Most Parkinson’s Patients Show Non-movement Symptoms Like Depression, Sleep Problems, Survey Finds

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• Parkinson’s Non-Motor Symptoms More Keenly Felt by Care Partners Than Patients, PMD Alliance Survey Finds August 8, 2019 An online survey by the nonprofit group PMD Alliance found that care partners are more likely to report Parkinson’s disease-related non-motor symptoms than are patients themselves, and to feel more affected by them. These responses underscore the need for better recognition and education about Parkinson’s non-motor symptoms, many of which significantly affect quality of life. A study based on the survey, “Impact…
• Impact of non-motor symptoms in Parkinson's disease: a PMDAlliance survey. September 10, 2019 Impact of non-motor symptoms in Parkinson's disease: a PMDAlliance survey. Neuropsychiatr Dis Treat. 2019;15:2205-2212 Authors: Hermanowicz N, Jones SA, Hauser RA Abstract Purpose: Parkinson's disease (PD) is associated with non-motor symptoms (NMS) that can cause progressive disability and impact quality of life of people with PD (PwP) and increase burden on care partners. This survey was designed to evaluate the…
• Difficulty in Diagnosis Greatly Affects Quality of Life of Parkinson’s Patients, Survey Finds June 20, 2017 People living with Parkinson’s disease are frustrated with the difficulty in getting an accurate diagnosis, a new Health Union survey found. The “Parkinson’s in America 2017″ survey, conducted online between Jan. 19 and March 13 of this year, includes responses from 1,100 Parkinson’s patients and was released through ParkinsonsDisease.net, Health Union’s newest online community for patients. An infographic series illustrating the survey results is available…
• PMDAlliance Will Share ’emPowered!’ to Improve Doctor-Patient Communications April 24, 2018 To make the most of the limited time Parkinson’s disease patients and physicians have during an office visit, the nonprofit Parkinson’s & Movement Disorder Alliance (PMDAlliance) has created emPowered!, a new tool for tracking symptoms and reporting them to healthcare providers. The booklet, in which patients will log information about medications and daily activities, for example, is  designed to help…
• Non-Motor Symptoms During Wearing-off Periods Associated with Worse Quality of Life in Parkinson’s Patients September 25, 2018 Parkinson’s patients with non-motor symptoms during “wearing-off” periods — when symptoms return as their medication wears off — have a significantly worse quality of life compared to patients who only experience the return of motor symptoms, a new study shows. The study, “Motor and non-motor wearing-off and its impact in the quality of life of patients with Parkinson’s disease,” was…
• Survey Shows Canadian Parkinson’s Community’s Key Concerns April 13, 2018 Long waits for diagnosis, limited access to specialized treatments and services, and out-of-pocket healthcare costs are among key concerns of Parkinson’s patients, caregivers, and medical-service providers, according to a Parkinson Canada survey. The organization created the 30-minute online survey to better understand the challenges that patients, caregivers, and providers face. It was conducted between Sept. 29 and Oct. 24, 2017. Fifty-seven…
• Survey Sheds Light on the Effects of Orthostatic Hypotension in Parkinson’s Patients October 11, 2018 Neurogenic orthostatic hypotension (nOH), a sudden drop in blood pressure when changing positions, can significantly affect Parkinson’s disease patients’ function and quality of life. A recent survey highlights the need for improved awareness and education on the effects and burden of this condition, which affects one in every five Parkinson’s patients. The survey was developed by Lundbeck in collaboration with The…
• Research survey assesses impact of holidays on Parkinson’s symptoms November 28, 2018 The Radboud University Medical Center, Netherlands, is seeking participants for an online survey assessing the effects of a holiday on Parkinson’s. The study will assess whether a vacation can have physical and mental benefits for people living with the condition. It will also look at which specific factors, such as temperature and physical activity, can alleviate or increase symptoms. The…
• 'Rallying to the Challenge' Initial Patient Survey Results July 4, 2017 Thank you to those who have already taken part in this survey sharing your views and priorities – so far you have told us:   Nearly 80% of responders reported that their key motor concern was slowness of movement however there was much more variety in the range on non-movement symptoms reported including 63% reporting sleep concerns, 63% reporting a…
• 'Rallying to the Challenge' Initial Patient Survey Results July 4, 2017 Thank you to those who have already taken part in this survey sharing your views and priorities – so far you have told us:   Nearly 80% of responders reported that their key motor concern was slowness of movement however there was much more variety in the range on non-movement symptoms reported including 63% reporting sleep concerns, 63% reporting a…
