Helen's Story

My name is Helen, I am 55 years old and was diagnosed with Functional Neurological Disorder (FND) in 2020, a condition where my brain and nervous system are in a state of malfunction, affecting me both physically and mentally.

For years my husband Ian and I lived a busy and very active life up in Perthshire. We ran a small holding, growing our own food and I managed my own business as a clinical aromatherapist. We were pretty self-sufficient and LOVED life.

I remember when I started experiencing symptoms, battling to walk or feeling debilitating exhaustion. For years I tried to find answers, but was told it was ‘just’ anxiety and depression. Finally, after several visits to Neurology, I was told I had FND and that with so little known about it, there was no real treatment.

At the time, I was suffering from frequent seizures, leaving me unable to speak or move, causing me severe pain and disassociation. I was effectively paralysed because every time I moved, I would have cluster seizures. I ended up bed-bound for over six months and, in that time, my life changed drastically.

I went from being totally independent to being completely reliant on Ian to feed, wash and toilet me. The impact on us was monumental. Ian was completely exhausted from caring for me 24/7, continuing to work and, at the same time, battling to find care support. We had no help, and we were losing our identities.

I remember finally being offered a room in what I can only describe as a ‘hostel’, with no care available, where I would be stuck in a bed while Ian got a ‘break from me’. We were at breaking point, but he was not willing to consider this. And then, my friend told me about Leuchie and I immediately called up Jo in the Bookings team. She was so warm and empathic that, for the first time in years, I felt a glimmer of hope.

On my first stay at Leuchie, I quickly felt safe and welcome and soon realised that it was so much more than just a place for respite. Too often, the individual behind a neurological condition is overlooked, but not at Leuchie, where you are never defined by your diagnosis, you are only supported to live in the best way for you.

On top of excellent 24-hour care, there are so many things Leuchie’s team do to improve your emotional and physical wellbeing over the long term. And the support doesn’t stop when you go home. The team are always at the end of a phone if you need advice or even just a chat. This holistic approach is what makes Leuchie stand out and have real impact for people like me.

I can’t pinpoint just one thing about Leuchie that I love. From physiotherapy and occupational therapy, outings, activities, amazing food and wonderful staff to getting out and about in the grounds, every part of a stay benefits me.

With FND, loud noises, harsh environments and stress cause seizures and the terrible symptoms which come after. Fresh air, nature, relaxing sounds, sensations and smells keep me calm and balanced, so Leuchie’s sensory therapy room and outdoor space have been pivotal in me making changes in my own home to help manage my condition. When Ian notices a seizure starting, he will set up the room for me. Our dog Bella will lie against me, so I know she is there, and I feel safe.

I also now have an all-terrain Trekinetic wheelchair to get out in nature. For so long I've been unable to fully enjoy my garden and the countryside I love, so when I tried the Trekinetic at Leuchie, I knew I had to have it! The team there worked together to help me secure a grant to get one and it has completely opened up my world again.

And it’s not just me who benefits. While I am on holiday at Leuchie, Ian gets time to himself to potter in the garden or just sit, chill and have a beer after work! We are very close, but time apart is so important for any relationship. With Christmas around the corner, I know my December break at Leuchie will give both Ian and I a chance to rest and look forward to spending a lovely festive period together.

I know I am not alone when I say that Leuchie is my second home. It is not just special, it’s absolutely essential for hundreds of other families like mine. Knowing they must urgently raise over £1.5 million in donations just to keep going would be a terrifying thought were it not for supporters, like you, who I know will ensure Leuchie is
here for many more years.

There is nothing else like Leuchie. Whatever you can give this Christmas will be a vital gift for many people who deserve the life Leuchie's team can support them to have. When I come home from a holiday at Leuchie, I feel at peace and full of hope for my future - you can help make that a reality.

Thank you and Merry Christmas,