Living with Uncertainty: Tips for Having a Parent with Parkinson’s

Watching a parent navigate Parkinson’s disease (PD) brings forth a flood of questions about the future. At some point, you may wonder if Parkinson’s is genetic and whether you’ll develop it. Having a parent with PD naturally comes with many concerns. The following five tips offer ways to approach this uncertainty.

1.  Understand the role that genetics plays in developing PD.

Genetics cause about 10% to 15% of all Parkinson's,  which means their children may have a higher risk of developing PD. If you learn that your parent carries a genetic variation linked to PD, this does not guarantee that you will eventually develop the disease. Still, it is natural to be uncomfortable with that risk, even if it is low.

When a parent has Parkinson’s, you may be thinking about genetic testing. Ask yourself, “Will knowing if I carry a genetic link to PD help me or cause me to worry more?”

If you want to get genetically tested, consult with a genetic counselor first to discuss the potential benefits and drawbacks. Genetic testing helps estimate the risk of developing Parkinson’s but cannot provide your probability of developing the disease or guide you on how to prevent developing PD

2.  Prioritize what you can do now for your well-being.

Researchers believe Parkinson's is caused by a combination of genes, environmental and lifestyle influences. While you can’t choose your genes, you can try to make choices that help you stay as healthy as possible, increasing your likelihood for a healthy future overall.

Make it a priority to treat your body well. Try:

• Exercising regularly.
• Eating nutritious, heart-healthy foods.
• Getting adequate sleep.
• Keeping your mind active by learning new things.
• Avoiding loneliness by staying engaged socially.

Consider partnering with people for help working on these priorities, or finding a support group that works for you. Just like your parent with PD needs a care team to manage the disease, start working to create a team to support your health goals.

3.  Strive to maintain a positive outlook on life.

For some adult children, the possibility of developing PD can feel like a looming threat that may strike any day. For others, their PD fears may be mild and fleeting but still unsettling. Big or small, ongoing worries about whether you’ll develop PD can impact your outlook on life and disconnect you from the good around you and wellness within you.

Mindfulness exercises may help you regain focus on the present, and gratitude practices may help you savor life’s small joys. Take breaks from your worries by making time for favorite activities and uplifting relationships. Seek out professional support to help you cope with the unknown if the anxiety is affecting your day-to-day life. Explore our free Mindfulness Mondays events.

4.  Tend to your feelings of grief and loss.

Your parent’s Parkinson’s diagnosis and journey has likely impacted you on a deep level. Perhaps they are doing well but you worry about their future. Maybe you are already navigating ambiguous loss, a common experience for people with Parkinson's and their loved ones when there is a loss of emotional connection. Perhaps they have advanced Parkinson’s or have even passed away.

Because of the love you have for your parent, you may experience loss with every stage of their disease, and these losses can affect your body, mind and spirit.

Trying to make healthy choices or keep a positive outlook can be difficult when you are grieving. You are tasked with being hopeful amidst painful feelings. This calls for extra attention to your self-care and maintaining connection with a caring community.

5.  Define and create your well-lived life.

Reflect upon what you can do now to feel confident that you are living your life to the fullest, despite what may happen down the road. Ask yourself, “What would a well-lived life look like to me? In what ways am I already living that life? How could I work towards my definition of a well-lived life?”

The following suggestions may also help you as you seek to live your life to the fullest:

• Consider diversifying your interests and hobbies.
• Try to identify what brings you joy and strive to make more time for it.
• Seek out opportunities that may bring your life new sources of meaning and purpose.
• Prioritize what will help you feel well and whole.

Additional Resources

• Care Partner Program: a series of self-paced online courses designed for care partners

• Building Your Resilience

• Can't Stop Worrying About the Future?

Regardless of where you are in your caregiving journey, explore our Care Partner pages.