There Isn't One Parkinson's Journey: Tony's story
Tony was diagnosed with Parkinson's in 2014. He talks to us about how he manages his medication wearing 'on' and 'off'.
I’m Tony, I’m 83, and I do lots of tai chi.
I was diagnosed with Parkinson’s in 2014. When they asked me what I knew about Parkinson’s, I glibly replied "I know it’s a progressive disease".
I wasn’t too encumbered by it before. But now I have a regular pattern of being ‘on’ and ‘off’. So I have to organise my life according to my anticipated good times.
When I’m on, which is about 2 and a half hours in every 4, I’m fine. I can get on with things. When I am starting to feel off, I go and sit down and let it happen. Before the next pill has kicked in I’m generally very sleepy.
I’ve been in a number of research groups at King College Hospital. The most recent one was with the English National Ballet. I spent 12 Friday afternoons at their headquarters in Canning Town. It’s a wonderful building with huge rehearsal areas.
At the start of the study, the leader, Jonathan, asked if anybody had seen the ballet Giselle. I put my hand up and said that I saw it 60 years ago. He told us we would be doing bits from a modern version of that ballet.
It was absolutely stunning. We had 2 dancers who took us through individual exercises. We started moving much better, there’s no doubt about it. I haven’t run in many years, but they got me running diagonally across the dance floor because they gave me the confidence to do it.
Medication wearing 'on' and 'off'
If your symptoms are well controlled, this is known as the 'on' period, which means that medication is working well. When symptoms return, this is known as the 'off' period.
"I have a regular pattern of being 'on' and 'off'. So I have to organise my life according to my anticipated good times."
Diet, managing stress, and treatments like deep brain stimulation can help you have more 'on' time.