotlight on FND and most importantly raise awareness about the condition. Also never give up hope for the future and even if something looks impossible nothing is impossible. Dreams can come true so never give up on achieving your dreams and goals!

I’ve had a very long and emotional journey with my FND. My next goal is to go abroad to Cyprus. I have lots of new and exciting plans. At 13 I lost my voice, freedom and mobility to FND but I’m now more determined than ever to not let my FND hold me back from doing anything.

Here are some links to other articles about my FND story.

https://www.bbc.co.uk/news/articles/ckgxd88lgy4o.amp