Category: My Story

Moving Into the light

Things began to change ion the first half of 2018

and then in July I started to Leave the Dark Hole behind

Back to Woodbrooke for the Young Dementia UK Conference

In  october I was on an interview panel for a new part time and voluntary vacancies from Young Dementia UK in Sheffield

which has led to the setting up of a new Young Onset Dementia Support Group in Sheffield.

In October I wrote a letter for a\ website in Italy Una lettera a Eloisa Stella e al popolo italiano

and spent A Day at the Royal College of Psychiatrists

followed by a day in London for a Forum for the Long Term NHS Plan

My participation in research continued with “The Twitter Use of People Living with Dementia” Study – Part 2

Part 6 -The RADAR Alzheimer’s Research Study. 

and a Health-Related Internet Use by Individuals with Young Onset Dementia – A Qualitative Study

At the end of November I was at the UK Dementia Congress 2018

followed by the Trent Dementia – Life with Dementia Conference

and the Modelling Dementia Conference

Also in December my local Memory Cafe announced New Funding and Increased Services at the Parson Cross Forum in Sheffield

I also spent a day at the first DfID/BOND Partnership Forum in London, following being a delegate at the Global Disability Summit in July 2018 and I then went to Brussels for 4 days to attend a European Commission Conference on Cross Border Vulnerable Adults, both of which I have still to write articles on.

One of the new challenges I increasingly faced was issues with noise and you can read about it here

All in all, a busy 3 months and over Christmas the spectre of fatigue and tiredness was becoming a new challenge in 2019.


Whilst I try to show that there is a life to live after after a younger/earlier diagnosis, to offset the stigma of the media perceptions of Dementia, it is in no way intended to belittle the experiences of professionals or care partners who generally have a negative experience of Dementia in the end stage or Palliative stage as I refer to it.

It is because of my experiences of that stigma from the point of my diagnosis that I write these articles to hopefully enable some who follow, receiving their diagnosis.



 

The Journey Continues…

After the first 4 years of my journey with Dementia began in 2014, 2018 marked the beginning of change in my journey with Dementia.

As new year dawned, I was still in that dark place following my diagnosis of Alzheimer’s and Frontotemporal Dementia in March 2017, without the support of the NHS or local Authorities

By the end of March 2018, with the help of the A Good Life with Dementia course ,I had begun to re-engage with life and had begun to reinvent myself.

By the end of June, I had climbed out of the metaphorical Dark Hole  and begun to climb out of the black hole behind.


Whilst I try to show that there is a life to live after after a younger/earlier diagnosis, to offset the stigma of the media perceptions of Dementia, it is in no way intended to belittle the experiences of professionals or care partners who generally have a negative experience of Dementia in the end stage or Palliative stage as I refer to it.

It is because of my experiences of that stigma from the point of my diagnosis that I write these articles to hopefully enable some who follow, receiving their diagnosis.



 

The Journey Begins…

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, rehabilitation, services and a lack of 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.

Whilst I try to show that there is a life to live after after a younger/earlier diagnosis, to offset the stigma of the media perceptions of Dementia, it is in no way intended to belittle the experiences of professionals or care partners who generally have a negative experience of Dementia in the end stage or Palliative stage as I refer to it.

It is because of my experiences of that stigma from the point of my diagnosis that I write these articles to hopefully enable some who follow, receiving their diagnosis.

My experiences over the last 4 years reader, were generally negative and are linked elow in follow up articles:

The End of the Beginning

Getting A Diagnosis

Stepping Off a Cliff Into a Dark Hole

but as you will see, things changed in 2018.