[Webinar Recording] Helplessness and Hope in Parkinson’s

Helplessness & Hope in Parkinson's - Davis Phinney Foundation

In this webinar, Judy Long, a palliative care chaplain with UCSF’s Parkinson’s Disease Supportive Care Clinic and UCSF’s Symptom Management Service, talked about difficult emotions like grief and helplessness and how best to work with them. She shared several practices that I hope you find useful along your path.

You can watch the video below.

Some of the topics Judy touched on include:

  • The three components of resilience
  • How to manage difficult emotions in each moment
  • How to reframe and embrace helplessness
  • How to deal with the daily losses of living with Parkinson’s
  • How to embody constructive engagement
  • How to cultivate compassion-based practices to serve the self and others

Show Notes

Grounding

Grounding exercises force you to redirect your attention from an intense emotion to something more physical or concrete. One grounding exercise that has proven beneficial to many people with Parkinson’s focuses on a chair and the security it provides. 

  • Step One: While you’re sitting down, notice the physical sensation of the support of the chair beneath you or the floor beneath your feet. 
  • Step Two: Sustain your attention there for a few moments and breathe deeply. On the inhale, notice the sensation of the air entering your nostrils. On the exhale, notice the sensation of the support of the chair or floor. 
  • Step Three: Direct your attention to the heart area and, if it feels right to you, place your hand over your heart. 
  • Step Four: On the next inhale, notice the expansion of your chestOn the exhale, notice the relaxing of your chest. Imagine you are breathing directly into and out from your heart. 

When you do a grounding exercise like this, your brain “understands that your body feels secure, and your nervous system transitions out of the fight-or-flight reaction and into the resilience zone,” Judy says. 

Managing Difficult Emotions

  • Connection = relationships = emotions
  • Humans are unique in being able to notice emotions even while we’re feeling them 
  • Emotions have a shelf life if we don’t hold on to them
  • Emotions come in waves.  The shape of the waves differ according to our individual tendencies and the situation itself, but they still come in waves. They arise and then they recede
  • When emotions are at their strongest, emotions are said to be refractory, and our perception is gated, so we only notice what’s congruent with that emotion. It’s like wearing emotional blinders  
  • Emotions don’t last forever, even if we want them to
  • When we have a strong emotion, we are often flooded with adrenaline and cortisol 
  • The earlier you notice the start of strong emotion, the sooner you can interrupt the cycle of being flooded, so it can dissipate more readily
  • It’s helpful to understand that you may need to allow some time for the emotion and the associated adrenalin rush to dissipate
  • Noticing and silently naming an emotion in a curious/neutral voice provides cognitive perspective, so you can choose skillful actions
  • When you experience a positive emotion, see if you can memorize how it feels emotionally and how it feels in your body.  You can use that memory as a reference point you can return to in the future

Soften. Soothe. Allow.

One exercise that encourages you to notice and come to terms with your emotions is what Judy calls “Soften, Soothe, Allow,” in which you name your emotion and then turn your attention to your body to see if you notice any tightness associated with the emotion.  

  • Step One: Silently name the emotion you’re feeling in a curious, interested voiceOh, this is sadness.” “This is fear.” “This is worry.” “This is stress.” 
  • Step Two: Shift your focus to your body and ask yourself if you feel a place that feels tight or uncomfortable. 
  • Step Three: Direct and sustain your attention to that part of your body and silently repeat the word soften three times. 
  • Step FourExhale, place your hand on that part of your body, and silently repeat the word soothe three times. 
  • Step Five: After the next exhale, silently repeat the word allow three times, keeping in mind that you can allow the emotion to remain as long as it needs to and that eventually, it will pass. 

Helplessness Protocol – R.E.N.E.W.

This is a way to respond to helplessness to help you re-engage skillfully.

RECOGNIZE that you are feeling helpless. Notice your reaction when you feel this way. What do you do when you feel this feeling?  Overly activated? Resigned/defeated? Somewhere in between? 

EMBRACE and notice where you are on this barometer of relative helplessness rather than ignoring it and hoping it will go away.

NURTURE yourself by doing something to feed yourself when you’re feeling that way. Have some ‘go-to’ things in mind that work for you, such as recalling your intention, looking out the window at nature, walking around outside, drinking a cup of tea. 

EMBODY the experience by getting ready to engage in a way that is skillful. Ground yourself with a deep in breath followed by dropping into your body and noticing the support of the chair or floor

WEAVE a new story about how you intend to re-engage in a way you think will be helpful. This can be a great place to practice creating a positive intention for a specific situation. 

Practicing the R.E.N.E.W. Protocol

  1. Notice when you feel helpless and identify where you are on the spectrum
  2. Embrace the experience, the feeling
  3. Nurture yourself.
  4. Ground yourself in some way 
  5. Weave a new story

First, try it out in your imagination by remembering a time in the past when you felt helpless and then practice it when you experience moderate helplessness.  

Resilience 

To re-channel your energies on things that bring you hope, Judy also suggests an intentional shift in focus to the three components of resilience—positive intention (the things that give your life the most meaning); authentic connection (to your friends, family, community, and self); and sense of control and self-efficacy. When life throws a hurdle our way, she says, we can use these components to combat feelings of isolation, meaninglessness, and hopelessness that might arise.  

ADDITIONAL RESOURCES

Center for Mindful Self-Compassion
Compassion Institute
Resilience in the Face of Suffering
The mindfulness-based emotional balance workbook: An eight-week program for improved emotion regulation and resilience
The Wellness Journal
Healing through the dark emotions: The wisdom of grief, fear, and despair
Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s
The upside of stress: Why stress is good for you, and how to get good at it
Chronic sorrow: A living loss

This webinar is sponsored* by Kyowa Kirin.

*While the generous support of our sponsors makes our educational programs available,
their donations do not influence Davis Phinney Foundation content, perspective, or speaker selection.

WANT TO WATCH MORE WEBINARS ON HOW TO LIVE WELL WITH PARKINSON’S?

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