How I approach thinking about the late stages of Parkinson’s disease

Balancing my desire to plan with my anxiety about what will happen

Mary Beth Skylis avatar

by Mary Beth Skylis |

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After my dad was diagnosed with Parkinson’s disease, one of the most frightening parts for me was learning about the later stages of the disease. Parkinson’s is a progressive disease, and it’s hard to think about how the symptoms will worsen over time.

Of course, not every patient’s experience is the same, but Parkinson’s can certainly become debilitating, stealing not only a person’s physical abilities, but also their sense of pride and happiness.

While the later stages of the disease isn’t a topic I love to think about, I do like to feel prepared, even if it means being a little uncomfortable. So I’ve learned a few things about what to expect as my dad’s Parkinson’s progresses.

In 1967, Margaret Hoehn and Melvin Yahr published the five stages of Parkinson’s, based on the levels of disability caused by the disease. According to the Parkinson’s Foundation, the first two stages are considered to be early, with mild symptoms that begin to worsen. Stage three marks the midstage, with loss of balance as a hallmark symptom. Stages four and five are the late stages of Parkinson’s, when symptoms are severely disabling.

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While Dad is currently in the midstage category, he’s definitely noticed physical changes and more extreme symptom complications. “As Parkinson’s progresses,” he recently told me, “you have to deal with new challenges. You lose your voice, or your voice becomes softer. You have to pee, and it’s more difficult to hold it. You fight fatigue quite often. It’s all hard.”

Stage five is characterized by the most extreme symptoms, such as increased stiffness and severe dyskinesia. It often requires the use of a wheelchair or similar mobility aid, the Parkinson’s Foundation says. Many patients in this stage require full-time caregivers, aids, or hospice care to provide as much comfort as possible.

Cognitive impairment is also common in late stages of the disease. That can make common tasks, such as correctly timing medication dosages, more difficult.

So does it benefit me to spend my time evaluating a potential future that my dad might experience as Parkinson’s progresses? The truth is that I don’t really know. In some ways, learning about potential outcomes makes me feel more educated and aware about some of the challenges we might face down the road.

But at some point, it also causes me anxiety. And I know that my dad doesn’t usually want to think about worst-case scenarios. So I try to keep this type of research mostly to myself. For now, I’m grateful that we’re not in the late stages yet.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.


Vicky Perry avatar

Vicky Perry

My Movement Disorder Specialist. (Neurologist) considers me to be in the fifth stage or end stage of the disease. I do not require wheel chair and am still able to walk on my own. If I miss one or two days of exercise, my symptoms increase dramatically. When suffering from from depression or lacking motivation, as I have for the last week, I am using a walker to get around. I have been diagnosed for 34 years. I have seen many of my online friends ass on to their next passage. Dr.
Abraham Lieberman was considered the expert when I was diagnosed.

Hazel Dianne Sellmer avatar

Hazel Dianne Sellmer

I don't understand specific changes that mean Stage 3, 4, or 5. I am at stage 3 (a year ago so maybe that has changed by now) and i need to always use a walker. I don't exercise as much as it am hearing from various youtube videos that i should. Most recent changes are that i am shouting out my frustrations more often and getting in trouble with people. And the earth seems to be moving under my feet; my description of balance issues during the past 6 months. Cognitive not too bad except my anger issues are getting more frequent and bothering people who aren't my favorite and i'm not their favorite either. No excuses! I tend to have a short fuse. Oh well i will carry on and do my best to stay out of trouble. I do enjoy most of life so i won't ask for the magic cyanide capsule just yet. i can still type to beat the band. But my handwriting is bad and i write one letter while thinking of another so writing is useless. But look at my typing, not bad at all.

Kathleen Karafonda avatar

Kathleen Karafonda



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