"I am accepting of the future" - Steve's story
After he retired, Steve’s medical experience told him that the tremor he had developed was likely to be Parkinson’s.
Almost a decade on, he shares how he has gone from despair to acceptance, and from doctor to patient.
“I had my suspicions,” says Steve when he remembers the twitch in his arm, which he couldn’t explain. By the time he saw his GP, he had developed a tremor.
As a retired hospital consultant, Steve had treated patients with Parkinson’s, so was aware of the condition. “I told her I believed I had Parkinson’s and she referred me to the Parkinson’s clinic.”
Even though he had a good idea of what was coming, when he received a Parkinson’s diagnosis, it bought mixed emotions.
“It’s difficult to explain,” says Steve. “I didn’t want to believe it. I felt upset and I was angry - why me? Why not somebody else?”
Once I actually came to terms with Parkinson’s...I manage in the world a bit better.
"I have come round..."
“Looking back to when I was diagnosed, there was despair at the beginning. Gradually though, I have come round and have accepted that I’ve got Parkinson’s and no amount of time is going to change that.”
To begin with, Steve would go out of his way to hide his tremor. Sometimes he would stuff his hand in his pocket if he was going out. “It was as if I was ashamed to have such a weakness,” he admits.
“Once I actually came to terms with Parkinson’s though, I manage in the world a bit better. Although, I do time things when my medication is working so I’m at my best.”
There are still challenges. “A delivery guy came to the house and noticed my tremor. I explained I had Parkinson’s and he said, ‘Poor you’,” remembers Steve. “I still get very angry if people pity me.”
He has also had to navigate the switch from being a doctor to a patient. “I know it’s best for me to be a patient, not the doctor and to take the advice and listen to the team who work with Parkinson’s all the time.
“But it’s been very difficult to go from offering guidance and managing a patient’s care to being managed.”
Lost loves
While Steve has reached a place of acceptance, Parkinson’s has left its impact.
“Before I was diagnosed, I always enjoyed sport,” he says. “I used to teach judo for many years. The 3 pillars of judo though - speed, strength and balance - have all been affected by Parkinson’s.
“It brought home to me just how much I missed judo when my grandson took it up. I was longing to get up and join him.”
Being active can help manage Parkinson’s symptoms, but Steve has found it isn’t always so simple. “Any significant kind of exercise sets my tremor off. But I still enjoy gardening and I have a walking machine at home I use.” .
For me, making an advance decision is the only way to effectively manage the unknown.
Managing the unknown
When Steve was first diagnosed, he went to the appointment with his wife. Neither shied away from asking the big questions including life expectancy and the risks of developing dementia.
“It’s difficult to manage the unknown,” he concedes. “But so is the risk of being knocked down by a car and people don’t avoid going out because of that.”
One way Steve has decided to do this is to make an advance decision while he is well. An advance decision can be used to explain to others which medical treatments you would accept or refuse under certain circumstances.
“When I was working in Intensive Care, we would often ask relatives if their loved one had an advance decision or living will in place, but few patients ever did. For me, making an advance decision is the only way to effectively manage the unknown.”
“I don’t believe in fate but I am accepting of the future - if that’s what is going to happen, it’s going to happen.”