To the new Minister for Health, I encourage you to review the costs of Deep Brain Stimulation in order to increase the accessibility of this surgical procedure for sufferers of severe Parkinson’s Disease.
To my friends and family, to other Australians, I encourage you to add your voices to the petition on change.org. I can’t guarantee that it will reach the right people, but hopefully someone will see it and somewhere it will be preserved that there are people out there who care enough to make a difference.
Yesterday I was talking to the CEO of Parkinson’s SA about a cycling fundraiser for Parkinson’s research. She’s keen to give something a go.
How many people out there would be interested in supporting it by riding, sponsoring, volunteering.
Parkinson’s needs more visibility in the community. Sure, it’s not cancer and it doesn’t kill people but its long term, degenerative physical disability and the gap payments for deep brain stimulation can be $14,000 or more.
How many of you know someone with Parkinson’s? That’s right, you probably don’t, because not even 0.3 % of Australia’s population have Parkinson’s.
Because of the high expense of the treatment people have to sell their houses and cars to afford the cost of treatment. These are people who have been paying private health insurance their entire lives. What’s with that?
Something has to change.
Oxford is a lovely town and I have to admit that I’m a little in awe of the University experience that people get when they attend the University of Oxford. My main reason to go there was to visit the Bodleian Library and go on an extended tour of the library. I’m going to be honest and admit that I was a little disappointed with the tour. Perhaps it was because I’m a librarian and have a different perspective..? Unfortunately I wasn’t allowed to take any photos inside the original Bodleian Library, or the Radcliffe Camera.Â I was astonished to discovered that each college has its own library as well! In fact, I just found a list of over 100 Oxford University Libraries and College libraries. If a job swap opportunity ever came up, I’d been keen to live there for 6 months (over summer please :).
Catching up with Sarah, the older sister of a girl I went to high school with, and a Librarian at the Radcliffe Science LibraryÂ was a highlight. Lunch at The Ashmolean Museum was fantastic. Great food and some wonderful exhibits. Talking shop and trading work stories is always great. Sarah’s working on the Oxford University Research ArchiveÂ and wasn’t impressed to hear about Higher Education Research Data Collection codes. I did point her in the direction of the Swinburne repository and CRO.