Category: My Journey

The First Five Years Ends

January 2019 brought up 5 years since I think I started to notice changes that led to my diagnosis of Dementia.

The Journey Began around January 2014, with increasing challenges, a diagnosis of Dementia in March 2017, through various challenges to the end of 2017.

Things began to change in the first half of 2018

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

October 2018 saw me Moving Into the Light

I began 2019 with increased challenges from things like Hyperacusis, nearly falling, tiredness and fatigue, along with a feeling that things were changing.

Where things will be in another year, let alone 5, only time and the progression of my Dementia will tell.

To quote Alice Howland in Still Alice:


“Please do not think I am suffering,

I am not suffering,

I am struggling,

Struggling to be a part of things,

To stay connected to who I once was”


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 to continue to live their lives within the reducing limits of that diagnosis.


Last Morning at Woodbrooke

After a challenging day at the Young Dementia UK conference in Birmingham yesterday, the night was calmer than the night before although the air again was crisp and there was a short shower before breakfast.

After Breakfast, there was still time to relax in the garden with a coffee, the sun was now out and out of the wind it was quite warm.

Time passed and it was soon time to say my goodbyes and head off in a taxi to the railway station.

The journey back to Sheffield wasn’t as bad and I arrived pretty much on time and took a taxi home.

Later on Friday night, I was online for the Dementia Alliance International Action Group meeting, a fantastic group of people worldwide, challenging the stigma and human rights abuses, who campaign for change not for themselves but everyone living with or supporting people with Dementia.

I have written this article after returning home and the detail of my time at Woodbrooke has already begun to fade.

I can remember the room but its detail is like a blueprint. I know what was in the room but trying to visualise each piece of furniture leaves me with an image of its outline.


It seems as though the detail is just beyond my reach.

I look forward to being back at Woodbrooke in the near future and relaxing in the gardens, whatever the weather.

Also this week, Young Dementia UK announced new vacancies from Young Dementia UK in Sheffield


Young Dementia UK Conference

After a relaxing day Back at Woodbrooke, all night the wind and rain lashed about outside with the odd branch falling to the floor.

There was a crisp Autumn feeling and the leaves had begun to fall across the gardens.

We all gathered for breakfast and then took taxi’s into the city centre to “The Studio” where the Young Dementia UK Conference, organised by Hawking publications, was being held.

The Studio

After a coffee, the conference began with the opening addresses and the obligatory housekeeping.

There were then a series of presentations, which contained too many facts and figures, too many numbers and graphs and by the break it was beginning to be a challenge to stay focused.

After the break and more presentations came the “Dementia Diaries Live” performance

some relief and humour from the mornings challenges, followed by a humourous talk by Peter Lyttle from Freshers Cafe


Over lunch it was time to meet and talk to delegates, to challenge perceptions and talk about how people with Dementia can be involved in the evolution of Dementia services, challenging the negative narratives and the human rights abuses.

During the lunch break, I was able to meet Dr Richard Hawkins and Mark Ivory from the Journal of Dementia Care and Eloisa Stella, Vice-President and co-founder of Novilunio Onlus Association amongst others.

Peter Berry had presented his cheque for the money he raised from his cycle ride in June from the Welsh coast to the Suffolk Coast


It was just a shame that this was done by the stairs not on stage at the conference.

After the lunch, the conference continued but the continued wave of information became overwhelming for our group, I looked around and they had all gone, to be found behind the Innovations in Dementia/DEEP UK/Dementia Diaries stand on bean bags


I think we were generally disappointed with the conference, my understanding that last year was about professionals and this year about people living with Dementia.

Having written this article retrospectively, the detail of the presentations have long been lost in the fog of Dementia but this is a copy of the programme.


It should have been an opportunity to showcase the work of people living with Dementia under the age of 65, to show what can be achieved with inclusive post-diagnosis support, services and rehabilitation.

To get out the message that the way Dementia is portrayed by society, Governments, Healthcare Systems, and the media is wrong, to turn the negative narrative into a positive one.

To get the message out that you can live your life within the reducing limits of your Dementia following a diagnosis of Dementia.

The Global Disability Summit mantra of “Nothing About US, Without Us” could have been more prominent in the planning.

