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Peter’s Story | Parkinson’s disease

10 April 2017

Peter Raymond wasn’t keeping up with the other members of his cricket team; he found himself dosing off at traffic lights in warm weather; and he’d bought an electric toothbrush because he didn’t have the strength to brush his teeth.

Tennis elbow; bad posture as a result of poor ergonomic desk design; arthritis; fatigue – Peter knew he didn’t have any of these, and he wasn’t suffering from ‘old age’ either. But the constant physio appointments he needed to make, coupled with the mountain of anti-inflammatory pills he was taking in an effort to curb his symptoms, signaled to Peter – a man who rarely fell ill – that something was up.

The physio and pills continued for 10 years. Then Peter  visited his GP who asked three seemingly simple questions:

  1. Could he squeeze the doctors hand – not with much pressure;
  2. How neat was his handwriting – it was indecipherable;
  3. Did he swing his arm when he walked? – no.

It took his GP five minutes to diagnose what had been bothering Peter for a decade. It was Parkinson’s disease.

For Peter the diagnosis was a relief – for Peter’s family it signalled a time of adjustment. According to Peter:

“When I told my family you could have heard a pin-drop. It was probably hardest on my son with whom I also played local cricket. It was the first acknowledgement that his dad wasn’t invincible. My wife simply said, ‘Dad is the same person he was before he was diagnosed with Parkinson’s disease.”

“It really came down to that – I was the same person, just a bit slower and my family needed to learn tolerance. I have stopped some things, but have also taken up new activities to replace these. For example, I’ve replaced my cricket and tennis, with indoor soccer and basketball. I became a civil celebrant so I could oversee my daughter’s wedding, and I joined community groups to become President of ‘Parkinson’s Victoria’ and sit on the Board of ‘Parkinson’s Australia’. I’m still active – just in different ways.”

When Peter told his team mates at the local cricket club of the diagnosis, they admitted they had thought something was up but had put it down to ageing. His team had noticed he carried his right arm when he ran and couldn’t take a high catch – two important aspects for Peter as a wicket keeper/batsman.

In the beginning, Peter considered himself in good health, largely unaffected by the symptoms of PD. He remained active, albeit on medication for more than a decade. Over time the medication increased from one pill per day to around14-15 and he experienced dyskinesia. It was at this point Peter raised the option of Deep Brain Stimulation (DBS) with his neurologist.

Peter was considered a ‘good candidate’ and so the journey towards DBS started. In all about two years passed between the time Peter first raised the potential for DBS and his surgery. A point Peter says reinforces his advice to people diagnosed with PD considering DBS; “Don’t wait. Years ago the thinking was to keep DBS up your sleeve, but it shouldn’t be a last resort. I didn’t want to get to 70 and then be told there was something that could have helped.

“For me it is a quality of life issue rather than a health issue. It’s about being able to spend quality time with my five grandsons. It’s about being active in the community and maintaining that sense of self-worth people attribute to giving back either at work, with their families, or through their community groups/clubs. I intend to be around for a long time to see my grand kids grow up.”

Peter is also keen for people to understand that every person’s DBS journey is unique. The key is embracing the journey and enjoying the people you get to know along the way. The decision to have DBS is a serious one, but it should not be feared.

“Right from the start I had a brilliant result. Almost immediately my medications reduced to just one pill a day; I had no dyskinesia; I was getting a good night’s sleep (when I hadn’t slept properly for years) and within four days I was out of hospital at the Parkinson’s Walk in the Park.  Life was good. Two years on – it still is.

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