Being a care partner for someone living with Parkinson’s disease can be just as rewarding as it is challenging. We asked Melinda Sych, Brian Grant Foundation board member, how she and her husband, Troy, keep their relationship going strong.
When a partner or spouse is diagnosed with Parkinson’s disease (PD), stepping into the role of care partner can be a big change and may eventually take a mental, physical or emotional toll. On the flip side, it can also strengthen the relationship and prompt a newfound appreciation for the fragility of life.
“You can let Parkinson’s disease change your life in a positive way or in a negative way. We choose to let it change us in a positive way,” said Melinda Sych of Vancouver, Washington. “Time is not infinite when you have Parkinson’s. Life becomes more precious, and we value the time we spend together more than we did before he retired and some of his symptoms progressed.”
Melinda and her husband, Troy, have been married since 2012. Troy was diagnosed with early-onset Parkinson’s disease toward the beginning of their courtship. But that didn’t stop the couple from blending their families, going on fun adventures and building their dream life together.
We asked how she and Troy have kept PD from interfering with their nearly 10 years of marital bliss, and she offered the following advice.
Do your research.
“Educate yourself as best as you can. The progression of Parkinson’s comes in steps and waves. You’ll be fine for six months, then suddenly there is a big step change. Things like body language, facial expression and vocal tone are not the same. If you don’t have that foundation to fall back on, it can be challenging. We navigated through it, but it would have been nice to know those things ahead of time,” Melinda said.
Make friendship a priority.
“My husband and I have an amazing friendship, and that has helped us navigate through these changes. We have a great sense of humor, and let’s be honest – PD requires a great sense of humor. You need to be able to weather some of those darker moments of PD with a laugh. It’s a roll-with-the-punches kind of approach,” she said.
Have an open dialogue.
“We were really proactive in having some of those more difficult conversations almost from the very beginning of our relationship. I would encourage everyone to do that early on whether they have Parkinson’s or not because you never know what’s going to happen. It’s just healthier in my opinion for any couple to proactively plan for the long term,” Melinda advised.
Know when to ask for help.
“You don’t always know when you are needed to be a caregiver and when you are needed to be just a regular partner. As the disease progresses, it becomes harder for them to ask for help. As the caregiver, you need to be able to step in and ask for help on their behalf. That sort of thing can be a challenge to figure out, which is why communication is so important,” Melinda said.
Keep your children in the loop.
“Make sure communication with your kids is meaningful and clear. At first, they don’t see the symptoms; everything looks the same. They don’t understand some of these new behavioral changes that come as the disease progresses or with the medications. If you are not talking openly and honestly with your kids about those changes, it can be a harder adjustment for them. There needs to be more resources for helping children of people with PD,” she said.
Stay active together.
“Staying active helps you maintain a sense of control. There are physical challenges associated with Parkinson’s that forces you to change your lifestyle. If you’re an active person, you need to be flexible and build new activities into your life. It’s important to replace those activities you can no longer do with things that are also active. We have a home gym and a pool. We spend time working out together and also stay active with projects at home and in our garden,” Melinda said.
Find your tribe.
“It can be a huge benefit to get to know other couples who are going through the same thing. We started engaging with other people who had been diagnosed and were in our same age group. They are a blessing in my life and a pleasure to spend time with. I got to know other spouses of Parkinson’s patients and learned a lot of things that you may not necessarily hear from a doctor, such as which medications to stay away from,” she said.
Don’t let PD control your life.
“It’s important to remember that there are a lot of amazing years left in your life that can be high quality, and if you do the right things like exercise consistently and eat healthy, you can make that last a lot longer. Troy and I both try to live the best lives we can live. And I think everybody should aim for that, whether you have Parkinson’s or not.”
