00:00Jenny Merigaya has good days and bad.
00:06When I'm off, I can't walk, I can't stand.
00:13The Keen Cook was diagnosed in 2016 with Parkinson's disease,
00:17a neurodegenerative disorder that affects movement.
00:21Jenny watched the same disease take its toll on her father,
00:25but still the diagnosis came as a shock.
00:29I still get teary. Mind you, that's Parkinson's as well.
00:33You cry very easily and I just couldn't believe it.
00:36Jenny's symptoms are getting worse and the medication she takes
00:40is slowly losing its efficacy, but she lives independently
00:44and wants to keep it that way.
00:46At the moment I'm reasonably okay, but I won't be down the track.
00:53I will need additional support and assistance if I want to stay
00:58in my own home as independently as I can.
01:02That's why Jenny has joined the chorus of Parkinson's ACT volunteers
01:07campaigning for a specialist nurse who can care for them at home.
01:10Well, the volunteers with Parkinson's ACT have been pushing for at least 10 years.
01:15Marcia Kimball has been at the forefront of that community campaign,
01:19inspired by this man, her husband John.
01:22John was diagnosed in 2008 with Parkinson's.
01:26The disease progressed slowly with John moving into residential care three years ago.
01:32Marcia can't help but wonder whether a community nurse could have helped him stay at home with her for longer.
01:39Nurses can advise on medications, symptoms management,
01:43counselling for family and carers, referral paths in the health system,
01:48and can help people keep people in their home because the Parkinson's journey is a long one.
01:56The ACT is the only Australian jurisdiction without a community-based Parkinson's nurse.
02:02South Australia has five.
02:04Health Minister Rachel Stephen-Smith promised to hire one ahead of last year's election
02:09to work out of the Brindabella Day Service at the University of Canberra Hospital.
02:14She told the ABC she has every intention of making good on that promise.
02:19Canberra Health Services is working to set up that model to ensure that we get it right,
02:24and that means working with the community as well
02:26and recruiting the appropriate advanced practice nurse to undertake that work.
02:31What is lacking, though, is a timeline.
02:34How does that make you feel?
02:37Discriminated against.
02:39And so the wait continues.
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