Community Views: What Are Some of the Hardest Parkinson’s Symptoms to Manage?
It is easy to get caught up in the game of ‘If only...’ - as in, if only things were a little different. With Parkinson’s, it makes sense that anyone with the diagnosis would think about what life would be like without certain aspects, and 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 us 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.
“The 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, is certainly one of the most heartbreaking aspects of Parkinson’s.
“The hallucinations and dementia, and returning to a 2nd childhood.”
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.
What can be especially hard to accept is that tremor occurs most commonly when the body is at rest, so it can be hard to relax and have a break from the disease. Tremor is most common in the fingers, then 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.”
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—hindering the body’s ability to produce dopamine, norepinephrine, and serotonin. These chemicals determine mood, energy, and motivation, leaving many in a state of depression, which can be treated, but is certainly a struggle to live with.
“I would have to say anxiety and 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.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?