Your Experience

1. My Experience Your Experience Pope John Paul II Sir Joh Bjelke- Petersen Michael J Fox Muhammad Ali 1

2. What is Parkinson’s Disease? • A degenerative brain disorder affecting movement • Symptoms caused by the deficiency of a chemical in the brain called Dopamine; why it happens, nobody knows • Not fatal but progressive and incurable and, with time, severely affects quality of life • Currently there is no one specific test to diagnose Parkinson’s Disease – diagnosis is a combination of symptoms exhibited and eliminating other possible causes 2

3. Symptoms of Parkinson’s Disease Tremor (shaking usually starts on one side of the body, often in the hand or finger) Rigidity (stiffness where the limbs feel like lead) Akinesia (difficulty in initiating movement and slowness of movement) Problems with balance 3

4. Facts about Parkinson’s Disease • Approx. 80,000 people in Australia live with Parkinson’s Disease • In Australia alone, estimated cost to the community is A$6 billion annually • It can last up to 50% of your life • It is the next most common brain disease after Alzheimer’s disease • There is no remission with Parkinson’s Disease • Even with medicines, symptoms vary in incidence, severity and timing from person to person, day to day, hour to hour – the disease is totally unpredictable 4

5. Facts about Parkinson’s Disease cont • Medicines effective for only a limited period. They then become less effective or cause disabling side-effects • Stress intensifies symptoms and counteracts the benefit of medicines • People also often suffer from depression, severe anxiety and emotional turmoil • Even with severe symptoms, there is little impairment to the intellect • Environmental and genetic factors may play a part in the development of Parkinson’s Disease 5

6. Myths about Parkinson’s Disease • Myth:Only old people get Parkinson’s Disease • Myth:The only thing that people with Parkinson’s have is shaking • Myth:People with Parkinson’s are unemotional and not feeling • Myth:People with Parkinson’s are “not the full quid” • Myth:Only the person with Parkinson’s is affected by the disease 6

7. Far-reaching Impact of Parkinson’s Disease • Carers: depression, financial stress, strained relationships, frustration, anger, change in roles, changed plans for the future • Families:sense of helplessness, financial stress, change in roles, frustration, resentment • Community: loss of social capital, increased healthcare costs, increased social benefits, loss of productivity 7

8. Treatment of Parkinson’s Disease • Medicines - Can control symptoms effectively for 5 to10 years in most people before disabling side-effects appear and control then becomes less effective • Surgery - Deep Brain Stimulation (DBS) is an alternative to earlier forms of surgery where lesions are cut in the area of the brain that controls fine movement of the limbs to stop shaking • Even if surgery is successful, it only relieves symptoms for a period of time; it does not halt progression of the disease 8

9. represents: • HOPE & STRENGTH • TWO SIDES OF THE BRAIN • STURDINESS • ALL-EMBRACING Towards Understanding Learning Improving Parkinson’s 9

10. Parkinson’s Australia –AJoint Activity with all States and Territories • Lobbies government Alzheimer’s Disease $4.2million (160,000 patients) $262.50 Multiple Sclerosis $14 million (15,000 patients) $933.33 Parkinson’s Disease $ 225,000 (80,000 patients) $ 2.81 • Generates support from companies • Promotes community understanding • Parkinson’s Australia Magazine • Website: www.parkinsons.org.au 10

11. State and Territory Parkinson’s Affiliates • Provide Further Support via • Local Support Groups for People Living With Parkinson’s • resource materials eg videos and books • 1800 Information service • Parkinson’s Australia coordinates the activities of State and Territory affiliates 11

12. How Can We Make a Difference ? Understanding Membership Support It’s Easy BeUnited Is Required 12