Carole’s story about life with Parkinson’s disease

By August 15, 2014 May 17th, 2018 Member's stories

Alan and Carole | Sports Super Centre

I was diagnosed with PD in 2000 and have progressed fairly slowly over the years. The most annoying part is that no 2 people have the same symptoms, making it difficult to know what is going to happen next. They do not know what causes it so therefore there is no cure.

Parkinson’s Disease (PD) is a chronic,progressive, incurable, complex and disabling neurological condition which is characterised by both motor (movement) and non-motor symptoms. It is the second most common degenerative neurological condition in Australia – affecting up to 80,000 Australians. An estimated 17,000 of them live in Queenslands. There are nearly 30 new cases of PD diagnosed every day in Australia. PD can occur at any age.

In 2013 I had a brain operation which involved having a wire attached that sends pulses to the brain.This has been quite successful as I am on very low medication and no longer shake, which is a hallmark of the available treatments. The thing that annoys me the most is that I am now very slow at walking, which I find frustrating. However, I have a wonderful husband who drags me along for these walks.

I was typical of my era where one looked after the house and children while hubby went to work, thus Alan was very spoilt when it came to doing things around the house. But in the last few years he has learnt a lot and tries very hard to help, especially as I spent two months in hospital earlier this year and everything fell on his shoulders.

Alan and I run a support group at Helensvale for people who suffer from PD but the worst part is the number of people out there who suffer from this disease but live in denial. These seem to be mostly men. Because it is so diverse, every month there are changes occurring in people’s symptoms. Having PD isn’t a death sentence it just makes life difficult. Little things like putting on socks & shoes, getting off toilets – all toilets should have rails not just disabled toilets. Some people get dystonia, which causes them to “freeze” or not be able to move. Others, like me, get shakey and have tremors.

So, if you know anyone who has PD tell them to go to a support group as this is a wonderful way to get to learn about PD – things like what is happening in research, medications, neurologists and more.