Sue's story

I was diagnosed with vascular dementia in September 2014 at the age of 58, following 19 months of tests and scans.

I spent some considerable time in denial about the diagnosis and firmly believing ‘they’ had made a mistake.  At that time my only experience of dementia was of an elderly neighbour who had become a ‘different’ person.  It was a terrifying thought.  

In time I began to realise that I had two choices, continue in the depressed and gloomy state or get up and do something positive.

My GP had suggested that in order to manage my cardio vascular risk I ought to try an activity, like running.  Me?  Running?  Who would have seen that coming?  I was for 40 years a hockey goalkeeper, never running any further than from the pitch to the bar.

I joined a local group doing Couch to 5k and 17 months later I completed the 2018 London Marathon raising funds for research into dementia.  I got quite a lot of media coverage, including a live interview on BBC pre-marathon and half-way round on Tower Bridge!

I began to realise that my little story is of interest to others and that I could perhaps do some myth busting around dementia.

In October 2018, I was approached by a TV production company to see if I would like to take part in a documentary about people of working-age with a dementia diagnosis.  The programme was going to be called The Restaurant That Makes Mistakes and I had some initial reservations about that.

I spent five weeks, along with 13 others with a dementia diagnosis, learning how to run a restaurant.  None of us had any previous restaurant experience and the whole process was quite daunting and very tiring.  We all struggled with fatigue, but we quickly became a team, supporting each other and successfully opened and ran The Restaurant That Makes Mistakes in Bristol.  We served several celebrities, family members, friends and members of the public.  I quickly realised that the title of the programme was perfect - not because we necessarily made mistakes, because actually all restaurants make mistakes.

I have made some real friends during the making of the programme.  I have seen first-hand that each and every one of us who live with dementia is different.  I have seen people coping with what I will likely face in time and that has given me hope.  I am still me and the dementia does not define me.

I am really excited for the programme to be seen as I believe it will help dispel some myths, give people hope and encourage employers to make those little adjustments that will mean people living with dementia can still work.

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