What’s it like to have a parent with a brain disease?

Why one conversation can change everything

By VoiceBox ·
image: ColorValley/stock.adobe.com

Emma (not her real name)

Young author

An incurable disease is no match for my mum

I remember when my mum first told me she had Parkinson’s disease. Sat in a cafe in St Pancras station, she broke the news to me in the same way you’d casually mention the new shoes you bought at the weekend. Calm. Collected. Unafraid.

As it turns out, she was the opposite. Right from the moment I first noticed her tremors when we were stood at a bus stop in Oxford, all the way through her endless hospital appointments, medication that doesn’t cure her, and early retirement, my mum wore a mask. A mask that hides her anger, anxiety and sadness that she was given this brain disease. Parkinson’s. The silent attacker.

Parkinson’s disease is a condition that causes part of the brain to become progressively damaged overtime. No one knows what causes it, and there is no cure. Symptoms include shaking and tremors, slow movement, inflexible muscles, balance problems, loss of smell, depression and anxiety, memory problems and the potential to develop dementia.

A successful, self-made CEO, my mum has worked hard her entire life. To quote one of her colleagues “your mum stands tall in a room full of men”, I have admired her work ethic, independence and achievements from a very young age. From the minute she was diagnosed, my mum took the same approach to Parkinson’s as she did her career: no-nonsense, proactive and sympathetic to those who were watching their mother and wife slowly deteriorate.

A slow transgressor, the Parkinson’s only took her arm and leg away at first, leaving a permanent limp and difficulty typing, eating, writing and applying makeup; anything that you use your hands for. Watching my mum struggle to eat for the first time – a simple task that so many of us take for granted – was heartbreaking.

Her anxiety rubbed off on the rest of my family, particularly my younger sister, who was consistently targeted by my mum with concerns that shouldn’t even be a burden to an independent 20 year old. Isolated into a state of panic about her own fitness, weight and medication, my sister became snappy and short tempered as she fought the feeling of being dragged back into her childhood.

The day one of my closest friends found out about my mum’s disease was the day that added hope. A medical student near the end of her degree, she told me about the amazing research that’s being carried out into Parkinson's, a conversation that gave optimism not only to me, but also to my mum.

Having only been diagnosed a few years ago, my mum’s Parkinson’s is in the early stages. She is beginning to enjoy her early retirement, particularly since the added addition of two puppies to the family. Their hilarious antics, neediness and reliance on her has given my mum something to focus on other than her disease, and I’m so excited to see them grow and develop into wonderful dogs – all thanks to her efforts.

Despite the weakening reputation of our NHS, I am certain mum would not have received the attentiveness, care and amazing research into Parkinson’s elsewhere. I would like to take this moment to stop the boorish NHS chit chat that many of us (including me!) whine about on a daily basis, and say a big thank you to everyone who has helped my mum. I truly believe she would be in a very different place if it wasn’t for them.

While she still struggles with her mental outlook, and all the physical impairments that slowly develop with Parkinson’s, she is in a much better place now – and, dare I say it, looking forward to the years ahead.

My advice to anyone who is struggling to come to terms with a family member who has a brain disease, is to be present and in the moment. Despite the initial shock and daily hardships my family has to endure, we have come to laugh and joke about certain aspects of my mum’s illness – and have learnt to deal with it as a unit. While the humorous side doesn’t work for everyone, I would urge you to not segregate yourself from the situation. Enjoy your time together, and remember that you are not alone.

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