PARKINSONZ ACEs

Adapt, Conquer, Empower Others

Meet Steve Squires

In the year 2000, at just 24 years old, Steve Squires from Middlebury, Indiana was diagnosed with Parkinson’s disease in 2000 at the age of 24. “At first, I was petrified,” Steve recalls. With a newborn son and a life just beginning, the diagnosis felt like a heavy weight pressing down on him. The fear of an uncertain future and the impact on his family were overwhelming.

Building a Support System and Advocacy

Despite the initial shock, Steve found strength in the support of his wife and family. Their encouragement played a crucial role in keeping his spirits up. Getting involved with organizations like Team Fox and the Parkinson’s Foundation connected him with a community of inspirational individuals facing similar challenges. “My wife and family have been a major help in keeping me positive,” Steve shares. This support system inspired him to become an advocate for a cure and to raise public awareness about Parkinson’s. With extensive support from his family and friends, Steve has helped raise over $100,000 for research since 2016.

Embracing a New Future

Initially, Steve struggled with doubt and depression, questioning how his life would unfold differently from others. However, participating in various PD groups, both online and in person, helped him plan for the future with a new perspective. “I realize that I will be different from people in good health, but I no longer feel the need to hide the disease,” he explains. Embracing Parkinson’s as part of who he is has empowered Steve to live authentically. He continues to pursue his passions, such as cycling, bowling, and golfing, which he once thought he would have to give up. Discovering recumbent trikes has allowed him to keep cycling, sometimes even tackling 40-mile rides in good weather.

Finding Hope with MRI-Guided Ultrasound

In the summer of 2015, Steve Squires watched a video from Israel about an experimental MRI-guided focused ultrasound treatment for Parkinson’s Disease. He was already eligible for Deep Brain Stimulation (DBS) but was worried about the risks of having a device permanently implanted and holes drilled in his skull. Determined to find a less invasive option, Steve searched for similar treatments in North America. He found a few trials in the USA and Canada and decided to apply to the University of Maryland. By late August, he was asked to send videos showing his symptoms with and without medication. After several visits and meeting all the study requirements, Steve underwent the ultrasound procedure on November 15, 2015. The results were amazing—he was able to run to his family and even jog backwards right after the treatment, bringing tears to the eyes of his loved ones who watched him. Although the technology offers the chance for more treatments and confirmed that DBS was still an option, Steve chose not to go for it. He saw other patients having complications and preferred to stay active through exercise to manage his Parkinson’s. Even in the cold months, Steve continues to stay active, showing his strong determination and positive attitude. You can see before and after videos of Steve of the MRI Guided Ultrasound

Moving Forward with Hope

Steve’s journey hasn’t been without its challenges. Learning to ask for help with tasks he once did independently was one of the most difficult things he had to overcome. “It’s hard to let go of pride and accept assistance,” he admits. However, leaning on those around him has been essential in managing his condition. His motto, “If you stop moving, you WILL stop moving,” highlights the importance of staying active. Exercise not only slows the progression of PD but also provides Steve with a sense of purpose and strength. Looking ahead, Steve is sponsored by TerraTrike and aims to ride a century (100-mile continuous ride) in 2025. He plans to embark on long rides across Indiana, Michigan, and possibly other states, while also helping others with PD discover the benefits of triking.

Steve is most grateful for his wife and son, acknowledging the sacrifices his family has made. “My son has never seen me ‘normal,’ but maybe that’s better so he doesn’t see what I used to be capable of before my life changed,” he reflects. Raising his son to be the best he can be remains one of his proudest accomplishments.

Steve Squires’ story is a testament to resilience and determination. Whether he’s cycling up a hill, bowling a strike, or pushing through a long ride, Steve shows that with the right mindset and support, it’s possible to live a fulfilling life despite the challenges of Parkinson’s disease. “I’m just out here living my best life, not letting anything hold me back,” he says. His journey serves as a powerful reminder that every step forward is a step toward strength, hope, and new possibilities.

The Questions

What helped set you on a positive trajectory?

My wife and family have been a major help in keeping positive. Also getting involved with Team Fox and the Parkinson’s Foundation have led me to a number of inspirational people as well.

All of this has led to me becoming an advocate for a cure and raising awareness to the public about Parkinson’s.

Well at first there was a lot of doubt and depression, but after getting involved with numerous PD groups both online and in person has really helped me plan. I realize that I will be different from people in good health but I no longer feel the need to try and hide the disease but rather to embrace it as part of who I am today and tomorrow.

My motto is “if you stop moving, you WILL stop moving.” You must exercise and take care of the physical side of life even more than in the past. Now is the time to exercise and take your health seriously.

Exercise slows progression of PD so take advantage of every opportunity.

Also, don’t compare yourself to anyone. The disease affects every person a little differently.

We are like snowflakes, from a distance we all look the same but up close there are distinct differences.

Don’t give up what you enjoy and learn to adapt. This past year I thought I would have to give up cycling but have since discovered recumbent trikes and in good weather ride as much as possible, sometimes even 40 miles in a ride.

My wife and son. I know my wife didn’t sign up for this and I’ve told her many times she got the short end of the stick when we said” For richer and poorer, in sickness and in health.

She had no idea that within 3-4 years of us being married I would develop PD. My son has never seen me “normal”. I guess it might be better that way so he doesn’t see what abilities I used to have before my life changed.

Raising my son to be the best he could be and he is definitely doing that. Still cycling, bowling, and golfing which I thought would probably have ended years ago but hasn’t.

I am now sponsored by TerraTrike which is a trike company out of Grand Rapids, Michigan. I want to ride a century (100 mile continuous ride) in 2025. We might do a long ride covering Indiana, Michigan and possibly some other states. Also helping others with PD to get on a trike and try it out. It just might save their life.

I am very proud that our branch of Team Fox has raised over $100,000 for research since 2016.

I have been on Amantadine and Carbolevadopa for almost my entire time. I have tried Mirapex and Requip but had some compulsive behavior issues. I also use Imbreja for unforeseen “off” times.

Knowing others are watching me(especially those with PD). I get told that I am an inspiration and a role model frequently and I feel that I need to try to continue to live up to those standards since I am being watched, plus it helps keep me moving.

Learning to ask for help doing some tasks. It’s hard to suck up your pride and ask for assistance on something you have always independently
done. Sometimes you need to lean on those around you and accept their help.