Hi! My name is Sophie Bussell and some of you might know me from my fundraiser on POTS in 2024. If not, that’s okay you can check it out if you want via this link…https://gofund.me/670a16e64

This March & April I am advocating for another under recognised condition called FND. FND stands for Functional Neurological Disorder and it’s a physical disability that can affect any part of your body that the brain controls. It is caused by a problem with the functioning of the body’s nervous system and how the brain and body send and receive signals. Some people reference it to a computer and how FND is a problem with the software in the computer, not the hardware itself. I like to think of it as a messenger in traffic. The brain sends the message to a part of the body, however it gets lost on the way or stuck in traffic and never makes it to the body part that needed it. There are ways to improve symptoms however the treatment is not always available to those that need it and it can be hard to get diagnosed due to the lack of research and awareness.

Thousands of people in Australia already live with FND every day and I want to help those that struggle with FND now and in the future, as I know exactly how hard it can be as just over 1 year ago I was diagnosed with FND after becoming wheelchair bound and unable to walk.

My FND symptoms started two years ago, however it took 9 months to get diagnosed. It wasn’t until I collapsed at school one day and after being sent to hospital, I realised I couldn’t move my legs and that was when I realised something was wrong. At first everyone thought it was just extreme fatigue, however after several days of no improvement the doctors started to investigate further.

On the 7th November 2024 I went to school walking and that afternoon I was officially wheelchair bound. I spent two weeks in hospital trying to learn how to walk again. It was as though my body had forgotten how to move or walk and I was 1 year old again learning how to balance and stand. It was exhausting and painful in ways I didn’t know were possible. I suddenly had a whole new appreciation for paraplegic people and I struggled to understand the fact that my life had changed so drastically in an instant.

I was sent home in a wheelchair after the 2 weeks, confined to the chair and the rooms in my house that were wheelchair accessible. My days consisted of just trying to meet my basic needs of making meals, getting dressed and doing my exercises the physiotherapist had given me. Everything was so much harder and exhausted me beyond anything I can describe.

I was diagnosed a few weeks after and was told that an intensive rehab program in Melbourne was my only chance of recovery. However, as I was about to turn 18 in March 2025, (which was only a few months away), none of the children’s rehab facilities would take me in and as I was not yet officially 18, the adult places didn’t accept me either. This meant I had to wait 3 months before I could even be considered for any rehab program.

This was incredibly frustrating and those 3 months were spent in and out of hospital for a total of 6 weeks as I kept falling at home and going backwards in my small amounts of improvement.

Finally I turned 18 and was able to be put on the waitlist for the Epworth FND clinic in Melbourne, but the waitlist was again 9 months long. I quickly realised there were some gaps and problems in the medical system that needed to be changed. I also had an extremely difficult time adjusting to my new adult life. I couldn’t drive, my birthday present was a self propelled wheelchair and I couldn’t go out anywhere on my own, which made 18 feel very limiting and not as exciting as how all my friends felt. I was completely powerless in my own body which can be quite scary and although people said I handled it so well, to me it felt like my world was falling apart and I had no control over it. However I was determined to stay positive being the one thing I could control and this was very helpful in my recovery as I worked hard each day to take one more step or stand for a few more seconds.

Thankfully, after 7 months in a wheelchair, I got a cancellation appointment and after the physicians assessed my condition, I started the FND rehab program at the Epworth in Melbourne in June last year (2025). I was relieved, excited and a bit nervous because even though my hopes were high, my fears of it not working were also very high. It was an outpatient program and I spent 3 months, several times a week attending physiotherapy, occupational therapy and neuropsychology sessions at the program, as well as practising daily exercise routines and management strategies where I was staying. I was lucky enough to have some very generous friends who let me stay at their home in Melbourne so I could attend the rehab, so I want to give a shout out to John and Cathy Altmann for all the support throughout last year.

The program was intense but it was incredible to see my improvements each week. After two months I was walking without the wheelchair and by the end of all my sessions I was able to run and walk normally for several 100 meters every day which was huge for me at the time having not been able to walk at all for months before the rehab.

It has now been 6 months since I finished my rehab last year and although I still use my management strategies and the wheelchair at times for longer distances, I no longer rely on it daily and I can walk 1km most days at home. I still have symptom flare ups sometimes but I know how to manage them and I haven’t been to hospital since before my rehab. I can drive again and I’m finishing Yr 12 this year, and although I still need to pace myself and allow for rest, I have a lot of freedom and ability to do the things I want to do.

I want to thank all the people who have helped me get to this point including my family, friends, the rehab team at the Epworth, all doctors locally and in Melbourne and all the therapists that worked so passionately with me to encourage and support me on my journey to recovery.

My goal now is to help others that are going through this same struggle, which is why for the next two months in March & April, I will be raising money for FND Australia Support Services Inc. They’re a not for profit organisation in Australia that support Australians living with FND and their carers and families. Their aim is to advance knowledge and services for FND in Australia so that Australians with FND may lead fulfilling lives, reaching their full potential.

As it has been 2 years since my symptoms began I will be aiming to build up my walking from 1km to 2km by the end of the 2 months by increasing my daily walk by 125m each week. Along the way I will be raising money and spreading awareness about FND.

Please donate to help me make a difference. Any donation amount will help make an impact, so don’t be shy to just donate a few dollars. Thank you in advance for your contribution to this cause. It means the world to me and many others that go through this struggle.

To find out more information about FND or FND Australian Support Services Inc. please visit their website at https://fndaus.org.au/