CurePSP hosted a day-long conference for patients, families, and caregivers living with neurodegenerative diseases, including Progressive Supranuclear Palsy (PSP), an atypical parkinsonism disorder. The speaker was Jessica Shurer, LCSW at UNC Movement Disorders Center. She talked about informing family and friends of a diagnosis in order to gather support, and how family dynamics can change after a diagnosis. (We are sharing these notes with those in the Parkinson’s community since there was nothing PSP-specific about the talk.  The “diagnosis” could be any condition.)

Jessica began her lecture by explaining why you should talk about your diagnosis. Informing people about a diagnosis allows you to be in control of the information someone else gets, and is an empowering way to educate others. You can also gather support from the people around you.

Jessica went on to tell people how difficult talking about a diagnosis can be, and it’s important that you be gentle with yourself during the process. Sometimes you may get sick of explaining the diagnosis, or sometimes you may wish people talked about it more, but Jessica said there is no right or wrong way to talk about it. 

While family dynamics can become complicated with the introduction of a diagnosis, it is important for all of those involved to stay connected. A disease and role changes involved in caring for that person impact the whole family, and giving and receiving help does not always come easy. It’s important to keep an open dialogue. 

Jessica ended her lecture by sharing the “Manifesto of the Brave and Brokenhearted,” by Brené Brown. She believes the manifesto can be empowering to those who have recently had a diagnosis or those who are having a hard time explaining their diagnosis to their family. You can find the manifesto at the end of the lecture. 

The lecture was recorded and will be available shortly on CurePSP’s YouTube page here.

The speaker’s slides are available for download here.

Stanford Parkinson’s Community Outreach has a webpage with a lot of resources on family and PD here.

I listened to this lecture and am sharing a summary below.

– August Besser

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“Let’s Talk: Discussing the Diagnosis & Navigating Family Dynamics” – Lecture Notes

Speaker: Jessica Shurer, LCSW

Conference Host: CurePSP

November 14, 2020

Summary by August Besser, Stanford Parkinson’s Community Outreach

Why Talk About the Diagnosis?

•  “Owning it”
• Allows you to control the information a person gets
• Empowering way to educate others
• Normalizing it for others, for yourself
• Gather support

Anticipating Different Reactions

• The expert
• The fixer
• Too much positivity
• “Pity” – not enough positivity, hope
• Shying away
• “Let me know how I can help”
• Not enough support… Too much support
• Not knowing what to say

Be Gentle with Yourself

• It can be difficult to talk about the diagnosis: 
  • Implies you need to understand it first
  • Reminder of the reality of it
  • Fear of “burdening” or “worrying” people
• Sometimes you might get sick of talking about it
• Sometimes you may wish people talked about it more!
• Reminder: there is no right or wrong way to talk about it

Giving Yourself Permission

• To feel overwhelmed
• To feel vulnerable
• To feel sad, anxious, existential, hopeful, gratitude
• To say you don’t have all of the answers
• To not understand what it means to “accept” the diagnosis

Family Dynamics = Complicated

• Emotional responses
• The relationship you had before the diagnosis
• Communication patterns
• Understanding of the disease
• Where people live
• Other roles and responsibilities
• How people approach challenges
• Perspectives on care decisions
• COVID!

Staying Connected

• Validate for yourself and everyone: this disease (and role changes) impact everyone. Giving and receiving help does not always come easy.
• Carve in time when you can feel like equals. Reverse the care role. Your life is more than the diagnosis.
• Check-ins
• Advocate for your needs
• Healthcare advance directives can help!
• Express gratitude
• Keep an open dialogue over time

It Takes COURAGE

• To be vulnerable
• To navigate uncharted waters
• To advocate for yourself
• To show up for yourself

This is YOUR Story

• When you want to talk about it
• Who you want to discuss it with
• What you want to tell people about it
• You choose how to make meaning of your disease journey

“Manifesto of the Brave and Brokenhearted” by Brené Brown

There is no greater threat to the critics and cynics and fearmongers than those of us who are willing to fall because we have learned how to rise.

With skinned knees and bruised hearts; we choose owning our stories of struggle, over hiding, over hustling, over pretending.

When we deny our stories, they define us. When we run from struggle, we are never free. So we turn toward truth and look it in the eye. 

We will not be characters in our stories. Not villains, not victims, not even heroes.

We are the authors of our lives. We write our own daring endings.

We craft love from heartbreak, compassion from shame, grace from disappointment, courage from failure. 

Showing up is our power. Story is our way home. Truth is our song. We are the brave and brokenhearted. We are rising strong.