My grandparents and Parkinson's

Ella shares how a university project brought her closer to her grandparents.

I don't remember a particular occasion when I was told that my Mama had Parkinson's. She'd lived with it since I was quite young, with my grandad there by her side, and so it was something that for a long time I hadn't really thought about. I was always quite used to the clumsiness and tremors – it was just the way things were.

As I got older I became more curious about it. How did my grandad manage looking after my Mama? How did my Mama manage on a day-to-day basis? And what even was Parkinson's really?

At university, I got the perfect opportunity to find out more, deciding to focus a project about personal experiences of healthcare on them.

I wanted to know about what happened when my Mama was first diagnosed with the condition. Was it a huge bombshell for them? As it turns out, not massively.

Neither of them were overly fazed by the news and they decided to plough on with a positive attitude. Deciding that immediate health and social care support wasn't for them, they embraced local support groups run through Parkinson's UK instead, which allowed them to feel part of a community.

I felt bad for not having known the extent of things.

But my grandad described how, over the years, my Mama's health got worse and her condition deteriorated. It was gradual but started to have a big impact on them.

I knew this was something that affected people with Parkinson's. But actually hearing them describe it was a little overwhelming. She used to enjoy flower arranging but could no longer do this. At the same time, household chores became difficult. She became less able to do things and more dependent on my grandad.

She started having freezing episodes, where she couldn't walk or move properly. Simple tasks like getting dressed became difficult. I felt bad for never having known the extent of things.

My grandad explained how at first he was proud to be a carer, but later realised he was just 'playing at it'. The reality was that it had become a 24-hour job for him.

He had always been massively active, even running the London Marathon aged 60, but now he felt exhausted all of the time. They went through a particularly tricky phase trying to get my Mama's medication right, where she became paranoid and experienced hallucinations – a side effect of some Parkinson's drugs. This saw my Mama thinking there were strangers in the house and even accusing my grandad of wanting to harm her.

My grandad tried to do his best but needed help caring for her. He told me that the lack of sleep was becoming difficult to cope with as it was making him light-headed.

It was at this point they swallowed their pride and reluctantly looked into getting some overnight care for my Mama so that my grandad could get some respite. But he was told that they weren't eligible for financial support and that they would have to pay for this themselves.

Put off by trying to navigate a confusing system, they decided to put this on hold and just carry on trying to cope. As though this wasn't enough, healthcare professionals had recognised that they needed support, but there seemed to be a lack of services available to actually provide appropriate help.

It made me wonder just how many other people found themselves in similar positions.

I would say to any family member of someone with Parkinson's – don't let Parkinson's be a barrier between you and your loved one.

I started to think at this point how two people could overcome so much adversity. They seemed to have lost their identity and their independence.

But then I realised, while talking to them about their lives, that my grandad is an exceptionally strong man, and isn't easily disheartened. His sense of humour is still fully intact.

My Mama, despite being in the more advanced stages of the condition and needing a lot of care, is still a wonderful person who is funny, interesting, and has so many stories to tell. It made me realise that no matter how difficult having Parkinson's might be, it ultimately doesn’t change who someone is.

My grandad gave me a photograph of him ironing while we met. ("Shirts and trousers are a speciality, but skirts and blouses are a challenge!") He explained that it was now part of his regular daily household chores. He said he found it relaxing while listening to Classic FM.

I decided to capture this as a watercolour painting for my university project, with him as a silhouette, filled with images of neurons taken from a medical textbook on Parkinson's. He's still the same person, but Parkinson's is part of his life now too.

It was difficult hearing about the reality of my grandparents' situation and I felt upset that I hadn't found out more sooner. But at the same time it was massively inspiring to hear just how they had managed.

I would say to any family member of someone with Parkinson's – don't let Parkinson's be a barrier between you and your loved one. Get to know them or spend more time with them. It's something I wish I had done sooner.