Eventually we retired to the local Pub and then made our way by taxi to Woodbrooke.

After supper we relaxed before retiring to bed one by one, Wendy Mitchell having left us at the conference to continue her busy schedule in the west country.

Also this week, Young Dementia UK announced new vacancies from Young Dementia UK in Sheffield

Tomorrow would be my Last Morning at Woodbrooke for a while.

Back to Woodbrooke

Recently, I had the pleasure of returning to Woodbrooke, formerly the home of George Cadbury and now a Quaker conference centre in Birmingham.

A taxi took me to the railway station and with my noise cancelling headphones removing the cacophony of noise surrounding me I made it onto the train.

Naturally we were delayed getting to Birmingham, engineering works at Derby causing a stop start progress.

Arriving in Birmingham, later than planned, I took a taxi to Woodbrooke, where the receptionist greeted me with a smile and her broad Brummie accent, seemingly recognising me from my previous visits.

I left my coat and bag in the luggage store as it wasn’t yet time to check in and I got a coffee and went and sat in the garden.

As I sat in the garden with my coffee, it was windy and spitting with rain but I didn’t care, it was time to relax and enjoy the wonderful garden.

I had left Dementia at the door with the judgements and negative perceptions, it would sneak in over my time there but would be sent away like a naughty child.

I bumped in to Philly Hare and Rachel Litherland from Innovations in Dementia CIC who were having a meeting there, Philly would be staying on but Rachel would be off to London later that day.

After lunch, coffee in hand it was back to the garden, the sun had come out and it was quite warm out of the wind.

I sat and relaxed waiting for the arrival of more of my wonderful friends who I would probably have never met if it wasn’t for my Dementia.

From 5pm they began to arrive and by supper time we all gathered in the dining room to catch up.

After supper came the rehearsal for the “Dementia Diaries Live” performance at the Young dementia UK conference the next day.

It began calmly and seriously…


Then the humour began


…until it ended in a fit of giggles.

Sadly, no one was up to taking photos of our “Director of Laughter” Wendy Mitchell leading the rehearsal into chaos and gradually one by one we retired for the night.

It was a wonderful end to the day reader, people with Dementia can enjoy themselves.

Also this week, Young Dementia UK announced new vacancies from Young Dementia UK in Sheffield

Tomorrow would see us at the Young dementia UK conference.

The University of Sheffield’s Dementia Futures 2018 Conference

On Tuesday, I went with other members of the South Yorkshire Dementia Research Advisory Group to the Dementia Futures conference at Sheffield Institute of Translational Neuroscience.


The conference, in it’s third year, is a challenge to PhD students at Sheffield University to present their Dementia research in a non-academic way, so that professionals and people living with Dementia can understand their presentations.

It was supported by the Alzheimer’s Society and the Medicine, Dentistry & Health Research Staff Association (MDHRSA).

David Reid and Julie Simpson opened proceedings and kept things going throughout the day, plenty of humour in amongst the housekeeping and keeping things running smoothly during the day.

Sandra Baker, an Alzheimer’s Society Research Network Volunteer also spoke about her role with the society’s research efforts.

There were 13 students involved, 7 gave spoken/visual presentations and the other 6 produced posters about their work.

Some of the presentations and the posters were easier for me to understand than others but that is the way with Dementia reader,  we all have different experiences/challenges and we all didn’t have the same opinions of the presentations.

If you are one of the PhD students reader, take heart, they were all important examples of research and it will be interesting to see their conclusions at the advisory group.

As members of the research advisory group, we were asked to judge both types of presentations and we chose 1 poster and we had a tie for the best vocal/visual presentation.

The day was also an opportunity for me to introduce the new Dementia UK representative for Admiral Nurses to various people from the University, Alzheimer’s Society and others

Charlotte Harris, is developing Dementia UK services across our region and is interested in bringing Admiral Nurses to Sheffield, which would form one part of post-diagnosis support in Sheffield for people diagnosed with Dementia and their carer/family.

All in all it’s was an enjoyable an informative day and the air-conditioning was a blessing on a hot day.

My Activities

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.


My Research

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

Signage Research

The Angela Project – Improving the Diagnosis of Young Onset 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.