Uncategorized

Knowing Doc Parkinson Better

 

What I knew about Parkinson’s going into 2018, I know better coming out of the year.

Foremost, intense exercise—think Rock Steady Boxing—halts PD progression, even reverses the damage. Medications only stabilize. The right kind of very frequent and intense exercise heals. Research is clear about this.

Stress is a Parkie’s greatest foe. PD strains even strong marriages to breaking points. It’s the rare care partner who can fully understand the inner turmoil PD produces.

A Parkie couple in Georgia we know, separately, sought Struby’s and my advice about finding a marriage counselor. He did not think his wife “got” what PD was doing to him; she struggled with living with her ”changed” man. She wanted her old husband back. A funny and sad story at the same time.

PD education must be accompanied by personal action steps to make a real difference. The education/action duo is ground level work– Parkies fighting from foxhole to foxhole together. With the possible exception of the Davis Phinney Foundation, PD foundations operate thousands of feet above ground: seminars, podcasts, brochures, books, websites.

Theologian Richard Rohr famously writes that setbacks, such as PD, can be moments of intense passage to previously unimaged maturity. He calls it “Falling Upwards.” Hope springs from that falling.

PD robs many of us of executive functions, such as juggling tasks. For me that means one thing at a time, keeping matters simple.KISS principle.

Hopeis the crucial factor in facing the uncertainties of each day. Without it, self-pity and passivity grind down your capacity to go forward with passion and determination.

Laughter is an essential counter to PD’s absurdities. Lose the car keys again and again. Laughing beats crying.

You are not alone in your struggle. The small community of fellow Parkies, your Tribe, lifts you with their resilience and determination to live well with Parkinson’s. The larger community provides the support you need.

Your health care professionals must work as a team on your behalf, not individually, for best results.

Deepening Faith in a higher power points you in the right direction in your journey. Listen carefully to that small voice in your head.

The inertia and inward focus of large health care organizations often hinders innovation in PD patient care. Small and flexible is better.

 Radical Candor (Barbara Bush remembered) cuts through the usual pleasantries and evasions in our lives. Tell the truth, however disruptive, always.Make Good Trouble on behalf of your Parkie Community.