4 surprising insights into life with Parkinson’s Disease

Over 1 million Americans live with Parkinson’s disease (PD), and while some symptoms are easier to see, such as tremors, stiffness and slowness of movement, there are a range of harder-to-detect non-movement symptoms that can have an impact on daily life.

Recently, the Parkinson & Movement Disorder Alliance (PMDAlliance), a non-profit organization offering programming for those in the Parkinson’s disease community, surveyed over 650 people with PD as well as care partners to better understand how non-movement symptoms impact their lives and quality of life.

Here are some of their findings and insights:

 

1. Parkinson’s disease affects more than motor function. Every person with Parkinson’s disease may experience different symptoms, both motor and non-movement related.

In fact, nearly all (90 percent) of survey respondents experienced non-movement symptoms, such as:

• Sleep problems (84 percent)
• Cognitive challenges (75 percent)
• Anxiety (65 percent)
• Depression (55 percent)
• Hallucinations (41 percent)
• Delusions (24 percent)

 

2. Non-movement symptoms can be more challenging than motor symptoms. Of those who experienced, or reported that their loved one experienced, non-movement symptoms, 84 percent felt that they have a negative impact on quality of life, and about half rated them as more challenging or much more challenging to live with than movement symptoms.

In a survey question about their Parkinson’s experience, one care partner said, “I wish [other people] knew that Parkinson’s looks different in different people. My spouse’s motor symptoms are fairly well controlled, but his REM sleep disorder and dementia have made our lives incredibly challenging and exhausting.”

 

3. Daily living is impacted by hard-to-see symptoms. Parkinson’s disease changes how patients and their care partners think about the future and cope with day-to-day living.

In fact, non-movement symptoms negatively impacted the ability to:

• Sleep (84 percent)
• Plan for future events (76 percent)
• Socialize (71 percent)
• Make plans with family and friends (70 percent)
• Be intimate with their partner (68 percent)
• Complete household chores (68 percent)
• Run errands (67 percent)

When people with Parkinson’s experience non-movement symptoms, care partners are impacted, too. In fact, psychosis symptoms in patients with PD are a strong predictor of increased care partner burden, and those with hallucinations have a 2.5-fold greater risk for nursing home admission.

 

4. Reporting symptoms is crucial. Even though non-movement symptoms are common, they are rarely reported. For example, more than half of patients will experience hallucinations or delusions associated with Parkinson’s over the course of their disease, however, only 10-20 percent of patients and care partners voluntarily report these symptoms to their doctors.

It’s important to report all symptoms to a doctor (usually a neurologist), as there are many different treatment options to address both motor and non-movement symptoms.

“Those with Parkinson’s and their families are not alone. Talking to your doctor is just the start of getting support and treatment,” says Sarah Jones, CEO of PMDAlliance. “We urge the entire Parkinson’s community to continue initiating conversations about symptoms, especially the non-movement ones that greatly impact day-to-day living.”

New educational resources about the onset and impact of non-movement symptoms of Parkinson’s can be found by visiting Pmdalliance.org and MoretoParkinsons.com.

The survey was sponsored by ACADIA Pharmaceuticals Inc.

 

– Statepoint