We are hope – a blog by Hilary Doxford
This blog was originally featured on the NIHR website.
Whatever your beliefs – love, faith and hope are considered to be the gifts that last. They help us to live better despite the hard reality of life for many people.
My reality is I live with a diagnosis of early onset Alzheimer’s disease and the difficulties it brings me. When I received that diagnosis, knowing what lay ahead, I lived in fear of the future. I lived with the feeling of despair that I’d lost control of my destiny. I felt desolate, despondent, abandoned and very alone (despite a wonderful, supportive husband). I saw no light at the end of a tunnel, and didn’t even know where the tunnel was. It all felt a bit grim.
But soon I realised I could take some control and I began to investigate the dementia research that was happening in the UK and beyond. What I discovered totally changed how I was feeling about my life and my future.
That included finding and understanding the NIHR. What it stood for and what it could mean for me. I like what it stands for and love what it does. I love the curiosity, the anticipation, the excitement, the creativity and most of all the hope that research provides.
I love the fact that the NIHR subscribes to the philosophy of patient and public involvement in its work and enables people like myself to have the opportunity to be involved, to participate in studies, to engage in raising research awareness. I champion Join Dementia Research, developed by the NIHR and partners and I hope I make a little difference.
There are many eloquent patient ambassadors advocating for research, and whatever the disease, hope is the word we hear most. Professionals should never underestimate the power they have to give us hope and should never underestimate the power of inclusion. My involvement has given me a value again and a purpose in life. It certainly keeps me from dwelling on the bad. Instead, focusing on the potential that research provides to improve life for so many.
Since my diagnosis, even in the darker times, hope has always been part of my vocabulary. Today, thanks to my understanding of the research going on, my fear has reduced to concern, my despair is now personal happiness and my hope is great hope. I’ve found my tunnel, I see light at the end and it’s getting closer.
Yes, there is so much hope, the potential for so much good. And in my eyes, the NIHR are definitely HOPE.
The NIHR is running a campaign to mark World Alzheimer’s Month. Find out more on the NIHR website.