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 it 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 in 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.
Really thoughtful and thought provoking post. Nicely done Grasshoppa!
What a great blog this was! I was recently referred by my neurologist to a movement disorder doctor for the DUOPA THERAPY pump. I noticed in the doctors notes that he had written “patient is in the advanced stages of Parkinson’s“. Now that I have, the DUOPA pump, and am no longer having all the fluctuations I was having, I think I’m back in the beginning stages of Parkinson’s! Go figure! I love all the comments. I love this blog. It is so comforting, it is so special to have all of you for friends! Thank you for making it possible, Allison!
What is the Doupa pump?
Fantastic! Like the box analogy as it makes perfect sense. Meow! 😸
I lead a Women’s Parkinson’s Support Group in the South Hills of Pittsburgh, PA. In our monthly newsletter we like to briefly highlight several ‘news briefs’ and include links to the articles. I think this would be so freeing to our members — may we include it and a link in our next newsletter? I always love your blogs, but this one is so calming and reassuring!
Norma, I would absolutely love it if you shared my blog! Thank you!
As usual, excellent article. Thanks Allison!
I say throw the box out. Sometimes I feel like they need to go way back to the beginning in describing and categorizing Parkinson’s.. We are all so different but there are similarities also. If they can get some well defined groupings figured out, maybe they can find reliable treatments for the different groups instead of throwing spaghetti at a. wall (which I think is how some are doing it).
Great blog Post Ally
Thank you Aunt LaLa!
and some of the similarities are things that you can only talk to a PWP about because if you don’t have PD, you can’t understand
Excellent article. I enjoyed reading it!
Hello,I´m from Brazil.
Fantastic text. Congratulations. I thinkl like your opinion.
Parkinson’s disease is very different from person to person.
Sorry for my English mistakes.
Hugs!
Romulo,
Hello to Brazil! Yesk, we are very unique Parkies… we all experience Parkinson’s differently. Thanks for the comment! Take care.
Two realities about Parkinson’s, the good thing is that it won’t kill you. The bad thing is it won’t kill you. We all will die of something else. There are no studies I know of that show the number of people that die at what stage and from what. So in that case we just like everyone else, we don’t have the ability to predict what tomorrow will bring. Live life to the fullest and rejoice in the moment!
Well said, Bob!
Sorry, I was distracted by the image of shipping songbird-killing cats to the Arctic. Stages would be helpful in determining care or assistance levels needed. Perhaps even which activities to start someone on at Rock Steady Boxing?
Dad,
That would definitely help decide which exercise they can do, but even furthermore, it can measure any improvement that a Parkie is getting from exercise.
You and your snowflakes lol. I have a ton of newly diagnosed people in my classes who ask me questions about where they are stage wise and what Parkinson’s is?
I tell them Parkinson’s is like cell phone reception. Not having it means you have 4 bars and can hear every conversation and the internet is working perfect. Parkinson’s is when you start losing bars until you have none left and have lost all reception but don’t worry about what bar you’re on, because you can stop the loss of bars and even get some of them back with exercise. It’s why what stage you’re in is pointless, because you can get better. I’ve seen it.
All this talk about bars is making me want a margarita. Can you hear me now? Good!
John, what a great analogy! It explains Parkinson’s in easy to understand terms.
Flattery will get you everywhere, my dear. I’m going to subscribe to your blog right now.
Good article! The rating scales are more for doctors and researchers rather than patient use, and a patient can have one score while on their medications and another when off. The most recent rating scale is the MDS-UPDRS and can be found here: https://www.movementdisorders.org/MDS-Files1/PDFs/Rating-Scales/MDS-UPDRS_English_FINAL_Updated_August2019.pdf
Kevin
Thank you Kevin!
I think it would hard to figure which stage. I’m going on 7 years since my diagnosis. I stopped working fall 2018 but still drive and able to go for ~a 4K walk occasionally (less than I would like).
Rog,
You’re going on a 4K walk? Good for you. Keep it up!
I’m 6 months into a diagnosis and I’ve never asked where I am, stages/progression/etc. The only information my doctor provided was there’ll likely be some medication after 2 years and some more after 5 years. Which I found mentally a comforting timeframe. I’m now wondering if I lack curiosity!
I guess different people handle it differently, the doctor’s read was probably correct that too much information would be anxiety inducing for me.. Sometimes less information really is better!
That’s so true Matt!
I don’t like being in a box!! It frightened me when I was diagnosed, as I had an aunt and sister with Parkinson’s also! So I could see first hand what was ahead!!! But I realized you must have a sense of humor instead of being depressed about having this disease. I experience at least 4 of the 5 stages in a day’s time most days. So I will live, laugh, and love as long as I breathe!!!
