Community Views: The Painful Truth About Parkinson’s

Parkinson’s disease is often a daily struggle, both for the person with the diagnosis and the loved ones providing care. It can be unpredictable, with life-altering symptoms that can feel cruel and heartbreaking.

To shed more light on what it is like to live with this disease, we reached out to followers of our Facebook page and asked community members to answer: “What is the painful truth about Parkinson’s?”

Nearly 50 people shared their experiences, and here is what was said.

“He just had another bad fall!”

From tremors to stiffness, Parkinson’s can take a hard physical toll on those living with the condition. Motor symptoms like compromised balance, freezing episodes, and moving at a slow pace also lead to falls in many people with Parkinson’s.

These symptoms can be troublesome to both watch and experience. While they may be hard to live with, being aware of and prepared for the motor symptoms of this disease can help you and your loved ones reduce the risk of injury.

“He just had another bad fall! Getting him a walker and walking sticks!”

“The nights he would try to get up, he would fall because his brain forgot he had Parkinson’s.”

“Watching my dad become helpless.”

It is challenging to witness the physical and mental decline of someone living with Parkinson’s. It is never easy to watch a loved one struggle, and it can be especially hard to watch a once independent parent or partner become someone who needs help with even the smallest tasks. While there are ways to help manage the disease, the progression of the condition can be a difficult thing to see.

“The hurtful thing for me as his wife is watching a man who was so healthy be reduced to a person who is almost helpless sometimes. My heart really does break.”

“Watching my dad become helpless.”

“Watching a strong woman become more like a frightened child.”

As Parkinson’s takes over the brain, it causes dementia in most people living with the condition. Fear, anxiety, and hallucinations may occur, which can be devastating and scary for both the person with the condition and their loved ones.

“The most frustrating and difficult part was watching a strong woman become more like a frightened child from the dementia that was caused by Parkinson’s.”

“My husband died of Parkinson’s.”

Every part of this disease is a struggle to accept, including the end. Although Parkinson’s itself does not cause death, symptoms related to the condition can. Knowing your loved one is at risk for fatal complications like pneumonia or falls can be stressful and fear-inducing. While Parkinson’s changes many years of your loved one’s life, it does not diminish the love and sense of loss that follows their passing.

“My husband died of Parkinson’s.”

“My dad was 73 years old and just passed away on June 4, 2020. He had Parkinson’s disease for 3 years. I miss him every day.”

“My mom just passed away from Parkinson’s.”

Thank you to everyone who openly shared their experiences with Parkinson’s disease. We are grateful for every member of this community.