Neurological issues can affect so many parts of a person’s life: speech, movement, memory, independence and even personality. Conditions such as brain tumours, brain injury, stroke, dementia, Parkinson’s disease, epilepsy and motor neurone disease can have a huge physical and emotional impact, not only on the person living with the condition, but on their family and those around them.
And then there is the part we don’t always like to talk about: mortality.
From my own lived experience, I know how confronting this can be. Many patients will have been asked to think about things such as a living will, essentially being asked to look ahead and consider what they would want if things didn’t go to plan. I know I was. At 51, having to think about those things certainly wasn’t on my bucket list!
It makes you stop and think. Suddenly, the future can look very different. You start asking yourself what really matters, what you want people to remember, and what you want to leave behind.
Mortality is something we all have to face eventually, factually we are born and we die, but a serious neurological diagnosis can bring that reality much closer. There can be fear, uncertainty, frustration and grief. There can also be a strange clarity. When life suddenly feels less certain, the things that once seemed important can seem much less so, while relationships, family, friendships and memories become even more valuable.
And that is where I think legacy becomes so important.
Legacy isn’t necessarily about money, possessions or huge achievements. It can be much simpler than that. It can be the kindness you showed someone, the knowledge you passed on, the stories you shared, the laughter you created, or simply the difference you made to another person’s life.
We are incredibly lucky in Jersey to have so many charities supporting Islanders in so many different ways. They provide vital support to people and families when they need it most. But, at the same time, the sheer number of charities and the gaps they are filling also tells us something about where the gaps in more traditional or “normal” care can sometimes be.
While Jersey does not currently have a central register recording everyone living with a neurological condition, thousands of Islanders are affected. In 2024, around 2,040 people were registered with stroke or TIA and around 840 with dementia alone, according to the Government of Jersey.
Many charities, including the The Sophie Reid Neurological Association depend on self funding, donations and legacy. We look after the present and think about the future, and what changes and support we can provide.
For someone living with a neurological condition, thinking about legacy can provide a sense of purpose and continuity, particularly when independence or physical ability starts to change. You might not be able to do everything you once did, but your experiences, your values, your stories and the relationships you have built still matter.
And legacy isn’t only for the person who is ill. It can become incredibly important for families too. Photographs, letters, memories, traditions and stories can help keep someone’s presence alive after they are gone. They become little pieces of that person that continue to live on through others.
Ultimately, neurological illness reminds us just how fragile life can be. Mortality reminds us that none of us are here forever. But legacy reminds us that our lives can have an impact far beyond our own lifetime.
Perhaps that is the real hope in all of this: life isn’t only measured by how long we have, but by what we do with the time we have and the difference we leave behind.
If you need help or support, please contact us. If you want to help in anyway, we are open for disussions.
Fiona Potts
Vice chair SRNA