Great attitude Joanne!
When I first read this blog (late at night of course when I couldn’t sleep) I saw the first picture of the cat in a box and thought it looked like a Chinese takeaway box of fried rice. OMG I couldn’t stop laughing when thinking about being in a box especially since we had leftover Chinese food for dinner. I love this blog. I don’t think that was the intent but my eyes sometimes play tricks on me and I see things that are not always there.
Anyhowwwww, my movement disorder doctor told me when I first started going to her a few years ago when I asked her what stage my PD was at, that PD affects everyone differently and symptoms that will affect me will vary from others my age and having PD for as long as I had it. She had seen people go from stage to stage quickly while others seemed to stay at stage 1 for years before progressing. The best advice she gave me was to keep positive about this journey that I was about to undertake because no one will go through it exactly the way I will go through it. If my thinking will be “why does everything bad happen to me” then I will most likely have a lonely journey that will lead to early retirement, depression, etc. if I can do everything to keep a positive perspective then the scary roller coaster ride that I am on will not be so scary. Unfortunately I cannot control everything that my new buddy Parkie will drag me through but by remaining positive I can at least try to enjoy the ride.
Of course I don’t wear blinders when tied to the hip with Parkie, so I don’t end up in a ditch. I realize my limitations have and will continue to change but when I am too tired to drive or my foot is numb I enjoy when my daughters drive me to my dr appointment because I get to take them to lunch and to just talk..
As I move into #2 with my right hand slightly shaking, I am happy you put it into perspective for me. Others have said we may not advance beyond X as well, which is also a good point. The key is to live, love, and “be present” as you said.
Have a great day.
Thank you for your comment…Live, love and be present!
Stages of PD are irrelevant! I used to think knowledge was power but I increasingly wonder if a little knowledge is a dangerous thing for many of us. The primary thing about PD is that the progression cannot not be slowed in any way. It’s idiopathic and progressive and relentless with no new first line drugs for over 40 years! We all progress differently, we all have our unique batch of symptoms and we all juggle medication against side effects. What possible use to us is creating theoretical stages when none of us even knows when our illness started. I was DX 13 years ago with symptoms traceable back about 18 years and I don’t want any stage labels thank you. Drugs are sadly essential but the master key is distraction within the bounds of what our body will allow. Don’t indulge….distract!! Distraction= perky=discomfort easing. 🙂
That’s a great point! It takes years to get a diagnosis, not to mention the 80% threshold. https://www.parkinsonsinbalance.net/2013/04/80threshold-in-parkinsons-disease/ Thank you for sharing your point of view.
Such a informative narrative on the “so called stages.” My MD never mentioned stage to me. He did mention mild disease. I do not fall into one of the stages, as I have some from multiple stages. I would not give much validity to a set of stages that were created in ?1967. Instead of focusing on stages, I would prefer the focus was on finding a cause and cure.
I was told awhile back that I’m at stage 4…ok…so being assigned a number tells me what and helps me how?
AMAZINGLY enough I was the same the day after this was pronounced as I was the day before! Lol!
All the world is a stage……….and I’m leaving on the next one.
So does that mean you want to go into a box? Miss you Peter! Loving the beard!
This is one time that I do not want to be an overachiever and score a five. I prefer to be last.
Ha! Love it. No need to overachieve here!
A very, relevant article – especially for me! I know that when I got diagnosed one of the first things I read about was the 5 stages of PD, and of course my next thought was what stage I was in… And when it did move from my left side to my right, I almost panicked thinking “Ugh, now I am at stage 2, only 3 to go!!” Even now, I find myself wondering sometimes if I am moving closer to the next stage. But you’re right, we Parkies (myself especially) don’t need to be sitting around worrying about what stage we are in, or how far away from ‘the end’ we are (i.e. Stage 5 of the scale), because I know from experience that way of thinking only brings one down. Rather than concentrating on what we don’t have or can’t do, we/I need to concentrate on what we can do, and enjoy life as it’s given to us.
What really hit home was your comment on fluctuating – That is so true! These days things change so much for me day to day or even hour to hour. For instance, one morning I may be considered stage 3, and in the afternoon only stage 1 (or sometimes 0 if you count those rare but wonderful moments when the symptoms seem to almost go away completely!) Trying to lump ourselves into a certain category of such a complex and fluctuating disease is near to impossible. We’re all so different and our symptoms are different, we really don’t know what our ‘future’ will be!
So, a great post, Allison – I needed that! No box for me!! 🙂
No box for you Tom! My days are like being on a roller coaster… every hour can be different! Thanks for the comment!