Our guest blog post is by Gil Thelen, who is a Parkie, class of 2014. He is Executive Director, Florida Society of News Editors; a retired newspaper editor and publisher; and past founder of the PD SELF training program in Tampa. He is completing a book about his journey of discovery with PD titled “Counter Punch: Sparring With Parkinson’s. His website is https://shufflingeditor.com.
We “Parkies” never forget the date that we heard the words.
“You have Parkinson’s disease. Progressive and incurable. But it is treatable.”
Too often, the words that follow diagnosis are merely to fill a prescription and return in three months.
No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.
There is no system of care to enter if you have Parkinson’s. That’s the case unless your treatment is from an extremely small handful of highly specialized and patient-centered institutions.
It’s all on you. You live by your ingenuity and perseverance.
That grim lesson won’t stand for some fed-up Parkies. They are creating patient-centered approaches to management of their condition.
University of Colorado Neurologist Benzi Kluger is field-testing an umbrella organization that provides education, counseling and assistance to Parkies who want to write their own care plans. Test sites are Denver, San Francisco and Alberta.
PDF consultant Diane Cook is field-testing a different model. It lacks an umbrella organization but trains Parkies to become captains of their own health-care teams. Her program is PD SELF (Self-Efficacy Learning Forum). Reports are encouraging from the nine test sites finishing year one.
Here in Tampa Bay, committed members of PD SELF want to spread key lessons they’ve learned: You can counter punch PD and retake some lost ground of competence. You can live well despite PD.
Living well entails aggressive self-management, rigorous exercise, changed diet, mental conditioning and deep understanding of your condition.
I call the PD SELF veterans the “Special Ops” group. We are ready to share our experiences with newly diagnosed Parkies.
Our challenge is to find newly diagnosed Parkies and connect.
We are committed. We will find our way. We have so far.
– Thank for Gil, for your Parkinson’s voice. For more information, see PD SELF (Self-Efficacy Learning Forum). Another resource for the newly diagnosed is the 1-800-4PD-INFO helpline from the National Parkinson Foundation and their Newly Diagnosed resources. Also see A Practical Guide on Talking about Parkinson’s at Work from the Michael J. Fox Foundation.