Partnering through Parkinson’ s
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Melissa Clague
Melissa and her wife, Stephanie, have been living with Parkinson’ s since 1999.
In 1999, a neurologist diagnosed my wife, Stephanie, with with essential tremors. She was given medications, but the tremors kept getting worse. After years of seeking answers, she finally met a movement disorder specialist who correctly diagnosed her with Parkinson’ s and prescribed carbidopa / levodopa. It was life-changing.
When Steph was misdiagnosed and struggling, we were preparing for a life of disability. Getting the right diagnosis and treatment in 2018 changed everything. She was herself again. I was joyful for Steph, but I also grieved all the years lost to misdiagnosis. That grief still surfaces sometimes.
We know that Steph has a progressive disease, but we’ ve made a conscious decision to leave the phrase“ care partner” to our medical teams. For us, the term implies an imbalance— that one person is the patient who needs help, and the other is a helper. In medicine, a care team makes sense because of hierarchy and expertise. But in our relationship, we’ re simply life partners. The term“ care partner” feels like importing medical hierarchy into our personal lives. It doesn’ t belong there.
As part of the LGBTQ + community, we’ ve always needed a medical team that respects us as partners. At every new appointment, Steph still wonders,“ Will this nurse or doctor be biased? Does she say‘ wife’ or‘ partner’?” That mental energy takes away from what we need to focus on. Thankfully, her current team treats us as we are.
I don’ t really think about disease progression. It’ s a scary thing, so I put a big rock on those feelings. I only occasionally look underneath. Living in worry doesn’ t help. Two years ago, we traveled through Europe with our kids and my parents: 18 days, five countries, a new hotel almost every night. Steph carried luggage, hiked, did everything. We’ re planning another trip. Those moments remind us of what’ s possible, even with Parkinson’ s.
Most resources are aimed at partners who are full-time caregivers. That’ s important, but it’ s not our reality. I’ d love to see broader options for couples whose partners are still active and managing well. Being a partner to someone with a chronic condition is challenging, especially a progressive one. But it’ s dangerous to frame it only as caregiving. Right now, I don’ t“ take care” of Steph; we are partners. I hope the Parkinson’ s community continues broadening its understanding of partnership across different stages of the disease.
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