Bruno's Battle to Beat FND

Dear Friends and Family,

Those of you who know our family well would know that we are not the type to ask for help. Mum and Dad have instilled in us a “get up and get on with it” attitude. But when it comes to family and friends, Mum and Dad have never been afraid to lend a helping hand and always ensure that anyone who visits their home is greeted with love and leaves with a belly full of food. So, in writing this, we want to acknowledge that Mum and Dad would be embarrassed to know we have prepared this. However, as their children, we want to try and help our parents in any way we can.

For those of you who don’t know, Dad has not been well for the past 8 months. It started late last year, when he began to walk with a slight lean. Admittedly we laughed at him at first. Progressively this got worse so much so that Dad is now unable to stand up or sit straight. His body wants to fold in half. Walking is an extremely difficult task – for someone who used to run with ease, a simple walk down the hallway is exhausting and impossible to do upright. Likewise, the shortest trip in the car is a torturous journey. For months Mum and Dad sought an answer. They conducted every single test imaginable. Dad was alarmingly misdiagnosed several times – from being told he had a brain tumour to being told he had Motor Neurone Disease. This caused unnecessary stress. Finally, approximately 4 months ago Dad received a diagnosis – Functional Neurological Disorder or FND. Our family had never previously heard of this condition, and with time we are understanding that very few practitioners in Adelaide truly understand this condition. Broadly, FND is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals. FND patients can experience a variety of symptoms that are physical, sensory and/or cognitive. In layman’s terms, Dad’s “hardware” is working fine but his “software” has malfunctioned, causing the rest of his “computer” to not function properly. 

As already mentioned above, in Dad’s situation his symptoms are currently presenting in such a way that his body has essentially “forgotten” how to stand up straight, how to walk and how to sit upright. Probably the hardest thing to see, is how the thought of holding his grandchildren has now become a daunting task. Dad spends most of his day lying on the ground in a fetal position. On top of this, Dad has involuntary movements. These have changed over the course of time – they began with involuntary stomach spasms and are now causing constant head nodding and rapid eye blinking. This all makes rest and sleep so hard to achieve.

A flow on effect of this condition has been severe anxiety and panic attacks. Our family has certainly not been immune to mental illness. However, never did we think that our Dad, that one person who always seemed so strong, would suffer so bad.

Whilst we are so incredibly grateful that Dad’s diagnosis is not terminal, we also recognise that in Dad’s current state he is unable to work and his road to recovery will be much longer than expected and with that, expensive. It would also be fair to say that for someone who was previously in great health and extremely fit (regularly running 10km at a time and playing golf), this condition has impaired his and Mum’s life significantly.

There is no known cure to FND. However, via a combination of treatments from neurophysio, neurologists, psychologists, psychiatrists and alternative treatments such as Bowen therapy, naturopath etc we are hoping that Dad will be able to recover - the aim of treatment is to retrain the brain, in Dads’ case to relearn normal movements and activities.

Dad has always been an incredibly dedicated man. Dedicated to his family and dedicated to work. If we can learn anything from Dad’s condition it is this – you need to look after yourself and your mental wellbeing and look out for others – stress can have so many side effects and to see stress manifest into a physically disabling condition has shocked us.

We understand that 2020 has been an extremely difficult year for the entire world, for so many reasons. We also understand that because of this there are many people doing it tough right now. So, friends and family, we completely understand if you are unable to donate to Dad’s battle and we want everyone to know just how much we all appreciate anything you have done to help our family – your calls, messages and love are not overlooked and mean the world, not just to Dad, but to Mum and us too. Ultimately all we want is to see our champion Dad running his beloved City to Bay again but most of all mucking around with his grandchildren who think the world of him.

With love, Matt, Zena, Angelo, Stef, Sarah and Dad’s greatest love, his grandchildren Siena, Xavier, Sofia and Luca xo