What can living with Parkinson's disease tell us about building resilience?

There are many conditions that take us into uncharted territory in our lives. A friend, currently recovering in hospital after an horrendous car accident, is making rapid progress in walking again. There are other types of life-changing conditions too, such as cerebral palsy, cystic fibrosis, insulin-dependent diabetes, multiple sclerosis, and motor neurone disease, to name just a few. One in every 308 people have Parkinson's disease in Australia. In the USA, in a year's time, there will be 930,000 with this condition, more common in men than women. The cause is still not fully understood. Such conditions mean not only facing daily challenges, but also finding reasons to keep on wanting to engage with life. So, what can these people teach us about building resilience?

Parkinson's disease comes with many challenges

Today I speak with Peter, a career psychologist, who was diagnosed with Parkinson's about 11 years ago. In hindsight he can see there were early symptoms – cramping, reduced sense of smell and fatigue for five or six years beforehand, but at the time he thought it was just stress and getting older. Now, after considerable adaption, he has a home-centred life and writes fiction. I asked him about his routine.

"Each day is a little different," he tells me. "I wake up and I'm largely paralysed, until I get the medication, which takes from 30 to 45 minutes to kick in." Then he can talk again, walk, eat, shower and so on: functions most of us don't even think about. And the medication is needed roughly every three hours throughout the day and night.

Even on the medication he has challenges in areas we take for granted: "There's a tremendous amount of concentration involved. Virtually everything I do I have to concentrate on, think of how to do. Even think about - visualise - how many steps I'm going to take. If I don't then my mind forgets to tell my body, my legs, what to do."

"Sometimes I get stuck. Once I was in a car seat and the meds wore off, and I couldn't get out for an hour and a half." He laughs a little, seeing the humour in such situations from the point of view of the fully able.

There is danger here too, that is not at first obvious. Peter tells me that sometimes he needs to lie down when he is not functioning well, and it can be tricky working out how to do this so that he doesn't block his airways. Then he quietly drops a bombshell: "Sometimes I get muscle cramps that tear the fibres, and crack the bones apart."

So far, Peter’s Parkinson's has been inconvenient, frustrating, depressing and occasionally very painful, when muscle spasms in his back, tear fibres and dislocate joints in his lower back. There is the constant risk of falls and small injuries, but for a significant part of each medication cycle, he is relatively free to do what he wishes. And he seems able to come through these trials and keep on going, with kindness, humility and perhaps most impressive of all, a great sense of humour.

I ask him about the resilience he seems to have built, that keeps him engaged with life in many ways, including as a fiction writer.

In spite of all the challenges, I think it (Parkinson's) has some benefits for me personally, but it has been very hard on my wife, and my parents – and my children, who are now independent.”

Peter tells me that the condition has helped him develop the attitude that even though it's difficult, he can do it: "If you get knocked down you can get back up again. Things are hard but they're not impossible. Things are challenging but they're not impossible." And here we narrow in on the topic I am hoping to explore: resilience.

I ask him if he has any advice for others with the condition. He pauses and thinks through an answer: "Don't give up. Certainly, give up things that are risky for you but don't give up on life. It's different for everyone, but as someone said at the shops on finding out I had Parkinson’s, ‘There’s worse things to have!’, and the condition actually seems to have released more of my creativity."

Could the secret to resilience be as simple as this? As simple as finding joy, or at least a deep satisfaction, in simply persisting. And in celebrating the wins, whether they be large or small, that prove to us we are capable of keeping on going through each night and day. To being open to finding a silver lining, not the least of which is enjoying the gift of being alive.

Till next time – B.W. Cribb

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