An interview with Julie Fitzgerald on Advocacy on July 13, 2023 by George Ackerman, Ph.D, J.D.
Biography
I noticed tremors in my right hand and leg when I was only 36. After seeing multiple specialists, I was finally diagnosed with Young Onset Parkinson’s in 2013. I had Deep Brain Stimulation Surgery (DBS) at the end of 2013, not long after my diagnosis. This is not typical, but my Movement Disorder Specialist recommended it due to the severity of my symptoms and lack of response to medication.
Despite, Parkinson’s refusal to leave me alone, I am still the same Julie. I always have been, for better or worse. I may not be able to do some things and tasks as before and some things I do at a slower speed; but there are still plenty of things that I can do and have planned for my future. I’ve learned to ask for help and my son and his family live with me to help me with some of the daily challenges I face. I also have a service dog, appropriately named Hope.
In July of 2019, I really stepped out of my comfort zone. I joined a group of 11 other Parkinson’s and Alzheimer’s advocates on a 9-day, 120-mile pilgrimage hike across Sicily. We averaged 17 miles a day in temperatures ranging from 110-115 and high humidity. We encouraged one another, waited for those who fell a bit behind, cheered each other on, and even danced and sang. As I hiked along steep inclines, I kept chanting “never, ever, ever give up!”
This adventure was something I never would’ve dreamed or imagined I could do. It was a life changing experience and one I will cherish forever. I’ve proven to myself that despite my limitations, I could do what I previously thought was impossible. I don’t let Parkinson’s define who I am. I discovered when I looked past Parkinson’s there is plenty of life left to live. More importantly, I found out I liked this “new” Julie.
I am a firm believer that education is key in raising awareness and help to persuade others, changes can be made to make living with Parkinson’s easier. The average person doesn’t know much about Parkinson’s. The common misperception is it Parkinson’s is an old person’s disease and so you have tremors…big deal. Physicians and nurses need to be educated in how to treat patients in the hospital with Parkinson’s. It amazes me how many people I meet that are living with Parkinson’s but don’t know much about it e.g., how, and when to take their medications, what foods to avoid, the benefits of exercise, non-motor symptoms as well as treatment and DBS, etc. If some of us living with Parkinson’s don’t know enough about Parkinson’s, how can we expect the average person to understand?
I have been an ambassador with the Davis Phinney Foundation since 2018. I love working with others who have Parkinson’s to help them navigate their journey with Parkinson’s. It is my way of paying it forward if you will. My goal as a Davis Phinney ambassador is to make our voices heard and shake things up (no pun intended!). I frequently visit legislators and encourage them to think outside the box. I participate in clinical research trials whenever I can to do my part in helping to find a cure. I am also a Michael J Fox Public Policy Advocate and an Ambassador for Drive Towards A Cure.
I will fight for you and for me.
Please tell me a little about your background and what got you involved with awareness.
I became involved with awareness when I realized it was up to me to make my voice heard. I found a mentor (John Humphreys) and asked him to guide me and teach me how to advocate for Parkinson’s and to raise awareness.
Can you tell me more about your advocacy?
I worked with the several members of the Texas Legislature in 2019 to help write and get House Resolution 1078 passed. A group of advocates and myself were invited to be on the house dais during the reading and voting to approve the resolution. Afterwards, we were invited for a private meeting with several legislators, including the Speaker of the House and his brother a fellow legislator, whose father had Parkinson’s. We each had ample time to tell our stories and to explain what we the Parkinson’s community needs from our legislators.
I have participated in the Policy Forum in Washington D.C. representing the MJFF and met with our federal legislators and/or their staff.
I write a lot of letters to my state and federal legislators and meet with them periodically to stress the importance of continued funding for research and benefits to make the burden of living with Parkinson’s a little lighter.
I was co-team captain for Team d’ohpamine for the Unity Walk in 2019 in NYC. Collectively, our team raised nearly $13,000 and we were featured in Unity Walk Newsletter Champs in July 2019.
I participated in the 2019 Pilgrimage to Enlightenment hike across Sicily organized by Enzo Simone. Details are in my bio.
I attended the WPC 2023 in Barcelona and made many valuable connections and met FB friends who I hadn’t met face to face. The information at the WPC was invaluable and the friendships with last a lifetime.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is to pay it forward. Someone reached down my hand and helped me to stop having a pity party and taught me how to get involved. My goal is to teach others how they can advocate for themselves and get involved in advocating for their community.
What type of goals do individuals with Parkinson’s awareness have when working with you?
Educate others about Parkinson’s, the financial burden’s we face, the effect it has on our families and how much it costs the government. A cure needs to be found now. 200 years later, we have not made enough progress towards a cure.
What effect can your advocacy have on an individual with Parkinson’s awareness?
I look at it this way, I plant a seed of advocacy and I encourage others to get involved to make their voices heard. It is the only way we will make a difference. I may not always see the seed grow and blossom, but I have done my job in planting and encouraging the seed of advocacy to grow and to help support individuals along the way.
What would you like to see as a future goal for your advocacy?
My dream is to establish a Parkinson’s Community, where people can live together as one community but have their own tiny home or small home. Everyone could share resources, like help with cleaning or rides to the doctor etc. Where one is weak, the other is stronger and together we can lift one another up. This community will have an on-site gym with instructors providing free classes, a community pool, a community garden, onsite nursing or medical staff and community events so we stay engaged. I live alone and I know I am not the only one who struggles with needing assistance, but none is available. Help with simple things, like changing a ceiling light bulb or more seriously helping someone get someone up off the floor.
What events do you participate in?
Board Member of GAPS (Georgetown Area Parkinson’s Support Group) (Texas)
Davis Phinney Foundation Ambassador
Michael J. Fox Foundation Policy Ambassador
Drive Towards a Cure Foundation Ambassador
World Parkinson’s Congress
Unity Walk in NYC
Pilgrimage to Enlightenment Hike across Sicily to raise awareness for Alzheimer’s and Parkinson’s.
How does this also assist the caregivers?
My local support group is very large. We have multiple different support groups within our support group, including a Caregivers Support Group. We need to incorporate practical ways to help Caregivers, not just mental support, although critical but also things like how I get my husband off the floor when he falls. How do I help him/her shower and groom. Practical advice, support, and suggestions.
How can someone get in touch? What is your website?
My email is julie@ctaptexas.org. I don’t have a website, but I do have a FB page entitled Hey PD I’m Still Me. I mostly post encouraging quotes and pictures. I will be starting a blog soon.
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
Never, Ever, Ever Give Up. There is always hope.