Ms Mary Casserly:

I thank the Senator for her comments. She asked about raising awareness. I spent many years thinking I had fibromyalgia and going to different physiotherapists. Like Ms Ulpe, when I eventually got my diagnosis, it was a relief to know I was not going mad and to have an answer as to what was wrong with me. There needs to be more awareness raising around disabilities and the fact that some of them are hidden. I sometimes feel we are like swans, looking calm on top but with hell going on at times underneath.

Financial assistance is an issue I want to highlight. Some people find it very stressful to fill out the forms, and stress and Parkinson's disease do not go well together. Why make it so complicated when people are in genuine need? In the case of housing adaptation grants, for example, it can take more than a year for people to get funding to make their home more suitable for them. Parkinson's disease is a progressive condition that is not going to go away any time soon. We are praying for a cure but there is none at the moment. Why put people trough so much stress and turmoil? A woman I know has an upstairs bathroom and has to get in the bathtub to have a shower. She lives on her own and could fall. We are hearing those sorts of things every day. Why make it so hard for people? Fighting for help is putting stress on people who are already coping with this condition. I do not think it is fair.

We need to have services and therapies available locally and we need more neurologists and nurses who specialise in Parkinson's disease. We need to have that care in between our yearly appointments. People go on medication, have side effects and are left wondering what is normal and if the side effects will calm down. Parkinson's disease is complex and we need to have a backup system whereby people can pick up the telephone and ask somebody what they should do, including whether they should tweak their medication, take it at different times or whatever else. We need that information but, unfortunately, it is not there at the moment. I thank the committee for listening to me.