"...it is my Parkinson's to deal with..." - Tony's story

Tony was still working when he first began to notice something was wrong, 12 years ago. “I noticed when people left messages, I couldn’t write down their phone numbers as quickly as they were saying them. Ordinary handwriting took a lot of time and effort,” remembers Tony. “But I honestly didn’t think it was anything other than advancing years.”

3 and a half years later, it was a worsening tremor that led him to visit his GP. Tony remembers: “The GP told me she would refer me to a specialist because she thought it might be Parkinson’s - but that it also might not be.” After a series of tests with a specialist, Tony received his diagnosis.

“The consultant asked me what I knew about Parkinson’s and I replied glibly, ‘Well, I know it’s a progressive disease.’ He replied, ‘Ah, I think we can talk about that.’”

Tony was quickly referred to a Parkinson’s nurse who explained more about the condition and arranged physiotherapy for him. She also noticed he was speaking quietly so organised a referral to the speech and language therapy team. 

“I was surprised and concerned by the diagnosis, but the Parkinson’s nurse told me everybody’s Parkinson’s is different and that it’s my own to deal with,” recalls Tony. “She was very encouraging in lots of ways.” 

Working together

Tony was advised to start medication, which quickly made a big difference to his symptoms. But he has had to work with his Parkinson’s nurse to address side effects.

“I was concerned early on that the levodopa drug I was taking was tending to make me very sleepy. In one of my meetings with my nurse I said I didn't want to spend the rest of my life asleep, so my dose was adjusted. 

“Later, I changed to a different levodopa drug with dopamine agonists to assist absorption. In recent months, I have experienced constipation, but I now think I have got that under control. 

“I have noticed in the last year that I definitely have to take my medication at the correct time. I have a reminder on my mobile phone to take a pill. My medication works well as prescribed, but if I don’t take it at the right time I am uncomfortable.” 

Gentle movements

2 years ago, Tony joined his local Parkinson’s UK group and has started Tai Chi classes there. 

“Tai Chi has opened my eyes to actually doing exercise - I probably didn’t do enough,” admits Tony. “We do an hour of exercise and I can replicate some of the moves at home. 

“Some of the very simple ones have helped my symptoms. If my right arm starts jumping around I start doing the exercises. It helps to correct things, and it’s good for the mind as well.” 

Welcoming new people to the group is a real joy for Tony as he explains: “Recently we had 5 new members join the group, which was absolutely wonderful. It’s really encouraging to see them joining in and finding the group helpful - it reminds me of how lucky I am.”

Gratitude

It's been 8 years since Tony received his Parkinson’s diagnosis and he feels well - something he credits with the help and support he received at the very start of his Parkinson’s journey.

“I am still able to enjoy life and this goes back to the original meeting I had with the healthcare professionals where they said it is my Parkinson’s to deal with. This has helped me to live with the condition and not let it dominate.”

Alongside his healthcare team and his local group, Tony is a member of his local parish church, which is a kind and caring community. While he lives alone, Tony’s neighbour is another important part of his support network. 

“I used to live in a 3-bed house, but decided to downsize about 7 years ago. Now I rent a ground floor flat and my good friend lives in the upstairs flat. It's been quite the best thing I could have done. 

“Of course I am learning to acknowledge there are times when I must stop, sit down and let things take their course a bit. But I am very grateful for the help that I have, and the pills that I take. I feel very content.”