Community Views: What Are Some of the Hardest Parkinson’s Symptoms to Manage?
Last updated: May 2024
It is easy to get caught up in the game of "If only..." such as, "If only things were a little different." With Parkinson’s disease, it makes sense that anyone with the diagnosis would think about what life would be like without certain aspects. This is certainly a disease with many symptoms affecting the physical, mental, and emotional sides of everyday life.
To hear more about which symptom you struggle with the most, we reached out on the ParkinsonsDisease.net Facebook page and posed the question: “Let's say you have the ability to make one PD symptom disappear. Which do you choose?”
Nearly 70 community members weighed in. Here is what was shared.
Hallucinations and dementia
The number one answer is not the most common symptom that most people think of when they think of Parkinson’s. Along with the physical symptoms of Parkinson’s, many people with the diagnosis also experience psychosis, which begins with mild symptoms.
This mental side of Parkinson’s can start with confusion and progress to include hallucinations and dementia. The hallucinations, when coupled with dementia, are certainly one of the most heartbreaking aspects of Parkinson’s.
“The hallucinations and dementia, and returning to a second childhood.”
“Hallucinations/delusions.”
“Dementia/hallucinations.”
Dealing with tremor
Tremor, the symptom that everyone equates with Parkinson’s, was actually the second most common response to our question.
Many with Parkinson’s disease live with tremor, but people experience it very differently. For some, tremor is an annoyance that obviously obstructs quality of life, but it is not debilitating. For others, these shaky movements are simply intolerable.
It can be especially hard to accept that tremor occurs most commonly when the body is at rest, meaning it can be hard to relax and have a break from the disease. Tremor is most common in the fingers, followed by the hands, jaw, and feet. Tremor can also show up in the lips or even the tongue.
“There are so many, but I would choose tremors. Terrible!”
“Tremors. Awful. Tremors made everything more difficult.”
Experiencing dystonia
Separate from tremors, dystonia occurs when muscles contract involuntarily, often leaving someone stuck or trapped in an uncomfortable movement or posture.
Because the muscles are contracted when this happens, it tends to be quite painful. Curiously, dystonia can present as a Parkinson’s symptom or as a side effect of some of the medications that treat Parkinson's.
“Dystonia, hands down.”
“Dystonia pain. So tired of hurting.”
Anxiety and depression
Another side of Parkinson’s that is not talked about much is the mental health aspect.
For many people, Parkinson’s affects brain chemistry and hinders the body’s ability to produce dopamine, norepinephrine, and serotonin. These chemicals determine mood, energy, and motivation, leaving many in a state of depression. While depression can be treated, but is certainly a struggle to live with.
“I would have to say anxiety and depression.”
“Depression.”
We want to thank everyone who opened up and shared their experiences with Parkinson’s. We appreciate you being part of this community.
What is your most challenging Parkinson's symptom? Share in the comments below.
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