Ask the Advocate: How Do You Stay Motivated with Parkinson's?
It can be difficult to stay motivated when living with a chronic illness like Parkinson's disease (PD). The symptoms of the condition may present both physical and emotional setbacks.
To help others cope with the challenges of PD, we asked our ParkinsonsDisease.net advocates, "How do you stay motivated with Parkinson's?" or for caregivers, "How do you help a person with Parkinson's stay motivated?" Here's what they had to say:
Advocating for research
"How can I not stay motivated about an illness that impacts all facets of my life? To ignore Parkinson's is not an option. There is too much to be done in educating the world about the need to find and stop all the causes of PD. Science still has a lot of unanswered questions.
If we can understand how and why we are the way we are, we may be able to localize better drugs and therapies to placate symptoms and even the root cause of the illness." – Karl Robb
Working as a team
"My approach is to keep both myself and my husband Karl motivated. It is so easy to find ourselves stuck in ordinary tasks. Working together helps us stay accountable. Together we will discuss action items for the day and openly share which ones we might need an extra nudge in completing.
Exercise is one that we both need encouragement to work on. Rock Steady Boxing workouts are on the calendar 3 times a week. Not only am I Karl's workout partner and focus mitts holder, but I also try to encourage him with compliments and provide feedback." – Angela Robb
Connecting with others
"I won’t give up and let PD take over. I have too many things I want to do, including playing with my grandchildren, seeing friends, traveling with my husband, and much more. My work within the PD community continues to motivate me.
This includes writing my weekly blog, reaching out to those who are newly diagnosed and especially women with Parkinson’s. I started a biweekly Zoom meeting for women with PD a year ago. Just interacting with so many amazing women is a huge motivation factor." – Sharon Krischer
Finding your purpose
"With every stage of PD comes new challenges, so staying motivated can be a daunting task. Even harder to do during the current pandemic for a social butterfly like me. However, having a purpose is key.
I like to schedule projects and participate in events with others at least once a week, such as doing dance for PD or sing-along sessions with the World Parkinson's Conference. These help pump the natural neurochemicals when I achieve a task and help me make new connections, improving my overall well-being." – Maria De Leon
"I stay motivated by having gratitude. When I find myself getting somber about having Parkinson’s, I am reminded of how grateful I am to have the love and support of my family and the knowledge that my situation could be much worse.
Perhaps Micheal J. Fox said it best in his most recent book, that with gratitude, optimism becomes sustainable. I try hard to not be disabled in spirit, and I try not to focus on what I can’t do. Rather, I celebrate what I can do." – John Bennett
Utilizing educational resources
"I’m a thinker, which means that I often process my life dilemmas by turning to books and podcasts. I’ve referred to online resources to find ways to keep my Dad updated with the latest information. I’ve found that sharing research with him gives him the resources to explore new treatments.
When we first learned that he had Parkinson’s, 1 of my restaurant patrons told me to look into Rock Steady Boxing, which Dad has been doing religiously for several years. Finding motivation and encouraging your loved one to stay motivated can look differently on a daily basis, but I often look to the experts for solutions." – Mary Beth Skylis
Support from loved ones
"I am motivated to live well with PD by my husband of 44 years, who stands by me every day. We exercise together, which I hope helps delay my disease progression.
Although I can handle the 6-hour roundtrip drive to meet with my movement disorder specialist, he drives to alleviate my fatigue and stress. I also am motivated by my wonderful friends, who offer lots of encouragement. In turn, I try to do or say what I can to motivate the members in our support and exercise groups." – Lorraine Wilson
"I’m more motivated when I’m positive, since I’m not feeling the effects of PD and emotional exhaustion. When mandated to be somewhere, like work or a family get-together, or when I have a financial stake in something, it motivates me. For example, this could be purchasing tickets to an event or plane tickets.
I'm also motivated when reaching a point where sheer hatred of where I’m at spurs a reaction. For example, weight and rigidity mixing with boredom and worsening symptoms tell me it’s now or never." – Dan Glass
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?