What Are Some Nagging Concerns You Can’t Shake About Parkinson’s?

What Are Some Nagging Concerns You Can’t Shake About Parkinson’s?

Living with Parkinson’s disease can be a constant challenge. PD can affect so many aspects of a person’s daily life and overall well-being. One thing many with PD can attest to is that the condition often presents many nagging issues and concerns that weren’t expected nor anticipated. These challenges and concerns can contribute to the need for developing countless adjustments and lifestyle changes. We recently asked our community members, “What is the one nagging concern you can’t shake about Parkinson’s?”, and the responses we received were so varied and interesting. Read on below for a sampling of some of the thoughtful responses we received.

Movement and stiffness

As Parkinson’s disease progresses, so does its physical symptoms, condition-related concerns, and other adverse effects. Concerns with the ability to move were often cited by many of our community members. Changes in movement or stiffness, as well as the potential lack of movement was distressing for many.

“That I can’t keep moving.”
“The aching and stiffness that affects movement and stability.”
“During the “off times” when the medications wear off, I have muscle spasms and stiffness.”
“My overall movement and stability.”
“Eating food. My husband is at a stage where he chokes while eating. Most foods are liquefied for him and he still has a problem.”
“When my arms and legs get so stiff.”
“That I’ve slowed down.”
“My toes curling up.”
“I have continual spasms.”

Pain and fatigue

For some, living with the pain and fatigue of Parkinson’s disease is the most agonizing concern. Experiencing prolonged pain or fatigue that cannot be alleviated or that is inadequately alleviated can be exasperating for many, as well as lead to significant impacts to an individual’s quality of life.

“I’m in extreme pain.”
“The incredible fatigue.”
“The extreme pain of my calf muscle having continual spasms and my toes curling under.”
“Fatigue accompanies all my symptoms.”
“The side effects of the meds. I am sleepy and nod off easily.”
“The extreme fatigue.”
“The pain.”

Mental and emotional impact

Managing the emotional and mental toll of Parkinson’s disease was often reported as the most distressing concern for some of our community members. Coping with the physical changes that PD can bring, as well as dealing with other aspects of the condition, such as changes to an individual’s daily life, can be demanding, both emotionally and mentally.

“The off times make it so overwhelming to do normal everyday things.”
“I’m very sad and frustrated.”
“It’s not getting any better, so much for my golden years.”
“I’m so sad. I can no longer drive except for short trips close to home.”
“Thinking about what I used to be able to do.”
“That it is not going to get better, just worse, unless a cure is found.”
“I’m so scared.”
“I’m concerned about the future.”

It’s clear from all of the responses we received that there are many nagging concerns associated with Parkinson’s disease. These frustrating concerns can be physical, mental, or emotional in nature and can all play a part in what makes PD challenging to manage.

We would love to hear from you. What is your most nagging concern with Parkinson’s disease, and how do you try to cope with it?

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