In 2010, former rail worker Tommy was diagnosed with early on-set dementia at the age of 58 after previously being misdiagnosed with bipolar 18 months previously.
When speaking about first being diagnosed with the condition, Tommy describes how his whole world had collapsed and how he was automatically given a super power; the ability to become invisible.
“You can walk into a room full of people and they can talk about you, around you and over you. You could become the loneliest person in the world.”
After his diagnosis, Tommy visited a support group where he offered his insight into what it is actually like to live with dementia and how it makes you feel. He was then invited to Goodison Park by Everton in the Community to give a talk to participants on a newly launched Pass on the Memories group which, with the support of Mersey Care NHS Trust, supports people living with dementia and their carers.
Tommy started attending the session every week and made friends who, in time, formed their own community. With the help of the group he has been taught new skills such as how to use an ipad which have enabled him to keep in contact with his family all the time and help to combat the feelings of loneliness.
“I started coming to Pass on the Memories and I started getting my confidence back. This group has actually saved my life. It’s made my life. It is my life.”
Tommy has previously talked about how the provision provided by Everton in the Community and Mersey Care NHS Trust has filled a big gap for people living with dementia as not everyone is comfortable with going to a hospital to attend a support group but going to Goodison Park and talking about football, looking at memorabilia and sharing stories on your own city means that more people will go and open up.
“People always say that you are suffering with Alzheimer’s but there is no physical pain with dementia, there is terrible frustration obviously but people always insist that you are suffering with dementia but you’re not. I live with dementia and I live well now.”
Five years on from his diagnosis,Tommy now works with the House of Memories programme, run by National Museums Liverpool, and Life Story Network as well in raising awareness of dementia in schools. He also chairs the Mersey Care Service Users group as well as sitting on the board for Liverpool Dementia Action Alliance.
With his experiences of living with dementia Tommy has become a positive role model in raising dementia awareness around the country and has received a number of individual accolades in recognition of his work in combatting stigma including being named as the Community Champion Recovery Award as well as claiming the overall Winner of Winner’s gong at the 2013 Mersey Care Positive Achievement Awards and picking up the Individual Award for Film to support people newly diagnosed with dementia at the 2014 World Health and Design Forum
Tommy now volunteers with Everton in the Community on a weekly basis and spends his time talking to participants on Pass on the Memories and sharing his experiences and advice.
“I’ve seen people become like a flower when they open up and bloom. It’s a wonderful feeling and that’s what helps me get out of the bed in the morning; that feeling of helping others."
“Everton in the Community has given me my life back. They brought me from the abyss up to the pinnacle of where I am now.”
Everton in the Community is committed to improving the health and wellbeing of the people living in Merseyside and delivers many responsive and multi-dimensional programmes that tackle a range of identified and emerging public health challenges.
For more information on the programmes delivered by the charity’s Health and Wellbeing team click here.
To help Everton in the Community continue to deliver life-changing opportunities to help more people like Tommy click here.