May 21, 2021
Last year, I unceremoniously collided with the greatest irony of my ongoing 30 year career/mission as an Indian elder advocate. The day before my 74th birthday, the director of a local cognitive assessment center called me into her office to explain her unexpected diagnosis of PSP—progressive nuclear palsy.
It’s a terminal neurological disease, loosely related to Parkinson’s or Huntington disease.
Overall, it’s kind of like winning the lottery in reverse—it affects only five out of every 100,000 people. Causes are unknown, but may include genetics . . . although there’s no verified link. It has to do with damaged tau proteins in the brain.
A primary symptom is frequently the loss of executive function (Ruh Roh!). At the time of the diagnosis, I felt a bit overwhelmed by the irony. IA2 is among the first Native organizations to engage in national work to recognize and cope with Alzheimer’s disease and other dementia (ADRD), and then earned the CDC grant that now brings our prestigious Advisory Group together.
Symptoms also include imbalance (I was/am having plenty of that). This has been a long time in the making–a formerly-avid bicyclist, l remember, on a guided mountain bike adventure in Nepal 18 years ago, inexplicably losing my balance and falling off of a steep cliff side trail. There were other incidents.
“Even though it’s progressive,” she explained, “you’ve probably got 8-10 good years left.” So here I sit, a year into this new adventure, internally questioning what “8-10 good years” means.
Will I miss scheduled meetings? Lose my train of thought while presenting at a conference? Break my ankle while walking to the bathroom? Get lost while driving to an appointment? Become wheelchair dependent? Jeez!
The doubts are constant and troubling. They’ve led me to take closer control of my options—re-financing my house, exploring in-home care, should it become necessary, and updating my will and advance directives.
Interestingly, my personal circumstances haven’t seemingly affected my work with ADRD. I’m very appreciative for being able to continue to contribute to our ongoing efforts to help American Indians and Alaska Natives address ADRD within their communities and families. The issue is top-of-the-ladder for many of my generation, and will become even more central as time progresses. Our mission is important.
I’m keenly aware that many of you—my colleagues and friends—have, and continue to experience far greater health issues and difficulties than me. I admire your courage and dedication to our work together.
And I’m constantly reminded that many of the folks we serve—Indian elders—face far greater obstacles than I ever have.
I’m convinced that the best solution for me—perhaps for all of us—is actually pretty simple–to stay positive and to keep trying. So I’ll offer up my best to you, and to Indian elders, as we continue our important work together.