If you’re treating Parkinson’s disease (PD) as solely a disorder of movement, you are missing a significant portion of what negatively affects outcomes. If that diagnosis of your treatment upsets you, good. It’s time we took a look at emotional IQ and how it impacts those you serve. As a care partner to a father who has lived with his poorly delivered PD diagnosis since 2001, I have seen and felt the effects of ignoring the whole person. In full disclosure, I also completed a PhD program at UNLV in Interdisciplinary Health Sciences in Dec. 2022, where I studied the effect of improvisation and storytelling on People with Parkinson's disease (PWPD) and run the 501(c)3 nonprofit organization, Yes, And...eXercise!
Let’s start here: The emotional and psychosocial elements of PD are at least, and much research suggests even greater, as big an issue for people with PD, their families and loved ones as the physical symptoms. Because of the chronic, degenerative nature of PD and its lack of a cure or disease-modifying therapies, doctors must set realistic and hopeful expectations. It is highly unlikely that the minimal training on delivering the diagnosis received in medical school prepared most for this challenge. The emerging literature on the psychosocial and emotional needs of PWPD from researchers such as Dr. Indu Subrammanian, Dr. Bradley McDaniels, and Dr. Soania Mathur is clear.
The question becomes how to help PWPD not only understand but also explore their own constantly shifting emotional and psychosocial challenges? The default answers tend to be Cognitive Behavioral Therapy (CBT) and support groups. While these may be effective for some, there are gaps in both interventions. For CBT:
Therapy, as a practice, has stigma for some, leading to general avoidance.
Its efficacy is highly subjective based on the relationship formed (or not) with the therapist and the skill of the therapist.
If the PWPD is in denial, which is very common, there's not much a therapist can do for them.
It’s difficult to get to a therapist for many as there is a shortage in the field.
Finally, it’s not always covered by insurance.
Support Groups are highly variable, too.
Many end up only focusing on the most difficult or acute issues, or they are offered in solely a lecture/presentation format.
Many participants report dropping out after a few visits because their needs are not being met or the groups are too negative.
Support means listening and helping the individual carve his or her path to living well and adapting to the unknown changes that will occur in the typically long journey that is PD. We all know the saying: "If you've met one person with Parkinson's, you've met one person with Parkinson's." Living with PD is a heroic journey and should be framed accordingly to empower the individual, their care partners, and family members with malleable, practical tools. As Dr. Bas Bloem wisely points out, doctors treating PWPD must move from God to Guide.
There is a new option to explore the emotional and psychosocial elements of PD in a safe and brave space: Day One is a unique, highly-engaging, evidence-based narrative exploration program that provides the opportunity for everyone in the PD community to explore, discover, and share their stories. This includes doctors who need help in connecting with their PWPD, delivering the diagnosis, and offering ongoing support. Knowing your story helps you be more compassionate with others.
Participants engage in an interactive 16-session online workshop that employs elements of Joseph Campbell's Hero's Journey as a framing device. The Day One program can be taken as an asynchronous course with instructive videos that can be accessed on any WiFi connected device.
As a longtime care partner for my father and now a researcher in this field, I hope you'll reach out to me to discuss how you can use these valuable tools to improve your connection with those you serve. Feel free to email me at: yesandexercise@gmail.com.
Thank you,
Robert Cochrane, PhD
CEO & Founder, Yes, And...eXercise!
a 501(c)3 nonprofit org.
This is life changing program that causes a person to look deep under the surface of the main PD problem. Down to the root of all your issues. Both physical and mental.
Unprocessed Trauma is a huge contributing factor that is often overlooked. Especially where women are concerned. We gal's are too often put through the ringer by doctors who do not wish to give a PD diagnosis. Or are unable to separate PD symptoms from all the other overlooked. Or otherwise miss diagnosed ailments women struggle with.
Day One creates a safe place where, regardless if you are a man or a woman, we are able to come together to cultivate new ideas. Share new experiences. And gain confidence…