Parkinson's Disease

Gearing Up PD SELF

 

I share a letter I wrote to enrollees in our upcoming training program for recently diagnosed Parkies, PD SELF. It employs principles of self efficacy to assist PWP engage their condition and manage it more effectively.

 

My thinking behind the letter was to stay in contact and start building the culture we want to govern the group: openness, honesty, vulnerability, engagement, purpose-driven, fearlessness.

 

Here’s the letter, slightly edited for relevance and privacy:

Pd Selfers:

 

We suit up in the great cause of owning our condition (not vice versa) in just over a month. The golden ring is you assembling and captaining your own PD care team.  Sherry and I hope you will accomplish that during and after our months together.

 

I have invited all members of my growing care team to join the launch party ‪Aug. 27.  It is my privilege to present: My always available internist and team quarterback Lucy Guerra; MDS and artist-in-residence Juan Sanchez-Ramos; Rock Steady RTs Jordan Whittemore and Tara Schwartz;  speech therapist Cara Bryan (who says she forgives me for going to a school nine miles distant from UNC); spiritual guide and liberated persona Justin LaRosa (our meeting place host and director of The Portico, my church home.)

 

I am inordinately proud of my all-star team. They are practitioners of their callings at the highest level.  They are professionals but also craftsmen(bi-gender word) in the very best sense of painstaking performance, always.

 

Please locate them at the party (name tags will help you find them.) Don’t be shy. Ask them any question, seek referral advice…….and pump them for dish on me and Sherry.

 

Committed Selfers now number 10, and we hope to grow our numbers this month. Our ranks include a not-so-retired dentist, a no-word-muted dynamo, and a woman with names galore who has rarely encountered a worthy cause or person she has not helped.

At the party you will also meet several veteran Parkie couples whose mental strength and resiIience I so much admire. They are Gerard and Valerie Herrero and Ron and Dori Ingersoll.

 

In coming weeks, we will ask you to write about yourself for the benefit of other group members. There will also be some advance reading we will ask you to do to get off to a fast start in September.

 

Everything Sherry and I have learned about each of you gives us great confidence the program will be a huge success.

 

Care Partners are crucial ingredients in the SELF program. They learn and grow in knowledge and commitment alongside you. Denial, acceptance, hope, journey planning, plus many more joint issues, are important ingredients of the health stew we create together.

 

 

 

 

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