Navigating the Unexpected: Lessons Learned from My Parkinson & Care Partner Experience

I was in the ‘happiest place on earth’ when my journey as a Parkinson’s care partner first began. It was during a family trip to Disney when I first noticed my wife dragging her leg. Initially, she dismissed it as just being tired, but I became more concerned as the symptoms persisted. After returning home we saw our general practitioner several times only to be told there was nothing to worry about. We weren’t reassured. As our worries grew, we sought the opinion of several neurologists before finally receiving an accurate diagnosis.

I can still remember that day. I was at work trying to patiently wait for her doctor’s visit to be over. When she called, she was crying – she had Parkinson’s disease (PD). We were both taken aback by the diagnosis as she had no prior family history, and it was something we hadn’t considered. What made it even tougher was the lack of empathy she received from the doctor. It was clear that he thought she was expecting the news and did not provide the emotional support that she needed at that moment.

Eventually we had to share my wife’s diagnosis with our loved ones. My family is my top priority and I made it clear that I would take care of her for the rest of my life. When you think about it, you become a care partner on the day you get married when you vow to support each other, in sickness and in health, for better or for worse. We both take care of each other and do what needs to be done. And as the saying goes, we aren’t perfect, but we’re perfect together.

As someone who works within the Parkinson's field, I was familiar with the various support groups available and decided to attend them myself. What I found particularly interesting was that I was often the only man in a group full of women. While caregiving and nurturing tend to be associated with women, I've found that stepping outside of my comfort zone and taking on these responsibilities has been a rewarding experience, challenging me to become more patient, caring, and giving.

Attending these sessions and becoming a care partner has also taught me a lot about myself and the importance of being there for the ones I love. It’s a constantly evolving role, one that requires me to flex to meet the needs of my family and myself. And while my journey is far from over, I’ve learned several important lessons along the way:

• Have a plan and focus on what matters. As the disease began to affect my wife’s mobility, I've taken on more responsibilities in the household, from grocery shopping to cooking to dry cleaning. I find it helps to have a game plan to ensure everything gets done and done well. I’ve also learned to simplify my life to make it easier to focus on what truly matters -- cherishing every moment with my loved ones and finding happiness in the little things.
• A progressive disease requires continuous adjustment and communication. Although my wife still works and drives, her frequent falls became concerning. We tweaked her morning routine and medications so that she’s safe and feels confident while walking downstairs. I know these kinds of adjustments will be needed over time so I encourage her to communicate with her doctor so that he can better evaluate and treat her condition. Of course, knowing that she often puts on a brave face, even with her doctor, I make it a point to speak with him directly to ensure that he has a realistic picture of how she's doing.
• Sometimes you need to let it be. My wife never complains and sometimes I wish she would. I can tell when she's not doing well, but I have come to understand the importance of being patient and granting her the space she needs. All I can do is be there for her when she's ready to confide in me.
• To provide the best support for her, you must be the best version of you. Taking care of my physical and mental health allows me to approach each day with a clear mind and a positive attitude, ready to tackle whatever challenges may arise. I start my day with meditation followed by a workout at the gym. This routine is what gives me the peace of mind and clarity I need to be the support system my wife deserves. Whether it’s riding motorcycles with my son and friend twice a week or going sport fishing with the family, I also make time for the things that bring us closer together as a family.

Life is full of twists and turns, and we've certainly had our share. Yet, every day we have a choice. We can dwell on the impact that Parkinson’s has had on our lives, or we can be grateful for what we have -- our two amazing kids, our wonderful home, and the life we continue to build together. Every day we choose to live with gratitude. Despite it all, we feel blessed to have each other and to be together, fostering an environment that feels like the happiest place on earth.?