Parkinson's Disease Stages: Understanding the Relevance

"What stage am I?" is one of the most common questions people ask about their Parkinson's disease. Whilst scales like Hoehn and Yahr are widely used by clinicians and researchers to

classify motor severity, it may not be the most helpful way for you to understand your own experience.

Some Staging Scales May Not Tell You Everything

Parkinson's progression is highly individual and may not always follow a strict motor symptom pattern. The Hoehn and Yahr scale Stage 1, for example, defines mild symptoms affecting only one side of the body. But you might experience symptoms on both sides, trunk involvement, or mood changes while still being early in your Parkinson's experience. This doesn’t necessarily mean you skip to the next few stages, as some rigid categories don't capture the full picture or account for this natural variability.

A Different Approach: Natural History

Instead of focusing only on staging scales, emPowereD uses the concept of "natural history" – how Parkinson's symptoms typically change over time based on extensive long-term studies. While Parkinson's progression varies greatly between individuals, motor difficulties tend to follow a predictable sequence. Knowing how long someone has had Parkinson's allows us to anticipate the types of challenges they may face. This natural history approach provides reasonable predictions about symptoms at different time points after diagnosis. As progression rates vary so much, we've organised information into overlapping time periods to still provide insight for individuals while still accounting for variability.

So how does this help you? Rather than classifying yourself into a stage based on symptoms you may intermittently feel, it can be more helpful to look at this in terms of how many years post diagnosis you are. You can then compare to the commonly seen issues in your time frame of PD, and access information more likely to reflect your lived experience.

Key Takeaways

• Staging systems serve research purposes better than personal understanding

• Individual variation is the norm – symptoms that affect some people may never appear in others

• Time since diagnosis provides more useful insight into management strategies and likely symptoms than rigid staging

• Your lived experience matters most – focus on how you're feeling and managing day-to-day rather than worrying about which "stage" you're in