An interview with Lisa Wynne from the Parkinson’s Association of Ireland on September 12, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background.
I qualified as a general nurse initially, a small diversion & trained as a paediatric nurse where I worked for a few years. Then I came back around to adults and working in the community setting in 2012. I live in Dublin, Ireland with my young family. I am working as a Parkinson’s nurse specialist for Parkinson’s Association Ireland, the national charity.
Can you tell me more about your advocacy?
My role in advocacy is vast. A daily role in advocating for self management & self advocacy for those diagnosed with Parkinson’s, their families. Providing education for all. Passing on knowledge from the day of diagnosis until end of life. Increasing awareness, support and educate…. crucial elements in advocacy.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
A passion for education for all. One focus of mine is to break the stereotypes & myths associated with Parkinson’s and to show there is much more to Parkinson’s than the visible motor symptoms but below the iceberg… the non-motor and huge impact of psychological and psychosocial symptoms. I got involved in the area of Parkinson’s without knowing much about the condition but in at the deep end working as a nurse specialist for a PD complex therapy. I do hold out hope for a cure but while we wait, I hope to increase awareness amongst the general public, health professionals alongside the important people living with Parkinson’s and their family members.
What type of goals do individuals with Parkinson’s have when working with you?
Dependent on the person. Some like to have all the information plus more, others are seeking small nuggets and not too much to overwhelm themselves. An understanding based on their need and assessing their capability to process the information is crucial. You can give all the information but what knowledge do they absorb & digest.
What type of training and how long are the programs?
I developed a newly diagnosed programme focusing on 4 key areas. Knowlegde, Education, Exercise, Support- The KEES toolkit. I feel the most important part is the follow up after completing the course, so nobody feels isolated or alone and has a nurse specialist as a support with any issues that arise. Knowledge = Power!
What effect can your advocacy have on an individual with Parkinson’s?
I am a strong believer in the KEES– I advocate for knowledge to empower people over their symptoms, medication, non pharmacological therapies and research….. all of this information is the tool in self-management & self-advocacy of their condition which encourages one to ask questions and take control over the condition, allowing you to live a life to the fullest without Parkinson’s taking the power.
What would you like to see as a future goal for your advocacy?
A national Parkinson’s health plan. Working with national agencies but also with international agencies to highlight the Parkinson’s pandemic.
What events do you participate in?
National conferences, media campaigns, community clinics for members, increasing awareness for health professionals by facilitating talks, developing literature and booklets for education, strengthening relationships with global associations, clinicians, and charities. National campaigns with neurological associations to lobby for increased services and access to multidisciplinary therapists for those with Parkinson’s. If I can tell people about Parkinson’s…. I take the opportunity!
How does your advocacy also assist the caregivers?
A vital support for caregivers of education and highlighting the journey and change of course their path may take. A confidant for those who are sometimes forgotten. Sometimes husbands, wives but also children and friends who looking for information to help the journey with a Parkinson’s condition.
How can someone get in touch? What is your website?
You can get in touch through our website www.parkinsons.ie or by contacting nurse@parkinsons.ie.
How can others also become advocates for awareness?
Speak out, seek out & support.
In your opinion what is the key to effective advocacy?
Knowledge
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Talk, Tell & travel! The best way to learn is by speaking each other and meeting people from all corners of the world.