“I thought the nurse was lying. How could this be happening to me? I had three kids; I played music seven or eight hours a day. I was devastated.”
The house he shares with wife Jacqui, a nurse practitioner, is packed with instruments. He gives renditions on each filling the room with, Bluegrass, Spanish classical, honky tonk; each uplifting in the way that music can be.
His two sons and daughter, all successful musicians in their own right, have bought him a specially crafted lounge guitar – it’s light, he doesn’t struggle to hold it like some of the others.
“Life has been cruel and kind to me, I have an amazing family that I’m so proud of, and a gift in music that still gives me so much pleasure. As my Nan used to say ‘you’ve got a gift now go out there and use it!’
“But I’ve had some low times and if it hadn’t been for the post diagnostic support group at Mossley Hill I’m not sure I’d have coped. They care and it comes across.”
“I’m naturally loud, but after I was diagnosed I became introverted, I started stuttering. The community team taught me exercises, helped me to stay in the moment and gave me the confidence to get the words out. They gave me back my confidence.
“The support has been immense. It’s one of the best systems I’ve ever experienced. When we go to the groups and on the memory trips it’s like being on holiday! They see everyone as an individual and that your personality hasn’t changed, you’re still the same person. I always liked to make people laugh; my doctor said ‘you still do that!”
“My wife and I celebrated our silver wedding. I’d always played at parties, it was just that this time she had to hold me up while I played…all I ask of people is don’t judge. If I fall over or I can’t get my words out help me up, let me finish my sentence. I’m a human being with something to give.
Tony’s Occupational therapist Jane Heffey is full of admiration. “It feels so raw when you get the diagnosis, people don’t want to admit they’re struggling. I asked Tony to come back to the post diagnostic group to talk to people who had just been diagnosed with young onset dementia. He’s an inspiration.”
Tony’s latest project is to get his songs and poems published. “I used to write them down but when my hands became shaky so I bought a small recorder – you have to adapt so you can carry on doing the things you want to. By publishing them other people can relate to my experiences – I may not be immortal but my words will be. ”