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Beginning Your Journey with Parkinson's

Many families know for years that something is going on with a loved one. But the official diagnosis of idiopathic, typical Parkinson’s disease (PD) can still come as a shock, often misclassified as denial. People often ask:

  • How can the doctor know for sure?
  • Should tests be run? (There are no definitive lab or imaging tests for PD.)
  • Do we get a second opinion? (In many cases, yes.  A neurologist who has completed a fellowship in movement disorders is most qualified to make the diagnosis.)

These are valid questions. As you begin researching the disease and what it may mean for the person with PD, you will also have to figure out what it means for you.

How do I adapt to the diagnosis?

Your loved one’s PD diagnosis may have changed your life overnight. However, Parkinson’s caregiver is a role and an identity you grow into.

Parkinson’s is a progressive disease. That can make it hard to define your role in your loved one’s journey, as your involvement and responsibilities will change along the way. Think about how you’ll share the diagnosis with family, assess your work-life balance and prioritize your own needs.

Consult with an experienced caregiver

It can be helpful to you, the person with PD and your family to talk with a seasoned caregiver. He or she has already experienced many situations you may face down the road and can share coping strategies. An experienced Parkinson’s caregiver can also provide reassurance that this chronic health condition is highly livable and progresses slowly for most people.

Build your PD knowledge base

As your loved one progresses through stages of Parkinson’s disease, you will progress through stages of caring. Learn all you can about the disease early on so you can participate in health care discussions, make informed decisions and provide emotional and physical support now and as needed in the future.
To start:

  • Order our educational materials to familiarize yourself with Parkinson’s disease. What You and Your Family Should Know and Medications are two good titles to start with. Caring and Coping is our book specifically for Parkinson’s caregivers.
  • Find a Parkinson’s support group in your area. In addition to providing a comfortable environment for asking questions and sharing experiences, support groups can lead to lasting friendships. Some groups are for caregivers only, while some are a mix of caregivers and people with Parkinson’s. Contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or helpline@parkinson.org for help finding a group near you.

Begin the PD journey

Parkinson’s disease impacts each person in a different way, so there is no one-size-fits-all approach to caregiving. Your journey is unique, but you share it with the person with PD:

  • Discuss together how you will share the news with family and friends. If you have children still living at home, choose an age-appropriate level of information and approach. How do you begin to explain PD? Read the Parkinson’s Foundation tip sheet “How to Talk with Your Family about Parkinson’s.”
  • Be prepared for a barrage of free advice. Friends and adult children are notorious for suggesting miracle cures from the latest online article about PD. Be polite, but run all ideas past the health care team. If someone is persistent, share the Parkinson’s Foundation tip sheet for secondary caregivers, “What Not to Do.”

At the same time, always remember to consider your own needs for wellness, self-care and support!

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