My Journey since diagnosis

Reflections on nearly seven years of living with dementia

Nearly seven years!

It feels like yesterday I was sitting in that Consultant's office, reeling from the three words that changed everything: Young Onset Dementia. And yet, it also feels like a lifetime ago, a period packed with more fear, growth, challenge, and triumph than the sixty-odd years that came before it.

10th January will mark the seventh anniversary of my diagnosis, a milestone that calls for a moment of quiet reflection here, on the pages of this blog.

When I first started this journey, or at least when the reality of it set in, I focused on what I was losing. The setbacks of this disease are unavoidable; they are the quiet, often brutal companions of everyday. There is the confusion, the memory loss, the moments of feeling utterly untethered (a feeling I wouldn't wish on anyone). Lockdown showed me the perils of isolation and how a lack of communication and stimulation can accelerate mental decline.

There are the days when my mind, once my sharpest tool, feels like a machine running on fumes. I remember writing about my initial anticipation of losing dignity, a fear that was very real and very heavy.

Receiving a diagnosis of dementia can often make the world feel small and confining, leading to a profound sense of isolation. The complexities of the condition can create significant challenges that shape the daily experience of those of us who are living with it. We may struggle with memory loss, confusion, and changes in our mood or behaviour, which can make it difficult to maintain relationships and engage with our loved ones.

These are the struggles that define the dementia part of living with it.

But the last seven years have taught me that the living part is just as powerful, if not more so. If I look back, I see a landscape dotted with hard-won achievements.

Firstly, there is the power of my voice. I never intended to become an advocate, but the need to redefine dementia for myself and others became an urgent priority for me. I see so many people who, after diagnosis, feel useless and unvalued.

The opportunity to speak at community events (something I am incredibly proud of) and serve as a PPIE representative ensures that my experience, along with that of others like me, informs research and policy. This work, along with writing posts about "The Power of Words," is perhaps my most excellent defence against the disease, turning my story into a tool for change.

Then there is the ongoing battle for independence. The posts I've written on "Independent Living" and "Dignity and Dementia" are not just advice; they are personal manifestos. Every day I maintain control over my life, my choices, and my narrative; that is a victory.

Finding hope in concepts like neuroplasticity (the brain's ability to rewire itself) has been a profound shift in perspective, moving me from passive victim to active participant in my own health.

And of course, there is this blog. This "scrapbook of information, musings and advice," as I call it, is a testament to resilience. It proves that even with a challenging diagnosis, we still have so much to give, whether through volunteering, sharing knowledge, or simply offering a different perspective.

It lets me know that I am not alone (and I hope it does the same for you).

Seven years is a long time. It's enough time to mourn the life you thought you'd have, but it's also enough time to build a new one, one anchored in purpose and defined by fight, not failure.

Thank you for walking this road with me. Here's to finding dignity, hope, and success in the years ahead.