An interview with Ian O’Brien on Advocacy on October 12, 2023 by George Ackerman, Ph.D, J.D.
Biography
Married to Caroline and Dad to my two young girls, Hazel (6) and Clara (9)
Live in Waterford in the South East of Ireland
Diagnosed with Parkinson’s in 2018 (aged 38)
Decided to retire from work, sold my share in my motor business.
Amateur Adventurer, Soccer fan, Regular exerciser and Parkinson’s Advocate
Please tell me a little about your background and what got you involved with awareness.
I was diagnosed with Parkinson’s nearly six years ago now. I was lucky to meet others at the time who were also young and living with Parkinson’s. Meeting and talking to them was better than any medication I was taking or any advice the Neurologist had given me. I knew I wanted to be like them and be there for the next young person diagnosed with Parkinson’s disease. So that’s my goal.
Can you tell me more about your advocacy?
Stupidly, after my diagnosis I googled “Parkinson’s”. The results were pretty gloomy, and the visuals were all of older people, at more advanced stages. This wasn’t me nor was I going to be put in this category, so I try to do the complete opposite. I try to do things that individuals without Parkinson’s would find difficult. I hope this in turn gives hope, optimism and encouragement to others living with Parkinson’s.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I have always been a passionate person. I have strong opinions. I knew the day I was diagnosed that I was going to try and make a difference. I got involved with a young Parkinson’s group and eventually went on, with others, to form a dedicated charity focusing on providing support to those living with young onset Parkinson’s here in Ireland. EOPD (Early Onset Parkinson’s Disease Ireland)
What type of goals do individuals with Parkinson’s awareness have when working with you?
My friend always jokes. He says “..when a friend asks you to help them with something, you try your best to. When someone with Parkinson’s asks you to help them, you just do it!”
Anyone I’ve asked to help with my work has been fantastic. They are always keen to help me achieve my goals. Most people know someone else who has Parkinson’s so there is a connection there. They see my passion, and my goal becomes their goal also.
What effect can your advocacy have on an individual with Parkinson’s awareness?
Get people talking. That’s it. The more people talk about Parkinsons, the greater the awareness becomes and hopefully a chain of events begins that leads to a cure.
What would you like to see as a future goal for your advocacy?
There is a lot of individuals out there, especially younger, living with Parkinson’s Disease in silence. They have not shared their diagnosis with family or friends and are struggling to hide it, for their own reasons. I want to reach those people, talk to them and encourage them to talk to others. I want them to start living their best with Parkinson’s and not a life trying to hide it.
What events do you participate in?
I enjoy the adventure and physical endurance events. I hope by showing others that I am still competing and pushing my body to limits that they can try something suitable for them too.
Meeting others and talking at organized events is a great platform to develop ideas and I think it is vital for advocacy.
How does this also assist the caregivers?
Caregivers are an extension of the individual living with Parkinson’s. They are amazing people and the best people you could have in your corner when advocating. They deserve an equal voice, as they speak for themselves and often the person living with Parkinson’s also.
Again, opening the conversation, pushing awareness, and being heard is what we as the Parkinson’s community want.
How can someone get in touch? What is your website?
My recent adventure in Europe is documented at www.eurupian.com
There is a contact page there that will reach me.
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
“Inspire yourself, you’ll inspire others”