Everyday activities most of us take for granted are much harder for people managing Parkinson’s disease (PD).
Over one million Americans are diagnosed with PD (many more have the disease and do not recognize the symptoms). While some of the symptoms are easy to see and familiar, such as tremor, stiffness and slowness of movement, PD is more than motor symptoms.
Symptoms vary from person to person and can be hard to see on the outside, but often have a significant impact on the person with PD, their care partners, adult children and management of day-to-day life.
Luckily, many of these symptoms can be managed under the care of a movement disorder specialist-neurologist.
To understand the impact of non-movement symptoms, the PMDAlliance surveyed our community, including people with PD and care partners, adult children and other members of the movement disorder ecosystem™ to understand how symptoms that are harder to see -- such as sleep problems, anxiety, depression, hallucinations or delusions -- impact their lives and quality of life.
Parkinson’s Disease Is Complex
Only approximately 75 percent of people with PD have tremor (1), whereas our survey confirmed that 90 percent of respondents experienced non-movement symptoms, specifically:
- Sleep problems (84 percent)
- Cognitive challenges (75 percent)
- Anxiety (65 percent)
- Depression (55 percent)
- Hallucinations (41 percent)
- Delusions (24 percent)
Of those who experienced non-movement symptoms, 84 percent agreed that these symptoms had a negative impact on quality of life, and more than half (49 percent) rated them as more challenging or much more challenging to live with than movement symptoms. Many times, the non-movement symptoms are seen and identified more readily by the care partner or family member than the person with PD. It is because of this that we refer to PD as a “team sport.” No person with PD exists in a vacuum.
In an open-ended survey question about managing non-movement symptoms, one care partner (anonymously) 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.” (REM sleep disorder is a serious sleep issue that can be potentially dangerous and like many non-movement symptoms, often begins to appear long before any movement symptom).
These results and comments will help us better understand how we can continue to meet the needs and those of the Parkinson’s community. Raising awareness about the symptoms and impact can help people receive a diagnosis and applicable care plan earlier in the disease process.
Daily Living Impacted by Hard-to-See Symptoms
Non-movement symptoms impact both the person with PD and their care partner. Certainly, if the person with PD isn’t sleeping, their partner is likely awake, too. Or if the person with PD cannot be convinced that a hallucination they are seeing is not real, it can cause stress and frustration on both sides. PMDAlliance is focused on raising awareness about the symptoms and creating a space for open conversation – to normalize the experience for people and help them be emPowered!™ to advocate with their physician.
In our survey, everyday activities most of us take for granted are much harder for people managing PD. Non-movement symptoms negatively impacted:
- Ability to sleep (84 percent)
- Planning for future events (76 percent)
- Socializing (71 percent)
- Making plans with family and friends (70 percent)
- Being intimate with their partner (68 percent)
- Completing household chores (68 percent)
- Running errands (67 percent)
Even though non-movement symptoms are common, they are less rarely reported and treated. For example, more than 50 percent of people with PD will experience hallucinations or delusions (false beliefs) associated with PD.(2) However, very few people with Parkinson’s or their care partners (10-20 percent) actually report to their doctor that they are seeing images that no one else can perceive or believing in ideas that aren’t true, which can be a challenge when trying to diagnose the condition.(3) (4) (5)
One care partner shared with me recently, “I was recently reading my diary, and as I look back on his 20 years with PD, his delusions were the most painful for us.” Like many people, infidelity can be a common delusion. It is challenging to overcome and until we can help people understand that it is frequent occurrence among people who experience PD related delusions, it can help to take the sting away and depersonalize a challenging situation.
PD changes how people with Parkinson’s, care partners and adult children think about the future and cope with day-to-day living. We work in partnership to help people create a new normal and remember they are more than their disease!
There are many tremendous advances in medication options for people and more coming down the pipeline. While we do not have a cure, we need to live life today -- and there is much hope for addressing symptoms. They need the right “cocktail” specific to address their issues. Many motor and non-motor symptoms can be addressed, including hallucinations, delusions, sleep anxiety and depression commonly associated with PD.
If you are caring for someone experiencing symptoms associated with PD, you and your loved one are not alone. We are here with you -- we are here for you! Care partners are particularly attuned to how the disease is progressing in their loved one. It is vital to report all symptoms to their PD doctor (ideally a movement disorder specialist-neurologist). PMDAlliance has designed an emPowered!™ Tool that we provide to all attendees at out conferences and workshops to help advance the conversation with their physician.
To learn more about non-movement symptoms associated with PD, please visit the non-movement symptoms page at PMDAlliance.org and sign up for our practical, educational monthly e-newsletter.
About the survey:
The survey was conducted online with the PMDAlliance membership from March 19-March 31, 2018. A separate set of questions was asked to respondents who indicated that they or their loved one had experienced non-movement symptoms versus those who did not report the presence of non-movement symptoms. Seven hundred people started the survey, comprising 377 care partners of persons with PD, 286 people with PD, 10 non-care partners/family members of people with PD, and 27 others, with approximately 650 who moved on to the subsequent questions about non-movement related symptoms. Nearly 600 respondents completed the survey in full. As not all respondents answered every question, sample sizes may vary for each question. The survey was sponsored by ACADIA Pharmaceuticals Inc.
(1) Burton 2008
(2) Fenelon 2010
(3) Fenelon 2000
(4) Fenelon 2010
(5) Fenelon 2010
(6) Chaudhuri 2010
(7) Goetz 2006