Belfast woman Liz stunned by Oprah Winfrey's support for Alzheimer's Society
Exclusive: Charity's award tribute to Alzheimer's sufferer
Oscar-winning American actress and TV presenter Oprah Winfrey has praised the pioneering work of a remarkable Belfast woman who has been campaigning to raise awareness about Alzheimer's disease ever since she was diagnosed with it 10 years ago.
Liz Cunningham, who was told she had dementia at the unusually young age of 47, has also been honoured with a lifetime achievement award at a Europa Hotel ceremony by the Northern Ireland Alzheimer's Society.
"I'm so honoured," says Liz. "The Society's award has made me very proud."
But the 57-year-old mother-of-two was stunned after Oprah Winfrey, who has been at the forefront of drives in the US for more help for Alzheimer's sufferers, made contact.
"She had apparently read about me online and on social media. And she sent me a tweet recognising the work I have done. It was a very pleasant surprise," says Liz, whose husband is called Philip and who in the best regal traditions of her namesake has a pet corgi.
Liz was a highly successful IT specialist, designer and trainer but during her last job with the Cedar Foundation, who support vulnerable people with disabilities, things started to go wrong for her.
She recalls: "Looking at the keyboard in work the words were going all over the place and I self-diagnosed myself as having dyslexia. But I was starting to get lost in the building and finding it difficult to find words that I was looking for.
"I was beginning to think I was going mad. My balance was also badly affected. One day I had to ring Philip to come and collect me. I got into the back of the car and I broke down in tears. That was the end for me with the Foundation."
Liz went to her GP seeking answers. "I was told it was the menopause," she sighs.
For the next six or seven months Liz shied away from the world. "I didn't talk and I was eventually sent to a psychiatrist who told me there was more going on than mental health issues.
"She sent me for scans and after three years it was finally confirmed that I had a rare form of Alzheimer's called posterior cortical atrophy (PCA) which sees areas at the back of the brain starting to shrink and shrivel.
"It was like waiting for a time bomb to go off. I was always wondering what was going to happen next," says Liz, who knows that people still find it difficult to believe she has Alzheimer's.
"On the outside I know that I may look fine. But as well as difficulties with my memory, I also have many other PCA-related problems like breathing because the brain isn't sending the right signals to other parts of my body," reveals Liz, who refused to bow to the dreadful diagnosis and instead launched her fightback by trying to learn more about the disease.
"I started to join various committees who were working with dementia.
"I also began to do talks and speak at conferences on behalf of the Alzheimer's Society to inform people about dementia and let them know, for example, that the disease isn't solely about memory loss."
Liz admits that the biggest and saddest gaps in her recollections are of her children growing up. "However, when I see photographs of them it sort of comes back to me," she adds.
For Liz the most important message to get across is that "I am still me. I can still do things, I just do them a different way".
Crucially, Liz and Philip, who've been together for 38 years, sold their house on the Shore Road to move to a home in the dementia-friendly Hemsworth Court development off the Shankill Road that was better suited to their needs.
Says Liz: "Everyone thought Hemsworth Court was a nursing home. But it's not. It gives people with dementia the chance to live independently but there's help at hand if you need it."
In the early days after her diagnosis, Liz and Philip were able to enjoy cruises and holidays at the top of their bucket list and she has also returned to one of her first loves, painting.
She thinks that her work in IT has helped her cope with the disease. And she has a voice-activated Alexa smart speaker to prompt her about dates and jobs she should be doing.
Liz also feels her faith has played a big part in her handling the upsets that life has dealt her. She says: "I never thought too much about religion in the past but a while back after I came out of hospital, I felt something inside and it has changed me.
"I was angry at everything but now I'm more at ease and more settled and we go to a church just across the way from our home. I read my Bible too and listen to audio books."
The award from the Northern Ireland Alzheimer's Society recognised the wide range of work that Liz has undertaken to promote their cause.
Liz Morrison from the Society says: "For our 40th anniversary we wanted to honour Liz with a one-off lifetime achievement award. "It's staggering what she has done for dementia awareness and the difference she has made as an ambassador."
Liz - who has been featured in national newspapers and magazines and in documentaries - pushed through a number of initiatives in dementia care including the development of training for staff in hospitals and in universities. Using her IT skills, Liz also set up a charity and a website for professionals to access the resources they required to enhance their work.
Heather Lundy from the Alzheimer's Society says: "Liz is an astonishing lady. She featured in 'Still Me' advertisements on the backs of buses and she was also part of the team who took the Dementia Awareness campaign to Stormont."
Liz, who's encouraged by the growing numbers of shops and businesses who are becoming more dementia friendly, was humbled to be asked to open a new facility for people with Alzheimer's in the Northern Ireland Hospice.
However she warns that there's an urgent need for more action to tackle Alzheimer's. And she's hoping that Prime Minister Boris Johnson will honour a promise to dementia sufferer Barbara Windsor, the Carry On and EastEnders star, to provide more support.
In the meantime, Liz says she will carry on with her campaigning. "I want my work to be a legacy for my two girls and my grandson," she adds.