Sarah Jones, CEO Emeritus of the Parkinson & Movement Disorder Alliance (PMD Alliance) talks about the importance of caring for those who care for us.
Sarah Jones’s mother-in-law, Helen, was a fierce woman. The responsibilities associated with being a care partner were weighing on her heavily. Helen’s husband had been diagnosed with Parkinson’s disease, and Sarah witnessed the effects it had on her in-laws firsthand—the effects it had on her father-in-law, of course, but also on Helen.
Because of the nature of Parkinson’s, the changes it precipitates can be so incremental that they often go unnoticed. This can be true for the person with the disease, and for a care partner. Take Sarah’s mother-in-law. As Sarah recalls, “She wasn’t sleeping. She would wake up 6 times a night. And she didn’t even consider it abnormal. Let alone unhealthy.”
Shortly after that eye-opening visit, Sarah began laying the groundwork for what would eventually become the PMD Alliance, an independent, national nonprofit dedicated to providing opportunities for people affected by movement disorders to learn, live more fully, and spark meaningful connections with those around them. She explains that PMD Alliance cares for people with Parkinson’s by ensuring that their care partners, adult children, and support group leaders are also taken care of.
Among the first programs ever offered by the PMD Alliance was the Renew!® Retreat—a one-of-a-kind interactive workshop where people with movement disorders and their care partners learn about disease progression, treatment options, and wellness practices, as well as share their personal experiences with their peers. Another program, Getting Real™Online, a chat forum designed specifically for care partners and adult children to be able to ask targeted questions about disease progression in a safe, non-judgmental space. It’s here that they can learn about what to expect from Parkinson’s over the course of a lifetime.
What do our care partners need to hear? According to Sarah, “They need to hear they’re doing a good job. Because the guilt and fear are relentless. And there’s no playbook, so many people are afraid they’re going to make the wrong decision. My wife and I learned that the hard way. We kept telling my mother-in-law what she should be doing—we were trying to be helpful but all it did was stress her out. What we really needed to be saying was ‘you’re doing great.”
Among the PMD Alliance’s many accomplishments, Sarah is most proud of the level of conversation that the organization has inspired nationwide regarding care partners. People are starting to become aware of the crucial role they play in disease management—how they’ve become an integral part of the treatment plan. Integral, which is to say indispensable.
To learn more about Renew!® Retreat, Getting Real™ Online, or other PMD Alliance programs, visit PMDAlliance.org
