Perspectives from Adult Children Who Have a Parent Living with Parkinson’s
Adult Children Shane and Shannon Stutzman Talk about
Having a Father with Parkinson’s
“Don’t go it alone.”
– Shane Stutzman
Learning that your parent has been diagnosed with Parkinson’s isn’t something anyone wants to face. However, if you’re able to focus on the good that comes with it, it is possible to help your parent and all of the others involved live well.
Shane and Shannon’s dad was diagnosed with Parkinson’s when they were well into adulthood. From the get-go, they sought out help, resources and experts to help them deal with the diagnosis and make a plan to help both of their parents navigate this change. Throughout this journey, they’ve raised tens of thousands of dollars for Parkinson’s, attended events all over the country, met and collaborated with countless others living with Parkinson’s and have become even closer as a family than they were before.
In this episode, Shane and Shannon talk about:
- What it was like when their dad was first diagnosed and what it’s like now, 10 years later
- What they did to understand Parkinson’s so they could better help their dad
- How they navigated changing their role from being the ones being cared for to the ones caring for their parents
- The advice they hope will serve as an inspiration to others
- The adventures they’ve had as a family and how Parkinson’s has brought their family even close together
- Get informed and not just through researching on the internet
- One of the best ways to really begin to understand Parkinson’s is to get out in the community and talk to people with Parkinson’s, their care partners, researchers, providers and others who work with people living with Parkinson’s
- Parkinson’s is a progressive disease. If it starts out slowly, it will continue to progress slowly
- Since every person with Parkinson’s experiences it differently, take time to understand how your parent is experiencing it physically, emotionally and mentally and then make a plan for helping them based on what they need
- Just as it isn’t easy to shift into the role of care partner for a parent, it’s not easy for a parent to receive care from one of their children. Ask your parent(s) what kind of role they would like you to take and how you can be most helpful
- Be sure to look out for your other parent if they are the primary care partner and ask them how you can help them as well – you can be a great relief and resource to them
- Be willing to have difficult conversations around maintaining independence while also remaining safe
- Medication is only one of the treatments available for people with Parkinson’s – community connection, fundraising, being active and supporting others on the same path can go a long way to helping you live well with Parkinson’s
- If there isn’t something in your community that works for you, start something
- Don’t put off tomorrow what you can do today
- There are so many people going through this experience – you don’t have to go through this alone
Concepts Mentioned in this Podcast & Further ReadingThe VictorySummit® event
The Translational Genomics Research Institute (TGen)
Muhammad Ali Parkinson Center (Barrow Neurological Institute)
The Every Victory Counts® eBook
The Victory Crew®
Care Partner Videos with Connie Carpenter Phinney
Rewriting the Rulebook for Parkinson’s Care Partners
The Big 16: What to Say (And What Not to Say) to Someone Who Has Parkinson’s
The Parkinson’s Care Partner’s Digital Toolbox
How to Stay Healthy and Avoid Burnout as a Parkinson’s Care Partner
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