Guest Blog: FND Personal Experiences

My name is Liam. I’m 22 years old and for nearly ten years I’ve been fighting Functional Neurological Disorder also known as FND. This is my story.

What is FND?

Functional Neurological Disorder is a problem with the functioning of the nervous system and also affects how the brain receives and sends signals to the body. Physical symptoms of FND are genuine but cannot be explained by changes in the brain structure. FND doesn’t show up on a scan. The exact cause of FND is unknown. As of yet there is no cure for FND however symptoms can improve.

FND symptoms may include:

· Paralysis

· Movement problems

· Seizures

· Problems with cognitive function

· Dizziness

· Speech difficulties

· Problems with vision or hearing

· Sensory difficulties

· Pain

· Fatigue

· Sleep problems

My FND story

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. In 2016 when I was 13 years old that’s when my life drastically changed forever. My cognitive skills deteriorated, I became incontinent, needed support to walk 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 physical health. Unfortunately, things then took a turn for worse, I was left suddenly paralysed and unable to talk. I was then rushed to hospital for testing where I spent four months on a specialist children’s neurological ward. At first the doctors were baffled by my mystery illness; they filmed my case for medical research for universities around the world. I had so many scans, tests and assessments but everything came back normal. I struggle to remember the early days of FND and my time in hospital but what I can remember is different faces and bright lights. After months of unanswered questions I was finally given a diagnosis. I was diagnosed with Functional Neurological Disorder also known as FND. A few weeks after my diagnosis I was discharged as there was no cure and nothing more could be done. However my body was still deteriorating.

Deteriorating posture and misunderstanding around my symptoms

A few weeks after being discharged from hospital my condition deteriorated and I could no longer sit up. I was then given a specialist wheelchair however due to my deteriorating posture this didn’t last long. For a few months I attended a special school. 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. They didn’t understand my

symptoms and at times I heard whispering saying “pretending and attention seeking”. That language is completely unacceptable and unforgivable and must never be said to someone who has FND. When that was said I wasn’t able to speak up but could hear what was being said. I would never tolerate anything like that being said about me now but at the time I was still poorly. While at the school my sitting continued to deteriorate and I had to be in a laying down position as my body couldn’t tolerate sitting in wheelchairs etc. I couldn’t cope throughout the day and was in a lot of pain. In the end my body got worse and worse so I had to leave as it wasn’t safe for me due to my deteriorating posture. My body was also unable to tolerate physio, they tried to straighten my body but my body used to fight against them, in the end they had a hands off approach because they knew what they was doing wasn’t helping me. I was given splints for my hands and feet but due to my FND I couldn’t tolerate them. I couldn’t tolerate shoes or certain types of clothing. My head was on my knees but that felt more comfortable than sitting in an upright position.

Three years trapped inside my own body

I 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. The local NHS wheelchair service said no wheelchair was suitable for me. In 2017 I was bed bound at 14 years old. 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. I couldn’t do anything for myself and needed 24 hour care.

Finding comforts and improvements

I couldn’t talk for a year then with support I slowly learned how to talk again. At first just a few words then my voice fully returned. By this time my brain functioning had improved and I could fully understand what was happening around me. Not long after learning how to talk again I suffered from selective mutism and could only speak to my parents. Eventually the selective mutism went away and I could speak to everyone again. When I was poorly I formed a special bond with London and the ITV show Loose Women, it was my dream to visit London and to meet the Loose Women but due to my FND I wasn’t well enough to go. CAMHS who supported me for four years made me maps, progress charts and timelines to help motivate me to achieve my dreams. I was also seen by a specialist team from Great Ormond Street. During this time I was also diagnosed with Dystonia and Catatonia.

Tasting freedom and being back in the outside world

After three long years my physical symptoms started to improve. I learned how to move my arms again and eventually with support I slowly learned how to sit up again. After three years of being unable to sit up and tolerate sitting in upright position my body was finally able to tolerate sitting in a wheelchair. My first outing in years was to collect my new wheelchair. It was only the hospital but to me it felt like a whole new world ready for me to explore. However I still used to lean forwards but my head was no longer on my knees. The wheelchair was a tilt in space wheelchair as my body was recovering from not being able to sit up for years so I only felt comfortable in wheelchair that could tilt back. It took me a few months for my body to sit up in upright position but eventually I was able to sit back in my wheelchair as my new wheelchair was very supportive and aided my sitting. It was also a self

propelling wheelchair. I remember the first time I sat up in that wheelchair and wheeled myself out of the hospital. It was a big moment for me. Everyone in the room and the wheelchair service department was clapping and cheering me as I sat up and wheeled my wheelchair for the first time. It was a proud moment and a day I’ll never forget. It was a day I thought would never happen. At one time I thought I’d never be able to go outside again as I was stuck in my bed due to FND. It felt amazing being back in the outside world again after being housebound for years.

Achieving my dreams

I made it to London! And it was everything I had seen, heard and imagined. I love to take photos of the city on my phone and I have a special London box filled with London souvenirs. I’ve been back many times since and visiting London is part of my rehabilitation. The Loose Women team heard about my story and sent me some goodies and then arranged for the Loose Women to send me a video message. Then a few months later I was invited to the show and met the panellist’s in person at the studio, since then I’ve met 15 Loose Women and planning one more final trip to the show later this year.

Life now

Nine years on from my life changing illness I’m slowly starting to recover and learning to walk again. I couldn’t walk for five years but I’m now able to walk with support! I can also stand unaided which is a huge achievement for me. I still have difficult days with my FND and doctors aren’t sure if I’ll ever fully recover due to the impact of having severe FND. But I now know that I can learn to live with my FND as this is my new normal. I’ve set myself a new goal, my goal is to go abroad! To Cyprus as I have Cypriot heritage and all my favourite food comes from Cyprus. As I recover I also plan on doing more of what I love including visiting my favourite place London. I’m now passionate about raising awareness about FND. My story has recently been featured on BBC East Midlands Today! It was a wonderful experience to share my story and to see my story on the TV was a big achievement.

My message

At 13 I lost my voice, freedom and mobility to FND but slowly with support, hope and determination my life began to change. FND completely shut my body down. It’s had a life changing impact on my life. My message to anyone who is struggling with their FND or any other illness is to never give up hope for the future. My FND took my speech and body away from me but I’m now more determined than ever to not let my FND hold me back from doing anything.

Follow me at: https://www.instagram.com/liamloveslondon/