Progression of Parkinson's Disease

When I was diagnosed with Parkinson’s disease in 2020, I envisioned a future based upon what I had learned about Parkinson’s disease as a medical student over 20 years earlier. I remembered a diagram with sketches of the various stages of the disease, and I pictured my future as a constant downward decline with nothing I could do to change it.

Parkinson’s University

Thanks to all of the research and people with Parkinson’s disease sharing their stories and experiences we now know that people with Parkinson’s disease do have the power to alter the course of the disease.

I have taken the liberty to update the depressing graphic I had learned in medical school to what I see as how the disease progresses.

My graphic has the following stages:

Stage 0: Person has Parkinson’s disease but has not yet been diagnosed. This can be for 5-10 years. They probably are not exercising very much, may be a little overweight and are just living their life.

Stage 1: Person gets diagnosed with Parkinson’s disease. There is a period of the initial shock, and perhaps a time to grieve for their previous vision of what their future would be. During this time, we learn more about the disease, interact with others who have been living with this disease for years and learn that we need to get busy exercising.

We start to exercise and to set some goals. We achieve those goals and set even bigger goals again and again.

Stage 2: After continuing to set bigger and bigger goals we are able to get into the best physical shape of our lives. We are well managed on our medications, we are exercising regularly and we are continuing to stay active and setting bigger and bigger goals. This is a photo of me at Ironman 70.3 Chattanooga in May, 2023.

Stage 3: We continue to exercise but as we age and the disease slowly progresses we get a little bit slower, but maintain a positive attitude and continue to set goals and exercise aggressively. This is a photo of Rhonda Foulds who has been living with PD for over 25 years and finished over 100 marathons, including Boston marathon 10+ times.

Stage 4: We continue to age and progress, and we continue to exercise. We may need to modify the types of exercises we are able to do. We may need to walk instead of run, or ride the bike only inside on a trainer instead of both inside and outside, but we maintain a positive attitude and continue to be grateful for what we can do.

I plan to come back to this and add more details once I learn more about research being done in this area.