This page brings together some of the activities that I have been doing since I finally began to live with my diagnosis of Dementia.
Apart from taking part in research, the main turning points were Twitter and the
A Good Life with Dementia course
which then led on to
My first trip to a Dementia Cafe.
First time at my Local Dementia Cafe
DEEP UK – Shindig Group
My First Friendly Dementia Cinema
Activities reader, no matter how small can help us to live our lives within our Dementia.
Since the beginning of 2018, I have been taking part in various research studies.
I would say reader, that taking part in research for me has been a form of enablement and has led me on to take part in other things.
This page is a listing the articles I have written about all the research I have taken part in.
AD Genetics” of Alzheimer’s study
The RADAR Alzheimer’s research study.
A Post-Diagnosis Support Study
Mobility Research at York University
“The Twitter Use of People Living with Dementia” Study
I would strongly recommend anyone with a diagnosis of Dementia, that is able to, to take part in research studies.
Any successful studies may not help us, but they may be of benefit to our children and grandchildren going forward.
This page bring together the articles that form the first 4 years of my own personal story from around January 2014 when I first started to notice changes in my cognitive abilities, through my diagnosis to the end of 2017:
As you will have read, they were challenging times, not helped by a system severely lacking in funding, support, services and a will to uphold our rights.
You may say reader, well that’s just his experience, the exception not the rule.
I can confirm that my experiences are not unique, that the more people I talk to the more common my experiences are, not just in the UK but worldwide.
This has led me to try to advocate for change in my own small way and to raise awareness of the challenges that a diagnosis of Dementia brings.
My experiences over the last 4 years reader, were generally negative
The Journey Begins…
Getting A Diagnosis
Stepping Off a Cliff Into a Dark Hole
but as you will see, things changed in 2018.