Stealing Self-Worth: PD and Mental Health

Parkinson’s disease (PD) is a thief. I did not understand this when I was younger. Now, after losing two loved ones to PD, I do.

Shortly after my vibrant, sociable grandmother moved to an assisted living facility, she stopped leaving her house. The first time I visited her at her new home we walked across the parking lot to the local Braum’s – one of her favorite restaurants – to get ice cream. The next time I visited she refused to do the same. Instead, we had bowls of ice cream in her room and watched Elmer Gantry.

Later, I asked my mother about my grandmother's behavior. With a short chuckle, she said, “That’s just your gran. Probably didn’t want to be seen with her walker. Doesn’t want anyone to think she’s a burden.”

Losing sight of self-worth

And that’s exactly what it was. Once my grandmother’s illness became visible, she didn’t know how to cope. To her, she’d become a burden and an outcast. This is a thief of a different kind, and it deserves just as much attention as the theft of movement, independence, and bodily control.

Another loved one lived with Parkinson’s disease for many years, moving first from living at home to living in an independent living facility to finally living at an assisted living facility. When the time came that she needed even more help, she opted to pay for a dedicated nurse rather than moving (again) to a nursing home. As her level of care needs rose, we watched as her spirits sunk. And, in those final months, when she was alone in her room at night, she started falling.

She fell, time and again. Always in her room. Always when no one was there. And after a few instances, it became clear to those of us who loved her that she was doing it on purpose. Ultimately, it was those falls that led to her death.

Mental health awareness

Mental health doesn’t get a lot of attention in articles about Parkinson’s disease. This is understandable given the wake of physical devastation left in the disease’s path, but it does matter. And it’s something we need to talk about and address.

Depression is often comorbid with chronic illnesses. In some cases, depression may have come first. In many cases, however, the depression comes about as a result of the stresses of living with chronic illness. According to the National Institute of Mental Health, the changes in the brain caused by Parkinson’s disease may play a direct role in depression.

Signs of depression

Depression can affect people in different ways, but the most common symptoms include:

• A negative view of self
• Fatigue
• Problems with sleep
• A negative view of the personal world
• Loss of interest in activities and hobbies
• A negative view of the future
• Problems with appetite

Think you or a loved one is at risk or experiencing symptoms? These Mental Health Screening Tools may be useful.

Getting help

There are many mental health resources and treatments for the chronically ill. Cognitive behavioral therapy is an effective treatment for depression that can help people with chronic illnesses address and rectify negative viewpoints. Certain anti-depressant medications can help treat the chemical changes in the brain that lead to physical symptoms. Talk therapy also can be useful for working through the stresses and emotions associated with living with a long-term illness.

For help in finding treatment in the United States, reach out to the Anxiety and Depression Association of America, call Mental Health America at 1-800-273-TALK, or review options at MentalHealth.gov. For immediate assistance with severe depression and suicidal thoughts, please call the National Suicide Prevention Lifeline at 1-800-273-8255.