Stephanie G Johnson, MSSW

Fitchburg, WI

Stephanie was a care partner for her husband, Rick, who was diagnosed with PD in 2010. For the first many years, Rick embraced exercise and participated in several PD-specific programs: support groups, Big and Loud, LSVT, Parkinson’s Voice Project, and Rock Steady Boxing. However, the pandemic accelerated his disease progression. And, in November of 2022, Rick transitioned to an assisted living community. He continued to see his Rock Steady Boxing trainer for weekly 1:1 sessions. As his disease progressed, Rick transitioned to a residential hospice program. And, sadly, Rick passed away on 12/26/23, surrounded by his family.

Three months after Rick passed away, Stephanie was diagnosed with Parkinson’s disease. She started experiencing tremors during her husband’s transition to assisted living. And the tremors worsened after Rick’s passing. Was it grief? Was it Parkinson’s? Yes and Yes. She has channeled her grief, shock and disbelief into radical self-care and supporting others with Parkinson’s.

Living well with Parkinson’s disease means focusing on and living my values: family, connection, community, compassion. And, asking myself the question, “What’s most important to me right now?”

When my husband was diagnosed in 2010, we received the “Every Victory Counts” binder. I found it so incredibly helpful at the time. And, given my new lens as a PWP, I reached out to the Davis Phinney Foundation for an updated Every Victory Counts book. I read Ambassador profiles on the website, spoke to a few Ambassadors for support, and was inspired to give back. My history as a care partner and now person with PD offers a unique perspective that I hope can help support others.

I enjoy spending time with family, especially my nephews and niece. I volunteer in my community hospital as a NICU cuddler. When I’m not exercising, I like taking walks with my pooch, Lyla. I enjoy reading epic historical novels and watching medical dramas. I love meeting new people. A perfect Sunday depends on the season — in Fall, it’s watching Packers games; in Summer, it’s prairie walks or bike rides.

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