Shake It Up Hero – Ian Read
Friday, 28th June 2013

Ian Read is our Hero for his participation in Parkinson’s Clinical trails here in Australia. People like Ian play a HUGE role in finding the cure for Parkinson’s disease and for that we will always be thankful.

Did you know that fewer than 10% of Parkinson’s patients ever take part in trials, despite overwhelming interest in working with scientists to help speed treatment breakthroughs? Hear why Ian decided to become involved.

How did you hear about the clinical trials?

I had been referred to Dr Carolyn Orr at Macquarie University Hospital Neurology Dept by my doctor as he suspected Parkinson’s Disease.  In the Neurology Dept there were posters on the wall and fliers promoting MJFF PPMI.  I was not aware of PPMI before that time.  I read the leaflets and took one home to think about.  When I was diagnosed I asked if I would be a suitable candidate and it went from there.

What made you decided to become involved?

I did not want to be a victim of PD.  When I was diagnosed I felt a bit helpless and wanted to do something that would help fight back.

What would you tell other people that were interested in participating in a clinical trial?

Initially, I was in shock and a bit of denial.

Don’t give in to the feeling that you can’t do anything to fight the inevitable progression of PD.  Volunteering for a trial has given me a sense of purpose and worth and really helps bring forward the date that a cure will be found.  By volunteering for a trial you are helping yourself as well as others.

What has been the biggest challenge?

I was concerned about the lumbar puncture that is part of the testing but in reality it was nowhere as bad as I had made it out to be in my head.  My image was based on bad TV hospital dramas.  The reality is that in a trial you get the best care from the best clinicians. It was not an issue.

Also friends questioned why I would want to subject myself to a trial.  Whilst they were trying to protect and comfort me, they were actually not helping me help myself.  I had to justify why I wanted to participate in a trial, which made participation more of a challenge.

What has been the biggest reward?

The feeling that I am doing something to help bring forward the date when PD is cured.  I may have PD but PD does not have me.

Any Advice?

Be a bit brave.  Own up to having PD and do something positive to help yourself and others.  Together it can be beaten