The classic stages of Parkinson’s disease I find are not at all helpful and give the impression that we are on a steady decline with no power to change it. This is simply not the case. I have updated the slides to mirror my experience.
Stage -1: The Years Before Diagnosis
Before a Parkinson’s Disease diagnosis, the changes can be subtle—but they’re there. A little more stiffness in the morning. A slight tremor that comes and goes. Maybe sleep is restless, handwriting is smaller, or one arm doesn’t swing quite like it used to. Fatigue lingers longer. Movements feel heavier, slower, but life carries on. Doctors might suggest stress, aging, or arthritis. Friends and family may not notice anything out of the ordinary. But inside, something feels “off”—though it’s hard to name. This stage can last 5 to 10 years, quietly building in the background, as the person adjusts without realizing they are already living with the early signs of Parkinson’s disease.
“This must be what getting older feels like.”
Introducing: Captain Twitchy McGrit – a fun loving guy learning to live with the challenges of Parkinson’s Disease.
Stage 0: The Diagnosis Shock ⚡
The symptoms progress to the point that we realize something is not right, and we get evaluated by a doctor. This stage can also last several years, especially those who do not fit the stereotype of an older white male.
The words “You have Parkinson’s disease” land like a punch. The imagination races to worst-case scenarios. This stage often includes grief, denial, fear, and overwhelming uncertainty.
💬 “Life as I knew it is over… what happens to me now?”
This is what I remember learning about the progression of Parkinson’s Disease in medical school. When I was diagnosed I pictured myself on this steady decline with no power to do anything about it.
Stage 1: The Turning Point 🔥
Connection changes everything—meeting others who are thriving with PD opens the door to hope. The realization sets in: I have some control.
Exercise begins. Goals are set. Mindset starts to shift. It was meeting and learning about others who have been living with this disease for years that helped me realize that I still have a great life ahead of me, and that I have the power to make the most of it.
💬 “Life is short, and I choose to make the most of it.”
Stage 2: The Rise 🚀
Milestones are hit. Confidence grows. New dreams take shape. This stage often includes inspiring others, building community, and becoming a voice of hope.
I found that as I grew stronger, I found joy not only in my accomplishments, but by sharing my story and encouraging others to do the same. Seeing others find hope and set goals also helps keep me on track, and is a great source of pride.
💬 “I am managing my symptoms, finding strength I didn’t know I had, and lighting the way for others.”
Stage 3: The Enduring Warrior 🛡️
Symptoms may progress, but so does inner strength. Goals shift, but joy remains. Life is still rich—maybe slower, but deeper. You’ve become the hero of your own story.
💬 “I’m in this for the long haul. I’m still laughing, still living, still learning.”
Stage 4: The Grace of Gratitude 💖
There may be falls. There may be more need for help. But there is still courage, connection, and fierce gratitude for what remains. This stage is not the end—it’s a new way of showing strength. We may need the help of a wingman to help us with daily activities and exercise.
💬 “Some days are hard. But I fight with grace, and I am so thankful for the people who lift me up.”
Note:
I think it is important to note that people do not go on a set path from Stage 1 to 2 to 3 to 4. In many cases, people can go from Stage 4 back to Stage 3 or Stage 2. 💬
People with Parkinson’s often move between these stages—both forward and backward.
Stage 4 photo is Rhonda Foulds in 2017 crossing the Boston finish line with help of a trusted wingman and demonstrating what Pisa Syndrome looks like. Stage 3 photo is Rhonda running Boston marathon in 2024.
