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Cancer’s lessons for Parkinson’s combatants

My wife Struby Thelen is knocking the piss out of breast cancer. Her wide network of survivors includes Desiree Rawlinson. Rawlinson has written remarkably about her journey. Her lessons learned fit hand in glove with the travails of Parkinson’s combatants. They follow.

I was diagnosed with breast cancer on July 16th 2018. Here is what I have learned since then:

  1. Cancer is a wicked bitch. She does not discriminate. Young or old; male or female; she simply does not care.
    2. There is no cure. You can be in remission, but without scientific breakthroughs, you will never be able to say “I am cancer free”.
    3. The you that you were before cancer is gone, she no longer exists. Cancer changes you, physically, mentally, emotionally. Finding your “new normal” is a battle all its own.
    4. Take care of your body, it’s the only one you get. If something seems off, get it checked out.
    5. Advocate for yourself!!!
    6. Cancer is cancer. It does not matter what stage or what type. One is not less than another. We all have our own fight.
    7. You are never alone. There are literally thousands of people around you fighting a battle similar to yours! Cancer is definitely not a group anyone wants to join but there is so much support from those fighting this disease. Ask questions! Reach out! You do not have to walk this path alone.
    8. Let the little stuff go – for real. It doesn’t matter at all, I promise.
    9. Life changes on a dime. Cherish each day, they are precious and few.
    10. Assume that everyone you meet is battling something just as big and scary as you. You have no idea what someone is going through and no one should have to tell their story to be treated with kindness.
    11. You are stronger than you know.
    12. Never give up.

Love to you all and thank you for being a part of my journey.

 

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Stronger Together

I was looking forward to, and fully prepared, for our Parkinson’s potluck lunch the first Saturday in November. Or so I thought.

Unanticipated was the ginormous emotional openness and laughter that would fill every room in the gracious home on Stanislaus Circle in mid Macon.

I had expected camaraderie. Huge waves of affection among the Parkinson’s Fighters, not so much.

The 40-plus men and women represented a large slice of the organized Parkinson’s Community in Middle Georgia.

There was Sarge, the taciturn and very tough Army vet from Perry, holding court in the dining room.

In the living room, Fred and Mary Ann energetically introduced a newly diagnosed friend, their local newspaper editor in Fort Valley.

The lawyers’ caucus exchanged notes in the breakfast room about downsizing from their large homes.

The Rock Steady boxers made merry around the pool, punctuated by the bark of Sam’s signature laugh.

Those defiant people proved again the under-appreciated power of social connections to combat chronic disease and extend full lives.

The Community had reason to celebrate. They had moved the PD equivalent of small mountains in 2019.

Foremost was the breakthrough distribution of 1,800-plus copies of my and Struby’s book “Counterpunch” to over 360 frontline medical practices throughout Georgia connected to Mercer University School of Medicine.

A $10,000 grant from the Peyton Anderson Foundation of Macon made possible that unprecedented information outreach to Parkinson’s patients, new and existing.

A close second was the astonishing enlistment for the new Rock Steady Boxing affiliate in Middle Georgia. Forty-two boxers and care partners are active enrollees, the vast majority coming from our Parkinson’s education and engagement programs. Rock Steady is the proven, premiere, exercise therapy program for Parkinson’s.

The pioneering, ground-level work of my foundation (Me Over PD) is especially important with the projected flood of new PD cases – just as the number of top-shelf, PD experts is declining precipitously (none in Middle Georgia). PD experts are warning this mismatch of demand and supply is a “Perfect Storm” and a “Pandemic” in the making.

The PD Community’s planned work for 2020 includes resuming Study/Action training when feasible, increasing the frequency of the potluck reunions, meeting again with Mercer Medical students and continuing to make “Counterpunch” available to medical offices working with Mercer and beyond in Georgia.