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From Isolation to Advocacy: Caregiver Leslie Peters

In just a few short years, life took several unexpected turns for Leslie Peters. Leslie and her husband, Steve, were busy parenting and working full-time when their lives were touched by Parkinson’s disease (PD) — twice. First, Steve’s mother moved in with the couple to get help managing her advancing Parkinson’s. A few years later, in the wake of his own PD diagnosis, Steve went from working as an executive in the financial sector to applying for social security.

For years, the couple isolated themselves in their home and hearts. Fast forward to this past April when they went to the Colorado capitol to obtain a Governor-issued Parkinson’s Awareness Month decree made possible because of their advocacy.

Before Steve and Leslie evolved into the PD advocates they are today, they went years not telling friends about Steve’s diagnosis. Gradually, Steve became committed to not letting the disease take over his life. Just recently, he underwent deep brain stimulation surgery and the couple decided to simplify life and downsize their home.

They learned a lot about PD when Steve's mother, Mary, moved in with them: "We didn’t know anything about Parkinson’s then, but we quickly learned,” Leslie said.

Soon after Mary passed away, Steve developed a tremor. The couple was shocked to discover that Steve, too, had Parkinson’s. The first support group they attended was not for them: “As a couple with teenage children, it was scary for us to see more advanced PD and envision what our future might hold,” Leslie said.

Luckily, a year later, they found a social group of 40 people with young-onset PD and caregivers who meet over dinner. “We were hesitant at our first dinner, so we just observed.”

Leslie and Steve enjoy the dinners so much that Leslie recently became the group coordinator. She has big plans. Through her participation with the Parkinson’s Foundation, Leslie is more determined than ever to help the newly diagnosed in the Denver area any way she can. Even with a full-time job, she speaks to people new to the Parkinson’s community one-on-one and plans to introduce a support group component for caregivers and people with PD.

The once isolated couple are now PD advocates. Leslie has traveled to Capitol Hill to advocate for research and now Steve is on board. Together, they joined a local Parkinson’s advocacy group.

Then last year, Leslie’s PD awareness efforts led her to apply for the Parkinson’s Foundation People with Parkinson’s Advisory Council (PPAC), where she helps guide foundation programs and resources. Most recently, Leslie has provided her input as a PD caregiver to help improve the foundation’s new website parkinson.org.

At the end of the day, Leslie comes home to Steve in their smaller, one-level home in a community that provides home maintenance. “I didn’t realize how often we were taking care of the house,” Leslie said, "even though I now manage the bills, we have a lot of free time to just do things together.” With their adult children living in their own homes, the couple recently adopted a puppy, Tucker, that giddily walks with Steve. “We love getting together with friends from our social group and do a lot of hiking and exploring,” Leslie said.

Leslie continues to meet with spouses who are new to the world of young-onset Parkinson’s — an opportunity she never found. She tells them to provide their partner with emotional support from the beginning, but to remember that the whole family is going through a huge adjustment. “I know that this disease can be life-changing for caregivers,” Leslie said, "we are often so focused on supporting our loved ones that our own needs go unaddressed. Reach out for help and remember that the Parkinson's Foundation is here to make sure that doesn't happen."

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