Celebrating Parkinson’s care partners
In honor of National Family Caregivers Awareness Month, Lundbeck celebrates the extraordinary efforts of the more than 65 million people in the U.S. who care for a family member or friend each year1. This includes care partners for the nearly one million Americans living with Parkinson’s disease2.
As a company dedicated to restoring brain health so every person can be their best, Lundbeck not only strives to deliver innovative treatments for people with Parkinson’s, but also to maintain the communities and support networks that are so critical to people living with Parkinson’s. This includes Sidekicks®, an intergenerational program presented by Lundbeck and the Davis Phinney Foundation, in collaboration with the American Parkinson Disease Association, Parkinson’s Foundation, Parkinson & Movement Disorder Alliance (PMDAlliance) and The Michael J. Fox Foundation for Parkinson’s Research. Sidekicks brings together youth and people with Parkinson’s in cities across the U.S. to share their stories in fun and creative ways that promote mutual understanding and foster connections.
Two care partners who attended the Sidekicks program shared with us their experiences in maintaining a positive outlook in supporting their loved ones with Parkinson’s disease, and they offered advice for others on a Parkinson’s journey:
Bob M., of Rolling Meadows, Ill., is an outgoing 82-year-old who is quick with a joke and friendly conversation. So it’s no surprise that staying active and involved in the Parkinson’s community is an important part of his routine as care partner to his wife Gail, who was diagnosed with Parkinson’s six years ago at age 63.
Today, wherever Gail goes, so goes Bob—from her regular exercise class, to doctor appointments, speech therapy, support groups and community events. He says participating in activities together helps him gain a better understanding of what she’s experiencing as a person with Parkinson’s. “For me to be a better care partner, I need to be involved in almost every activity Gail does. It helps me understand what’s happening with her body,” he explains.
That’s not all: Participating in activities together helps both of them maintain a positive outlook on living with Parkinson’s, Bob says. “When I get involved with what she’s doing, then I’m involved with the people and this Parkinson’s community. It all gets back to a sense of community,” he explains.
“Just being with other people is a biggie,” agrees Gail. “In any disease, you need people around you.”
Bob and Gail acknowledge that staying active and involved is often easier said than done, especially when Parkinson’s can make it challenging to get around outside the home. That’s when having organized activities, like an exercise class or Sidekicks program, can make a difference, Gail says. “It’s easy to say that you want to be active, but it’s helpful to have something in place to make sure you go,” she suggests.
Bob and Gail participating in a Chicago-area Sidekicks program
Staying active and involved in their community is also important to Lily and Brian R. of Carson City, Nev. (pictured at top), especially since Brian’s Parkinson’s diagnosis 10 years ago at age 48. “I think it gives us hope when we can focus on something positive and share in the excitement of things like talking to another support group,” Lily says. “It fuels that space of self-worth, where disease can take that from you.”
As Brian’s disease has progressed, the couple has focused on finding common interests, such as riding recumbent bikes together – easier after dystonia in Brian’s feet made cycling difficult; and Sidekicks participation, which Brian, a retired schoolteacher, facilitated for his local community.
“It’s hard to stay active with things outside doctor’s appointments and physical therapy and all the other things that fill up our calendar,” Lily explains. “But it’s really essential to have those things that make you happy, and Sidekicks was definitely one of those things. It was incredibly uplifting and heartwarming for care partners who attended to see their person with Parkinson’s light up.”
Brian understands well that some people with Parkinson’s may be hesitant to jump into activities. “I have a very outgoing and gregarious personality, but with Parkinson’s, I find I get more symptomatic when I’m out in public,” he says. “My resistance to participate comes from knowing my symptoms might be worse when I’m out doing something. Knowing people have an expectation of me to show up and participate, it motivates me more to move myself.”
Brian also shared how important it is to find ways to give back closer to home – to each other as partners in Parkinson’s. For example, Brian likes to give Lily massages because it helps with his hand strength and is also a way for Brian to recognize Lily’s efforts in caring for him. “The best thing is when you can connect and find something you can share together that honors the caregiving aspect of your partner,” he says.
“Being a care partner changes your life,” Bob says. “But it also gives you purpose, and that’s huge. Purpose is what gets us all through.”
Sources
1. Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP; November 2009. Accessed through Caregiver Action Network website on October 28, 2019.
https://caregiveraction.org/resources/caregiver-statistics
2. Parkinson’s Foundation website. Accessed October 29, 2019. https://www.parkinson.org/Understanding-Parkinsons/Statistics
