By: Maja Gawronska, MA
Tommy Dunne is living with Alzheimer’s disease, but he says that he is not suffering with it.
In 2010, he was diagnosed with early onset dementia at age fifty-eighty. He had been misdiagnosed as bipolar eighteen months previously. Six years later, the former rail worker from the United Kingdom has become a role model in advocacy and raising dementia awareness around the world. We first met Tommy on Twitter, where he runs a popular account on living with Alzheimer’s disease at @TommyTommytee18.
He works with the House of Memories, a program run by National Museums Liverpool, and Life Story Network, and he talks about dementia in schools. He has received several awards for his fight against stigma.
“I may not have enough time left to see a world without dementia, but I hope to see one that accepts it,” Tommy said.
He spoke with us about his diagnosis, mission, and common misconceptions about Alzheimer’s disease.
What was the first thought after your diagnosis?
I was fifty-eight. Alzheimer’s, I thought, They said Alzheimer’s—that can’t be. I can think. I can function.
Fear ran through my veins. My blood ran cold. I imagined being still able to think and not being able to communicate with my family, and the only words they would speak to me was, “Are you OK? You look well,” or, “It’s nice here, nice and cozy,” and then being given a pair of bed socks and a bunch of grapes. Believe me, there’s a lot that rushes through a brain that’s not supposed to be working at this time.
How has your life changed after your diagnosis?
My wife was on eggshells the next few months with me, tiptoeing round me, wrap- ping me in cotton wool. I withdrew into a shell and would stay in bed till late, watch daytime TV, and go to bed early. One morning I was really feeling down in the dumps. My wife dragged me up to play golf at our club every day for two weeks, and I was surprised I could still play to a good standard.
Joyce eventually talked me into going into the clubhouse. I sat at a table with her while her friends came up and asked her how I was. It was at this point I realized that when you get dementia you gain a super power—you have the ability to become invisible.
They would have a full conversation about me, “Oh, it must be awful hard for you,” they would say to her, and she would sometimes say to them, “It feel as if its a bereavement. I feel as if I’m grieving. I feel as if I’ve lost my Tommy.”
How did you get involved in combating the stigma?
Around this time, we were offered an eight- week place on the Mossley Hill Hospital sup- port group for carers. It was at one of these meetings that Jill Pendleton (project manager) asked the group if one of the service users would like to be part of the Year of Action on Dementia group. This group was about to change my life.
At the first meeting of the group, which was attended by doctors, the emergency services, representatives from businesses, nurses, health workers, care home owners, I was listening to people’s thoughts on what it’s like to live with dementia. I thought, That’s not right.
What did you say?
I said that when I’m in a room full of people I know, I feel like the loneliest person in the world, because people will talk over me, around me, about me, but never to me. Yet when I’m in a room with strangers, they talk to me—until I say the magic words, ”I’ve got dementia,” and, hey, presto, I turn invisible.
People don’t know how to talk to people with dementia. They don’t realize we still have our intelligence. You see it with people in wheelchairs—people talk to the chair. With a blind person, they speak to the guide dog. Dementia is an invisible illness because we look well.
What needs to change?
People are looking at people with dementia differently now because we are speaking out about what it’s like to have dementia and showing people that we are not just the shells of our former selves. People are in for a big surprise when they realize that we still have our intelligence, we can still think. The only difference is we just need a bit of time to get the words out. The words are in there, so please have patience with us. There is so much to tell.
Do You Know a Successful Ager? If you know someone who is an example of successful aging, please contact us at (858) 534-6299 or email@example.com with the person’s name, contact information, and a brief description of why you feel he or she is successfully aging. We will feature some of these individuals in future newsletters.