Parkinson’s disease is such a complicated illness. There are many layers to it, which can make it difficult to fully understand. But it can be comforting to know what the future will bring. We believe that with our knowledge of the disorder, we can have some level of control on how it will impact our bodies and mind. With the hope to know how fast our PD is progressing, some Parkies will look to the 5 stages of Parkinson’s scale, but how helpful is this method?
There are few tools to collect data to help diagnose Parkinson’s disease and even less when determining its severity. The Hoehn and Yahr scale grew in popularity when it was published in 1967. It detailed criteria to determine in which of the 5 stages a Parkie would fall into. It looks like this:
Stage 1: Unilateral, with mild functional impairment.
Stage 2: Bilateral or midline, without impairment of balance.
Stage 3: Mild to moderate bilateral, some postural instability.
Stage 4: Severe disability, able to walk or stand unassisted.
Stage 5: Wheel-chair bound or bedridden unless aided.
While many people know about the 5 stages of Parkinson’s disease…is that a true measure of someone’s illness? I don’t believe so. Why do you ask? Let’s look at the limitations that come with using the stages…
– It was created at a time when we didn’t fully understand Parkinson’s like we do today. We know now that PD is more than just a movement disorder, it can be accompanied by a slew of non-motor issues, that aren’t taken into account with the stages.
-No one wants to be put in a box… unless you are a cat… they love boxes. It doesn’t help us to understand our Parkinson’s if we are just tossed into a category.
-There is a stigma that comes with knowing that you’re in a certain stage. For example, when you hear stage 4-breast cancer, you know that the outcome is bleak. When we use stages when detailing Parkinson’s, it can cause unnecessary stress because of the attitudes associated with other illnesses that utilize the stages.
-Using The Hoehn and Yahr scale isn’t helpful for our Neurologists when determining which treatment to use, or predicting the progression of your Parkinson’s.
-What is considered “mild” might be “severe” to another. Parkies all have different levels of tolerance and coping mechanisms. We are all unique… just like snowflakes. These stages don’t look at variations of symptoms as reported from the Parkie.
-Some Parkies may fit into more than one stage. Maybe you have a severe tremor, that limits your ability to feed yourself, but your balance is only mildly impaired. Now instead of fitting into a box, you divided into 2 smaller boxes… hopefully they’re little blue jewelry boxes tied with a white ribbon bow. Now that’s a box I wouldn’t mind getting tossed into!
-The stages also don’t measure the difference of symptoms throughout the day. Every hour can bring an assortment of the wondrous forms of Parkinson’s. Maybe in the morning, you are rigid, but by lunchtime, you have crazy dyskinesia. The scale won’t account for those variations.
Now that we have gone through a few of the drawbacks, we can decide if the Hoehn and Yahr 5 stages are really pointless. Not necessarily. Using the scale can be useful when doing research. The stages give a broad definition of what category a participant fits into… which can be helpful when trying to establish the validity of the study.
If you’re determined to identify what box you fit into… meow… I would recommend looking into the Unified Parkinson’s disease rating scale (UPDRS), which is a standardized scale, created by Dr. Stanley Fahn in 1984. The UPDRS scale consists of 6 sections of symptomology, which the Parkie can rate 0-4 (normal to severely affected). This scale does include motor and non-motor issues, while also looking at the fluctuations in the Parkie’s daily life.
So what does this all mean? I think we need to stop worrying about what “stage” we’re in and just be present with ourselves. Spend your energy on how to enjoy life, not wasting it on things that you cannot change or fear of what the future might hold. Whether you are in Stage 2 or Stage 3, that number doesn’t define you as a person. In conclusion to the Perky Parkie belief system…. unless you’re a cat, let’s stay away from putting ourselves in a box.