An interview with Joseph Barrett, Living in the Gray, a Survival Guide to Living with YOPD
Biography
I am a 43 year old, divorced father of three. 10,10,12. I live in New Jersey, and I was diagnosed with young onset Parkinson’s disease at 39 years old. I grew up on the Jersey shore. I’ve played sports my entire life, primarily football, from the age of seven all the way through college. I found running as a great way to work through anxiety and depression, as well as keeping my body in shape. I’ve run several marathons most recently the Boston marathon and I’ve told the line at Moab 240 twice and have run several ultramarathons in between
Can you tell me more about your Advocacy?
For right now, I post on Instagram and TikTok some of my experiences and hopefully some of my helpful tips on living with Parkinson’s. The most recently got 501 C3 designation for my nonprofit organization, Parkinson’s Pace. I hope to raise awareness and funds that will further the understanding of YOPD and help others manage daily of those with our disease
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I realize that the Parkinson’s disease there’s a component of staying strong mentally. I feel like sometimes the disease can be overwhelming and larger than life and this can sidetrack your passions. I’ve always had the passion of helping others and the feeling that I can bring not only to myself, but the people that I help. And from this passion, I’ve decided to start a nonprofit organization that will help others with YOPD primarily through movement and exercise.
What type of training and how long are the programs?
With Parkinson’s pace, I plan on offering training plans for running, but also for getting yourself in shape. Until there’s a cure, the only thing that we can collectively do as Parkinson’s patients is to stay active through exercise. Training plans for running a marathon can be as long as four months. But training plans for daily exercise can just be a weeks’ worth of particular exercises that I feel target some of those core muscle groups that Parkinson’s can deteriorate or focus on.
What effect can your Advocacy have on an individual with Parkinson’s?
Developing a community of like-minded people who are also afflicted by YOPD is key to living successfully with this disease. I joined the Parkinson’s fight club Facebook group after talking with Jamie Bryson. I posted on a Facebook group of runners with Parkinson’s that I was running the Moab 240 and he had text me right away that we needed to be friends. And we’ve been close ever since.
What would you like to see as a future goal for your Advocacy?
I would like to reach as many people as possible. I want the resources and tools that I champion to be easily accessible to all those that have been or will be diagnosed with YOPD
What events do you participate in?
Currently, a lot of my events revolve around running, but I’d like to broaden my horizon to talking and communicating with others on different levels with YOPD.
How does this also assist the caregivers?
I plan on sharing my experiences with relationships and to share that Parkinson’s disease is not the end to finding a partner or strengthening your relationship with your current partner.
Also, caregivers play such a vital role in the success of a patient’s functionality with Parkinson’s it should really be highlighted. I’d like to offer ways that caregivers can get together and work through challenges that they face on a daily basis and also share positive experiences.
How can someone get in touch? What is your website?
Instagram. @ultraperkinsonsdad
How can others also become advocates for awareness?
At some point, you’re gonna have to put yourself out there as far as what you’re dealing with and your diagnosis but at what level of detail is up to you. Once you figure out where you’re comfortable with that you will just have to communicate with as many folks as you can. Whether that’s true social media or through in person groups that can be very helpful.
In your opinion what is the key to effective advocacy?
A clear and concise message that is communicated repeatedly and is consistent.
How can we better fundraise to support a cure for Parkinson’s?
I think it’ll really comes down to communication and spreading the message that we are on search for Cure. I don’t think that we lack communication. I just think that more communication generally is a great approach.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Daily exercises number one and should be number one for those that have Parkinson’s. I do take a large amount of vitamins and minerals that I feel have been helpful to saving off some of the Parkinson’s symptoms. I also find meditation to be extremely helpful. Journaling is a great way of getting your thoughts down on paper and out of your head. When you get those thoughts on paper, you can visualize some of your strengths and weaknesses and develop a plan to continue with those strengths and then develop your weaknesses.
Why should people who don’t have Parkinson’s care about this?
I think that neurodegenerative diseases are on the rise and that many if not, all people will be touched by or know someone who has a name for degenerative disease. Advancements in treatment of Parkinson’s will overflow into many other similar disease states.
Have you had any family members or relatives affected by Parkinson’s disease?
Thankfully, no I’m the only person in my family that has been diagnosed with Parkinson’s.
If you had one song that would tell us more about you or represent your life, which song would it be?
My favorite song in the world is Thunder Road by Bruce Springsteen. It reminds me of growing up and also is a sense of humility in the song. And I think I tried to lead with hope in humility with everything I do.
What are your social media tags?
Instagram/Tiktok @ultraparkinsonsdad
If you had one final statement or quote you could leave for the Parkinson’s community, what would it
Keep fighting. You are not your diagnosis.
TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George