## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [My PD Story](/living-with-parkinsons/stories) ## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [My PD Story](/living-with-parkinsons/stories) # My PD Story ![Jordan and his dad](/sites/default/files/styles/470x550/public/images/jordan-levin-pd-story-hero.jpg?h=c9aea1bc&itok=3wiYg7bR) Care Partners ## Jordan Levin My Parkinson’s story is told from the perspective of a [caregiver](/resources-support/carepartners "For Care Partners") — and, in a sense, from two of them. ![Stephen and Judy Levin](/sites/default/files/styles/380x361/public/images/jordan-levin-pd-story-float1.jpg?itok=b4AQ5vYx) I help care for my father, Stephen Levin, who was diagnosed with Parkinson’s disease (PD) more than 10 years ago and, more recently, with dementia. At the same time, I support my mother, Judy Levin, who is his primary caregiver. In other words, I am both a caregiver and a “caregiver to the caregiver.” That distinction matters, because the people we so easily overlook are often the caregivers themselves — frequently long-standing spouses — who quietly need and deserve support of their own. My father’s condition had been declining gradually, with mild [dementia](/blog/awareness/dementia-conversation "PD Dementia: An Important Conversation") emerging around 2023. But nothing prepared us for the sudden sea change in early 2025, triggered by a viral illness we later learned can wreak havoc on people with PD. Almost overnight, our lives were thrown into a tailspin: hospitalization, a stay in a rehabilitation facility, and ultimately full-time in-home caregivers, along with two separate moves to accommodate his needs. We were unprepared and uneducated about what to expect, forced to move quickly and make weighty decisions with imperfect information. ![Jordan and his mom](/sites/default/files/styles/380x361/public/images/jordan-levin-pd-story-float2.jpg?itok=E9nQV0tn) As much as this care was about improving my father’s quality of life, it was equally about my mother — her mental well-being, her sense of balance, and her access to support groups and community. We managed through sheer grit, relentless networking, and the pooled time and love of a close-knit family and an extended circle of friends. > The stress on a caregiver is real and deep, and the physical and mental toll cannot be underestimated. ![Jordan with his family](/sites/default/files/styles/380x361/public/images/jordan-levin-pd-story-float3.jpg?itok=jyc6peXu) Caregivers absorb a flood of information — some of it conflicting — while consulting doctors and specialists, taking on responsibilities a partner once handled (including bills, household finances and more), welcoming new people into their lives, and often juggling jobs and other family obligations at the same time. This is exactly where more resources, and more recognition, are so badly needed. This cause is personal. There is a history of neurological conditions on my father’s side of the family, including both Parkinson’s and various forms of dementia, and several friends and their loved ones are walking this same road. I believe deeply in [medical research](/advancing-research/join-study "Join A Study") — and just as deeply in the power of [daily movement](/living-with-parkinsons/treatment/exercise "Exercise") and a healthy lifestyle to help prevent or blunt the onset of neurological disease. ![Jen, Rock, and Jordan](/sites/default/files/styles/380x361/public/images/jen-rocky-pontikes-pd-story-float2.jpg?itok=PhPFYKhq) That belief led my friends Jen and Rocky Pontikes and me to create the Million Meter Challenge, a month-long rowing event we completed as [Parkinson’s Campions](/how-to-help/fundraise/create-fundraiser "Create Your Own Fundraiser"), with the Parkinson’s Foundation. The event was about teamwork, movement and showing up — and together we raised awareness and funds for Parkinson’s. My hope is simple: to support the research and education that may one day cure or ease these brutal diseases, and to ensure that caregivers are never left without the information, resources and support they need on their own journey. **Jordan is a recipient of the Parkinson’s Foundation Top Fundraisers Award. Learn how you can become a** [Parkinson’s Champion](/how-to-help/fundraise/create-fundraiser "Create Your Own Fundraiser") **today.** ## Related Materials Books ### [ Caring & Coping: A Care Partner’s Guide to Parkinson’s Disease ](/library/books/caring-coping) [Read Now](/library/books/caring-coping) Podcasts ### [ Episode 129: Using the New Parkinson’s Exercise Recommendations as Part of Your Treatment Plan ](/library/podcast/129) [Listen Now](/library/podcast/129) Podcasts ### [ Episode 116: Caring for Loved Ones with Parkinson’s Disease ](/library/podcast/116) [Listen Now](/library/podcast/116) ## More Stories from the Parkinson's community ![Kimberly O’Roark headshot](/sites/default/files/styles/340x400/public/images/Kimberly-ORoark-pd-story-hero.jpg?h=c9aea1bc&itok=3GKsm-4c) Care Partners ### [ Kimberly O’Roark ](/living-with-parkinsons/stories/kimberly-oroark) READ NOW ![Christine and her dad at a baseball game](/sites/default/files/styles/340x400/public/images/christine-rowley-pd-story-preview.jpg?h=c9aea1bc&itok=vGc6e0Op) Care Partners ### [ Christine Rowley ](/living-with-parkinsons/stories/christine-rowley) READ NOW ![Nancy and her husband outside](/sites/default/files/styles/340x400/public/images/nancy-carstens-pd-story-preview.jpg?h=c9aea1bc&itok=u3cZ7na7) Care Partners ### [ Nancy Carstens ](/living-with-parkinsons/stories/nancy-carstens) READ NOW [VIEW ALL STORIES](/living-with-parkinsons/stories) ### Share your Story Do you have an experience with Parkinson's that you would like to share? [SUBMIT YOUR STORY](/living-with-parkinsons/my-pd-story/submit) ### Care Partner Resources Explore all stages of the care partner journey and practical tips that can help along the way. [LEARN MORE](https://www.parkinson.org/resources-support/carepartners/resources) - Share on Facebook - Share on X - Share on LinkedIn