Early Stage Caregiving

Caregiving in the early years: How does your family adapt to the diagnosis?

Even though many families know for sometime that “something” is wrong with the person who has PD, the official diagnosis of Idiopathic, typical, Parkinson’s disease often comes as something of a shock.

A common reaction of the patient and primary caregiver, often misclassified as “denial”, is really more like a state of “overwhelm”.

  • How can the doctor know for sure?
  • Shouldn’t tests be run? (there are no definitive lab or imaging tests for PD)
  • Should we get a second opinion? (in many cases, yes!)
  • Consult with an experienced caregiver

All of these are valid questions. But as the work-up proceeds, and you begin your initial research into this diagnosis and what it may mean for the future a seasoned caregiver can be most helpful to your family and the person with PD by:

  • Providing reassurance that this chronic health condition is highly “livable”, only slowly progressive in most patients, and does not shorten life expectancy.
  • Taking the lead in obtaining a second opinion from a neurologist who has completed a fellowship in movement disorders (if such is not the case with whoever made the original diagnosis).
  • Ordering “beginner” level educational literature such as NPF manuals, “What You and Your Family Need to Know”, and “Medications for PD” booklets.
  • Exploring whether there is a Parkinson support group in your area to learn more about the condition from other patients and caregivers.

Want to Learn More?

Read this "Parkinson Report" article:
Five FAQs About Hospitalization

Request a free copy of this NPF manual:
What you and your Family Should Know

Watch this video:
What do caregivers need to know?

Caregiving content reviewed by: Susan Imke, RN, MS, Family Nurse Practitioner, Senior Health Solutions

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