Community Views: The Hardest Part of Living with Parkinson’s

Rarely is there an easy day with Parkinson’s. Even on the good days, the person living with the diagnosis and their loved ones may still be facing the fear of what might lie ahead.

It is a tough diagnosis to endure. To hear more about the biggest challenges of living with Parkinson’s, we reached out on the ParkinsonsDisease.net Facebook page and asked you to complete the sentence: “The hardest thing about living with PD is _______.”

More than 150 of you responded. Here is what you shared.

“Tripping and spilling …”

The loss of motor skills, balance, and coordination can be one of the most frustrating aspects of living with Parkinson’s. The good news is that there are ways to slow down the loss of these abilities. Yoga, tai chi, and Rock Steady boxing are all good choices to rebuild muscles and retrain the mental-physical connections in the body.

“Tripping, spilling, losing the ability to balance, freezing, having stiff muscles and cramping muscles.”

“So far, dropping things, tripping over nothing, and suddenly freezing when a leg will not cooperate. Also, choking on air.”

“Not knowing from one day to the next how I am going to feel.”

Even among people who do not have Parkinson’s, it is commonly believed that every body is different every day, affected by so many factors—from how much sleep we got, to how stressed we are, to how much we hydrated the day before. Granted, living with Parkinson’s means that the swings between the good days and bad days can be much bigger. Even during the day, it can be common for some people to feel their best just after waking from a full night of sleep and then they struggle the most at the end of the day, when energy is lowest.

“Not knowing from one day to the next how I am going to feel. So difficult to plan ahead, except for doctor visits!”

“The uncertainty. Every day brings a new challenge.”

“The hardest part is seeing the disease take the husband I have known away from me.”

Many of you in the community are caregivers and you have had to deal with watching your loved one struggle with this disease. The good part of this is that this shows how much you love your partner in that you are so affected by their struggle. For them, it can be a comfort to know that someone sees their pain and struggle. For many of us, our greatest desire in life is to be seen, so to have someone truly see us—even if it is during a low point—is still such a gift.

“Watching my mom go through this for 23 years. She kept going until pneumonia got her. She was a very active woman until Parkinson’s took over. It is a sad, sad disease.”

“The hardest part is seeing the disease take the husband I have known away from me. He is now wheelchair-bound and has dementia, delusions and hallucinations.”

“The hardest thing is seeing my husband struggle with the simplest things, such as putting on his socks. It is also hard to not see that smile on his face. It is hard to see him lose his balance and fall over, or to hear him apologize for not being able to do things for himself anymore. He was a jogger and loved to mow the yard, but those things have not happened in a long time. Seeing him giving up that is the hardest thing for me.”

We want to say thank you to everyone in the community who shared so vulnerably. It is our hope that anyone reading your words feels less alone in the struggle with Parkinson’s.

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