A Day in the Life of a Parkinson’s Ambassador: Patti Burnett

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Our Davis Phinney Foundation Ambassadors are at the heart of our organization. They are our fearless leaders dedicated to living well today, who use their knowledge, passion, and experience to support others going through a Parkinson’s journey. Each Monday during Parkinson’s Awareness Month, we will highlight a “Day in the Life” of one of our amazing Ambassadors. This week, we are happy to feature Patti Burnett. Here is “a day in her life,” in her own words:

Today, on vacation in Moab, my husband, Dan, and I mountain biked the Bar M Loop, a beginner trail with scattered, difficult ups and downs, through sand and over rocks, but without any dangerous, steep switchbacks that so challenge my balance and courage. As I biked along, I had some time to reflect as I relished the amazing scenery of Arches National Park. Here’s what came to mind: 

I grew up in a family of eight, with four brothers. Constantly trying to meet my father’s approval, I found myself competing with my male siblings as well as the boys at the local skating rink and ski resort. I became the first girl in my school district to compete on the boys’ interscholastic ski team. I supervised a ski patrol in the 80’s, 90’s and early 2000’s, working in an extremely male-dominated environment. I have always taken the approach that if it’s possible, I can meet most challenges. However, in May 2013, everything changed.

I learned that I had Parkinson’s, and I seriously questioned whether I could accept this hand I had been dealt.

For the first time in my life, I doubted God’s goodness or omnipotence. I lost all confidence in my ability to meet my responsibilities as a wife, mother, grandmother, and friend. 

Patti Burnett and familyOthers also questioned my abilities. Some people with Parkinson’s told me I would not be able to walk after a while, let alone ski, skate, bike, and run. A Movement Disorders Specialist PA told me that my various methods of CAM (Complementary Alternative Medicine) therapies were a waste of time; did I not realize that Parkinson’s is a progressive neurological disease – that I would continually lose more and more function in every system of my body? 

Well, the challenge was on. I gritted my teeth and looked at Parkinson’s from every angle, with the goal of exposing Parkinson’s weaknesses.

I found that through better nutrition, it was possible to improve my gut function, which improved my digestive processes. I discovered that through cross-country skiing, hiking, and running, I was able to improve my arm swing and gait. I learned that through multiple types of exercise (yoga, aerobics, high intensity intervals, weights, spinning, skiing, snowshoeing, running, hiking, stretching), I was able to keep my brain alert. 

I ran into a rather large hiccup from August 2019 to April 2020 that seriously impacted my training regimen. I was hit by a number of major accidents and illnesses: 

  1. In August of 2019, I tripped while hiking and fell onto the handle of my hiking pole, breaking multiple ribs and puncturing my left lung, which resulted in a pneumothorax. Under the leadership of my husband, who was the on-call search and rescue mission coordinator, I was evacuated from the back country, and a surgeon placed a number of plates and screws in my ribs to stabilize them. 
  2. In September of 2019, I fell while trail running and broke my nose. 
  3. In October of 2019, I was standing on a swivel chair while trying to reach some Christmas decorations and fell, badly fracturing my left wrist. Again, plates and screws were implanted. 
  4. In March of 2020, I became extremely ill and was experiencing covidlike symptoms. An appointment resulted in a negative result for covid, but I was immediately admitted to St. Joseph’s where, after many tests, I was found to have Pneumonia, fluid on my diaphragm, and two large, infected cysts, the size of baseballs, in my left kidney. A decortication resulted in my maintaining 70% function in that kidney. 
  5. The spring of 2020, I was diagnosed with osteoporosis, despite a bone scan I’d had just a few years earlier indicating very strong, healthy bones. 

A reasonable person might begin to wonder if they should be allowed outside unsupervised. My husband feared every time I did anything remotely risky that he’d get a call from one of a nearby emergency room.  

You might be wondering what this has to do with my family vacation in Moab, UT, perhaps the Mountain Biking Mecca of the United States (perhaps even the world). Before we arrived, everyone assumed that I would not participate in the mountain biking activities. A few days later, I asked about a trail that my sons-in-law and daughters had biked, wondering if it was easier than an intermediate trail they’d biked the day before. “Oh, yes!” they said. Perhaps I could bike it, then? “Oh, no!” they said. I was hurt. Maybe even brokenhearted. 

I broached this topic again the following night, the last night of our vacation. I wondered if everyone was losing confidence in my abilities.

Would everything be taken away from me, little by little? Would everything in my life become smaller? My voice, my steps, my thoughts, my plans, my life, my God? 

Last Christmas, my sister’s gift to me was a sweatshirt that features a female ski racer running gates. “Underestimate me,” it reads. That’ll be fun.” It’s not a sweatshirt I would have purchased for myself, but my sister knows me well.  

I am not one to be underestimated, and least of all by myself. Today, I know that I am still Patti Burnett. I still love my family and friends. I still love God. I still can ski your pants off. Of Colorado’s 54 14,000’ peaks, I still have 14 to complete, and I am challenging myself to climb those 14 14ers in 14 months, from July 2021 until September 2022.  

Today, and tomorrow, I do not, and will not, allow challenges to get the best of me.

Want to get to know more of our ambassadors?

Each year, our Ambassadors speak with thousands of individuals and families looking for support and community to help them live well with Parkinson’s. Ambassadors are available to speak with you through email, phone, video conference, and in-person. You can look to connect with an Ambassador in your area or reach out to anyone who you think you would connect well with, regardless of location. Learn more and connect here.

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