Pillar 5:
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Pillar 5:
Embrace Life Outside of Parkinson’ s
People living with Parkinson’ s often hesitate to share their diagnosis because they don’ t want to be treated differently, pitied or seen through only the lens of a disease. As a care partner, you may also be unsure about sharing your loved one’ s Parkinson’ s diagnosis or your role in their journey. This reluctance is normal and reasonable: No one should feel reduced to a single role, condition, success, mistake, hobby or preference.
We can’ t control how others see us. We can, however, choose how we respond to their views and how we define ourselves. You both are— and deserve to be seen as— many things: a sibling or best friend, a teacher or volunteer, a gardener or cyclist, a world traveler or puzzle lover. Having Parkinson’ s or being a Parkinson’ s care partner is one part of you, not the whole story.
Still, Parkinson’ s is now part of your life and identity. And Parkinson’ s requires space, time and attention. So, the question is: How do you give Parkinson’ s what it needs, and no more?
Redefine( or Refine) Yourself
Major life changes like a Parkinson’ s diagnosis create a natural pause to check whether you’ re living life in line with your values. For example, if family is important but you visit only once a year and talk sporadically between, you might want to look for ways to connect more often.
Many people say that, while of course they wouldn’ t choose Parkinson’ s, the diagnosis gave them a chance to re-evaluate their life and priorities and to bring them into better alignment.
I quilt with a group of friends. We text and meet regularly, especially during the winter. We even met over Zoom during COVID-19. That group is a lifeline.
Jessie Drew-Cates
Ask yourself:
+ Who and what matter most?
+ What do you value?
+ What makes you you?
+ When are you most content or fulfilled?
+ What brings you joy or meaning?
These answers serve as your compass for bringing more of who and what is most meaningful into your life, both within and outside of Parkinson’ s.
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