For most of us, it’s an easy decision to run to the supermarket if we’re out of milk. It doesn’t require planning or too much forethought. We grab the keys and go. Or when it comes to making plans with family or friends to grab a bite to eat or see a movie; we text or call to coordinate schedules and then meet up accordingly. However, for the over one million Americans living with Parkinson’s disease (PD)[i] and their care partners, deciding to leave the house for a few minutes or take part in daily life activities can be a tough decision. The challenge does not lie in managing the common motor symptoms of PD, which typically include slowness of movement, rigidity or tremor. These symptoms can often be well controlled with a treatment plan that includes medication, treatments and exercise. Rather, it is the lesser known non-movement symptoms that are harder to manage and create challenges in everyday living.
Errands and activities impacted by PD
While approximately 75 percent of people with Parkinson’s experience tremor [ii], according to a new survey of our members (which includes both people with Parkinson’s and care partners), 90 percent of respondents experienced non-movement symptoms, in particular sleep problems (84 percent), cognitive challenges (75 percent), anxiety (65 percent), depression (55 percent), hallucinations (41 percent) and delusions (24 percent). These non-movement symptoms of PD negatively impacted their ability to engage in routine activities many of us perform on a daily basis – such as the ability to sleep (84 percent), go to the movies (50 percent) or run errands (77 percent), plan for future events (77 percent), socialize (71 percent) or make plans with family and friends (70 percent).
Through our everyday conversations with people with Parkinson’s, care partners and various other members of the movement disorder ecosystem™, we routinely hear about the many aspects of PD. While we were aware of the impact it has on both people with Parkinson’s and their care partners, this survey illuminates the extent of how significantly these non-movement symptoms take a serious toll, with 84 percent responding that the symptoms had a negative impact on quality of life. Further, more than half rated them as more challenging or much more challenging to live with than movement symptoms (among those who experienced non-movement symptoms). These unseen challenges of the disease need better understanding and conversation. People impacted by Parkinson’s deserve to navigate the journey feeling empowered, educated and aware of what to expect from this progressive, neurodegenerative disease.[iii]
At PMDAlliance, our motto is first you, then the disease. This statement underscores that the most important part of living well with PD is focusing on the human experience – the everyday life experience. We know that if everyday life is easier, the disease is able to take a back seat and living well is in the forefront. To do that, it is important to address the non-motor symptoms with the physician and care team. It is possible to live well for years and even decades with PD.
Common, but underreported
Our survey revealed that people with Parkinson’s are less likely to identify the onset of non-movement symptoms than care partners (80 percent versus 91 percent, respectively). This supports what we know from scientific literature – that non-movement symptoms are less frequently reported to doctors. For example, over fifty percent of people with Parkinson’s will experience hallucinations or delusions over the course of their disease. However, only 10 to 20 percent of people with Parkinson’s actually report these symptoms to their doctor, possibly because they do not know that the experience of seeing or believing things that aren’t true can be attributed to PD or, maybe, because of the embarrassment that comes with reporting symptoms due to existing stigma associated with reporting them.[iv],[v],[vi],[vii] The same is true for anxiety, apathy, and depression. All of these symptoms are common, and if brought to the attention of the provider, may be addressed through an individualized medication, therapies and exercise plan.
We want to inspire people with Parkinson’s to take control of their health and initiate proactive communications with their care partner and doctors about symptoms they are experiencing. At PMDAlliance, we have incorporated educational resources on our website and created emPowered!™, a new tool that will help people with Parkinson’s enter and track their symptoms, medications and daily activities.
The emPowered!™ tool helps facilitate and continue improving communications between doctors and people with Parkinson’s, and ensure vital information on bothersome symptoms or changes since their last visit are at the forefront of discussions and on hand during appointments. Most importantly, many of the movement and non-movement symptoms identified as troublesome in our survey can be addressed – including sleep problems, anxiety, depression, hallucinations or delusions – so it is imperative to continue having an open and honest dialogue, and increasing awareness about these lesser known aspects of PD. The tool and training on how to use the tool is a core component of our community-based conferences. To learn about conferences near you, visit our website.
We are committed to improving the lives of people with Parkinson’s through education and support. We want to remind everyone in our community that they are not alone, and there are resources available to help you live well with PD. For more information about non-movement symptoms related to PD, https://www.pmdalliance.org/non-motor-symptoms-survey-authors/. We also offer a free e-newsletter that offers educational information that is published every month. Sign up for the newsletter when you visit our site.
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.
[i] Parkinson’s Foundation – Causes & Statistics. Available at httpss://parkinson.org/Understanding-Parkinsons/Causes-and-Statistics.
[ii] Burton R. Parkinson’s disease without tremor masquerading as mechanical back pain; a case report. J Can Chiropr Assoc. 2008 Aug; 52(3): 185–192.
[iii] Parkinson’s Foundation – What is Parkinson’s? Available at httpss://www.parkinson.org/understanding-parkinsons/what-is-parkinsons
[iv] Chadhuri KR, Prieto-Jurcynska C, Naidu Y, et al. The nondeclaration of nonmotor symptoms of Parkinson’s disease to health care professionals: an international study using the nonmotor symptoms questionnaire. Mov Disord. 2010;25(6):704-709.
[v] Fenelon G, Alves G. Epidemiology of psychosis in Parkinson’s disease. J Neurol Sci. 2010;12.
[vi] Fenelon G, Mahieux F, et al. Hallucinations in Parkinson’s disease. Prevalence, phenomenology and risk factors. Brain. 2000;736-738.
[vii] Goetz, Christopher, et al. The malignant course of ‘benign hallucinations’ in Parkinson disease. Arch Neurol. 2006;63(5)713-716.
Sarah Jones, MPA, MS
Sarah is the CEO of the PMDAlliance. With more than 25 years of experience leading non-profits and health care programs, Sarah is an energetic, visionary leader who is continually looking for opportunities to increase impact and solve unmet needs. Her expertise extends to creating dynamic work cultures, systemic transformations, and blending passion for mission with innovative, high-quality business models. Sarah has designed programs and led trainings for local, national and international audiences, including groups in Canada and Botswana. Driven by the belief that life is too short to just show up every day, she strives to create a world that we are excited to live in and be a part of.