How Do Individual Circumstances Affect Care Partnership?
Beyond passing time and changing symptoms, personal, social and cultural factors further shape what care partnership looks like.
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Age at Diagnosis
The care partner relationship may differ based on when in life a person is diagnosed. People with early-onset Parkinson’ s( EOPD), diagnosed at 50 or younger, often have different needs from those diagnosed later in life. These needs might be related to stigma and misconceptions about Parkinson’ s, caring for young children and continuing careers, on top of managing symptoms. Resources specific to EOPD, including support groups( if available) and outspoken advocates with early-onset disease, can offer insight and guidance. Visit michaeljfox. com / eopd for more.
Relationship Status
Your relationship with your loved one before diagnosis also plays a role. Some people have a solid relationship, which creates a strong foundation for care partnering. Others have a strained or distant relationship that adds additional uncertainties and emotions. Acknowledge where your relationship stands, and work through any challenges with a counselor or other trusted source, if helpful.
Personal Life
Your personal life can impact how much and what type of support you can offer. We all have busy lives that include careers, families, hobbies and more. Some of us experience our own issues related to aging or living with medical conditions. Others are part of the“ sandwich generation,” tasked with caring for both a young family and older relatives at the same time. Setting boundaries, practicing self-care and asking for what you need can help you balance caring for yourself and others.
Patient Council member Claudia Revilla at home in Texas with her husband, Carlos. Claudia was diagnosed with Parkinson’ s in 2010 at age 45. She is committed to education, advocacy and the search for a Parkinson’ s cure.
Distance
Some care partners live with their loved ones; others care from several states or countries away. Those who live at a distance may want to build a habit of regularly checking in— both with their loved one and with their loved one’ s main care partner( s).
You also can support in other ways:
+ Join doctor visits by telephone.
+ Schedule or coordinate appointments.
+ Submit insurance claims.
+ Make regular in-person visits. Consider scheduling medical visits during those times so you can attend in person. Look for ways to give the primary care partner a break while you’ re there.
+ Ship household supplies, groceries, medical devices or medications to your loved one’ s home.
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