Ms Mary Casserly:

On the multidisciplinary approach, what is needed first is an assessment for physiotherapy in order to see what one needs to do to manage this condition. I did not realise how important exercise was and now there is research and education on that. Years ago people were probably told to go home and sit down and that is the worst thing one could do for Parkinson’s disease. Some people think that walking alone is enough, but it is not. There needs to be a wider range of movements in exercise programmes for functions such as getting out of the chair, twisting and turning. Education is needed around that physiotherapy. Community-based exercise programmes specifically for Parkinson’s disease would help to prevent falls and would also have a social element that would connect people. Speech therapy is also so important. Once you start to lose your speech it is hard to get it back so specific speech therapy is needed. There is a programme called LSVT Loud, which is specifically for Parkinson’s disease and everybody should be put onto that programme straight away and they would learn the skills necessary to maintain their voices as they journey through this condition.

Counselling is also important. People are shocked when they get their diagnoses. One could be in the workplace and at the height of one’s career or one could be the main earner in the house and suddenly one might have to give up work. One might have children to put through college and expenses such as a mortgage and it is hard to cope and manage. Anxiety, stress and depression can be symptoms of Parkinson’s disease as well so counselling is overlooked in helping to cope with the disease. There is also occupational therapy and assisted technology. I want to touch on information for employers. If a worker goes to an employer and says that he or she has this condition, we must give the employer the skills to know what to do, what to say and how to help the worker. I know that is getting away from the community question but it is something I wanted to mention to the committee. We need more community involvement and the Sláintecare programme seems to have the right approach in that regard. People need to be kept away from the hospital system for as long as possible and they need to be given the skills to cope with this condition.