Leaving the Dark Hole behind

Having finally Stepped Out of the Dark Hole the fight against the injustices following my dual diagnosis of Dementia and the continuing fight to live my life with my Dementia had begun .

In July, I attended The University of Sheffield’s Dementia Futures 2018 Conference a showcase for PhD students to present their Dementia research in plain English as a member of the South Yorkshire Dementia Research Advisory Group where we judged the on-stage presentations and the posters for their clarity for people living with Dementia.

Towards the end of July I attended the Global Disability Summit in London as a delegate and I wrote an article about my time their for Dementia Alliance International

I continued taking part in research My Research and The Angela Project – Improving the Diagnosis of Young Onset Dementia Study


One day in August, I put some eggs on to boil, yes reader, I know I’m not supposed to touch the cooker, but I was trying to help.

I went to the shops to get some milk and when I got back my wife told me that some cardboard boxes were next to the cooker and had caught fire, luckily my wife noticed before it took hold.

I wrote an article about The United Nations Convention on the Rights of Persons with Disabilities (CRPD) an important tool to fight against the abuses of people living with Dementia.

I continued taking part in Research including Sinage Research , Part 5 -The RADAR Alzheimer’s Research Study. and Technology Research

I was also in Birmingham for my second visit to Woodbrooke for a Dementia Diaries Meet Up


September was a busy month and brought World Alzheimer’s Month and on the 21st, World Alzheimer’s Day

On the 5th of September, The Mental Capacity Amendment Bill reached the committee stage a piece of legislation that could have a major impact on people living with Dementia.

During September I wrote about The Campaign to Ban BPSD , also about it in Behavioural and Psychological Symptoms of Dementia (BPSD) – What Is It and Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It .

I attended my second South Yorkshire Dementia Research Advisory Group meeting, was a judge for the dementia Friendly Awards and I was also back at Woodbrooke for the Young Dementia UK conference.

At the end of September I spoke at a Dementia Action Alliance meeting in Sheffield and attended my first Alzheimer’s Society, 3 Nations Work Group meeting as a Steering group Deputy in Manchester.


A busier time than previously and more evidence about how enabling post-diagnosis support could be.

You may say reader, how can you do all these things with a diagnosis of Dementia.

Others certainly do, they question our diagnosis, say things like “you don’t look like you have Dementia” or “that happens to me” but we do not choose to have a diagnosis of Dementia and have our rights abused.

At this time I am able to do these things but they come at a price afterwards. It is both tiring and the fog of Dementia has it’s revenge.



 

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