• Researchers Want to Know: How Does Parkinson’s Impact Your Finances October 16, 2018 As members of the Parkinson’s community know well, the disease often comes with increasing costs for patients, their families and care partners. While some of these expenses are tangible, such as insurance co-pays, others are more difficult to quantify, such as taking time off work. “The Economic Burden of Parkinson’s Disease” is a new study that seeks to capture more…
• Webinar Registration: Cognition and How It Relates to Other Non-Motor Symptoms with Dr. Jennifer G. Goldman October 17, 2019 Non-motor symptoms of Parkinson’s are common and to some degree affect most people living with Parkinson’s. These symptoms affect cognition, behavior, sleep, autonomic function and sensory function and may become more pronounced as Parkinson’s progresses, deeply impacting a person’s quality of life. In this webinar on Wednesday, October 30th at 9 am Pacific, Dr. Goldman will address: Causes of and management of…
• Become a Parkinson’s Care Advocate: Join Our Aware in Care Ambassador Pilot Program November 14, 2018 When hospitalized, three out of every four people with Parkinson’s disease (PD) do not receive their medications on time. Most develop serious complications as a result. In 2011, the Parkinson’s Foundation launched Aware in Care to help people with Parkinson’s get the best care possible during a hospital stay, and it worked. Surprisingly, 70% of hospital staff are still unaware of…
• Become a Parkinson’s Care Advocate: Join Our Aware in Care Ambassador Pilot Program November 14, 2018 When hospitalized, three out of every four people with Parkinson’s disease (PD) do not receive their medications on time. Most develop serious complications as a result. In 2011, the Parkinson’s Foundation launched Aware in Care to help people with Parkinson’s get the best care possible during a hospital stay, and it worked. Surprisingly, 70% of hospital staff are still unaware of…
• Merger of New Mexico Parkinson’s Coalition, PMDAlliance Expected to Improve Patient Services December 14, 2018 The recent merger of the New Mexico Parkinson’s Coalition (NMPC) and national nonprofit Parkinson & Movement Disorder Alliance (PMDAlliance) is expected to significantly boost support services for Parkinson’s patients in the New Mexico area, according to the organizations. “I’m a firm believer in mergers when the organizations share similar missions and are compatible in their purpose and goals,” Sarah Jones, CEO of…
• Researchers Want to Know: How Does Parkinson’s Impact Your Finances September 6, 2018 As members of the Parkinson’s community know well, the disease often comes with increasing costs for patients, their families and care partners. While some of these expenses are tangible, such as insurance co-pays, others are more difficult to quantify, such as taking time off work. “The Economic Burden of Parkinson’s Disease” is a new study that seeks to capture more…
• Center of Excellence Series: Rush University Medical Center Provides Critically Needed Parkinson’s Mental Health Program March 9, 2018 Most people associate Parkinson’s disease (PD) with tremors, a motor symptom. However, non-motor symptoms are common and can be more troublesome and disabling than motor symptoms. They can include cognitive changes, mood and sleep disorders, autonomic symptoms or weight loss. Rush University Medical Center, a Parkinson’s Foundation Center of Excellence, is not only on the front lines of PD-related cognitive…
• Off-periods and Work, Inbrija’s Ability to Keep Dyskinesia at Bay Among Studies at Congress September 23, 2019 Use of Inbrija (levodopa inhalation powder) helps to effectively manage off episodes in Parkinson’s disease without an increase in troublesome dyskinesia, or involuntary muscle movement, according to data being presented by Acorda Therapeutics at the International Congress of Parkinson’s Disease and Movement Disorders. Results from a separate study presented at the meeting, running in France through Sept. 26, show off episodes can…
• Creating Community August 30, 2018 Creating community.  Creating community seems like such a fluffy, overused, non-essential phrase that can cause an involuntary roll of the eyes.  Leave the “real” work of PD to the research organizations and to the physical therapy, and medical institutions, or so they say.For those navigating the narrowing, darkening halls of a chronic illness such as Parkinson’s Disease –  we say,…
• How to Communicate What It Means to Be “OFF” January 22, 2019 When symptoms re-appear or worsen, you are experiencing an OFF time. That seems to be a simple enough definition of OFF; however, it’s anything but simple. That’s because understanding OFF times and being able to communicate about them are two very different things. And part of that is because the stakeholders in the Parkinson’s community—people with Parkinson’s, care partners and…