Young Onset

How is the care partner experience different when my person is living with young onset Parkinson's (YOPD) instead of later-onset Parkinson's?

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YOPD is often (though not always) defined as being diagnosed with Parkinson's when you are younger than 50. The emotional, social, physical, and psychological needs of those diagnosed with YOPD are often different from those diagnosed at an older age. For example, your person with Parkinson's might be soaring in their career, expecting a baby, raising multiple school-age children at home, or getting ready to buy their first house. These concerns are different than those of people who are diagnosed later in life. In addition, although YOPD is characterized by the typical four symptoms of Parkinson's (rigidity, slowness of movement, tremor, and postural instability,) the progress of these symptoms is slower. Presenting symptoms also tend to differ for people with YOPD; the most common initial symptoms for YOPD are rigidity and painful cramps. In contrast, the most common initial symptoms for later-onset Parkinson's are tremors and instability while walking.

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Given the many differences between YOPD and later-onset Parkinson's, your priorities as a care partner will likely differ from those of partners caring for people diagnosed later in life. Your role may begin and stay for many years in the realm of emotional support. Once people are diagnosed with YOPD, they often struggle with how to share their diagnosis. Due to fear of potential job implications, some choose not to tell their boss or co-workers. Some feel isolated because they don't know anyone else their age with Parkinson's. Some withdraw completely because facing it head-on is too overwhelming. These are normal responses to hearing the news that you have a chronic and progressive disease; however, if your person with YOPD delays to initiate appropriate care due to these factors, it can negatively impact their quality of life. (It can negatively impact yours as well; keeping a YOPD diagnosis a secret delays your ability to seek support. Your life has been turned upside-down too). For these reasons, its' important to work with your person with YOPD and plan to share their diagnosis in a way that allows both of you to feel comfortable and supported.

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In addition, your person may need your encouragement to start a regular exercise program, improve their sleep hygiene, take their medications consistently, connect with others, eat well, and take action to live well every day. Regardless of your person with Parkinson's age, now and at the time of diagnosis, constant communication is essential to being a supportive care partner. Ask your person with YOPD what they need from you and remember that you are their partner in care.

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Also, remember that this journey is a marathon and not a sprint. You want to be sure that your life is full of quality activities and social engagements that don't just reflect Parkinson's. For some, professional counseling and therapy can be a very helpful way for couples and families to cope with achieving balance throughout your loved one's condition.

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Source:

The Davis Phinney Foundation. Page 17. How is the care partner experience different when my person is living with young onset Parkinson's (YOPD) instead of later-onset Parkinson's? Every Victory Counts for Care Partners. "Manual." Sixth Edition, 2021.