Telling Your Personal Story

Telling your story is a powerful tool.  Whether you are a person living with Parkinson’s disease, a care partner/caregiver, a spouse, a friend, a coworker, or a family member you have a personal story about how Parkinson’s has affected your life.  When communicating with Members of Congress, your personal story about Parkinson’s disease creates a connection, educates and raises awareness among your elected officials, and helps your members of Congress and their staff decide what the important issues are in their districts and states.  Telling your personal story in your community, at support group meetings, community events, or in line at the grocery story is a great way to educate others and invite them to get involved in the fight to cure Parkinson’s disease.

Your personal story will vary depending on the audience.  When speaking to a support group or a community organization about Parkinson’s disease, you may choose to highlight specific issues and speak at length about others.  When meeting a member of Congress or their staff, you will likely have to shorten your story, as your time for communication may be shorter.  When telling your story, be sure to include how Parkinson’s has affected your career, your ability to work, your family, and/or the impact of Parkinson’s in your community. 

The following tips were compiled by PAN Arizona State Coordinator, Jean Burns.

Preparation
You may need to practice telling your personal story.  In preparation for meeting members of Congress or speaking to groups, you may want to write down your story or practice in front of a mirror or your family.  Telling your personal story is not memorizing – it’s just getting comfortable relating your life with Parkinson’s.  In fact, you have probably done this already with friends and family.  Your story will be best when you are at ease and natural.

How to Tell your Story
Make and keep eye contact.  Be sincere.  Pay attention to what the other person says.  Answer his/her questions and weave your story in with his/hers.  Show that you have common ground.  Express your sympathy and understanding if your audience has a family member with Parkinson’s disease (or Alzheimer’s or MS, etc.).

Breaking the Ice
Often, starting a conversation is the most difficult part.  When meeting with your member of Congress or their staff, you may want to start by asking a question.
“Do you know anyone with PD?”  If their response is no, then you can say “Neither did I, until I got this diagnosis” or “Well, now you do”.  If their answer is yes, you can ask who and begin your personal story, weaving your stories together.

Briefly talk about your background.
How did you feel when you got the diagnosis?  How did your family feel?  Has it affected your work?  How has it affected your life?  What barriers have you faced?  What things are more difficult for you?  What has surprised you?  Are you depressed? 
 
Following is an example:
I was 50 when I was diagnosed with PD. I was shocked and in denial because there was no history of PD in my family.  Suddenly all of the plans my husband and I had made for our “golden years” were thrown out the window. I am now facing life with a progressive incurable disease. We had not signed up for long term insurance and now I am uninsurable…  I am no longer able to work because ….  My children are in denial and totally ignore the topic of my health … Sometimes I lose hope because …