Survey Results

The goal of this project was to obtain a better understanding of the prevalence of and clinical characteristics related to resilience in people with Parkinson’s, and to provide an opportunity to implement new approaches to enhance quality of life.

Changes in speech and communication for individuals with Parkinson’s disease (PD) are common. The causes and characteristics of speech disturbance in individuals with PD are complex and variable, but there are general patterns of speech changes in PD that are related to and coordinated by an integrated network of sensory, muscular, respiratory, and thinking functions.

This report sheds light on the prevalence of non-motor symptoms in PD from the patient’s perspective. Symptoms discussed include neuropsychiatric (e.g., depression, anxiety, apathy, hallucinations, dementia, etc.), autonomic (e.g., constipation, orthostatic hypotension, urinary changes, sleep (e.g., insomnia, excessive daytime sleepiness, rapid eye movement sleep behavioral disorder, restless leg syndrome, etc.), sensory (e.g., pain, changes in smell and taste, etc.), and speech functions.

Individuals with Parkinson's disease (PD) are confronted with pysical, psychological, and psychosocial issues that impact quality of life, and the medical community is increasingly recognizing health-related quality of life as a major criterion in evaulation of health interventions.  Further assessment of the domains related to health-related quality of life and attitude as it relates to coping with PD is important to further assist in optimizing treatment outcomes.

In recent years, non-motor symptoms of Parkinson’s disease (PD) have received more attention, as these greatly affect quality of life for persons with Parkinson’s disease (PWP), as well as their family and friends. Two poorly understood but common non-motor symptoms in PWP include fatigue and apathy. Each has separate effects on daily life.   Since fatigue and apathy are common in PD, it is important to take a close look at these symptoms, how they may relate to each other, and how they are impacting individuals with PD.

Parkinson’s disease (PD) is classically defined as a movement disorder with primary symptoms of tremor, rigidity, bradykinesia, disturbance of gait, and postural control problems.  Pain, however, is increasingly recognized as a disabling symptom and is cited as a major complaint, often prior to confirmation of a PD diagnosis.  Little is known about the pain experienced by People with Parkinson’s Disease (PWP), or how PWP find relief from painful symptoms.

References from our Pain Report.

(Dec. 09) Among the cardinal features of Parkinson Disease (PD), including bradykinesia, rigidity, resting tremor, abnormal postural reflexes and gait disturbance, gait and balance disturbances as well as falls are a leading cause of disability and dependence on others (Muslimovic et al., 2008). The inability to move around due to gait and balance problems is one of the most important causes of decreased quality of life, morbidity, and mortality in patients with PD (Forsaa, et al., 2008; Muslimovic et al., 2008; Pickering, et al., 2007; Rahman et al., 2008).

References from the peer-reviewed manuscripts from our Balance Report.

(Jan. 09) Speech is a complex behavior that is coordinated by an integrated network of sensory, muscular, respiratory, and cognitive systems.  As a result of the complex nature of speech, symptoms of speech impairment can be quite diverse, reflecting dysfunction in one or more of these systems.  Research has found that speech problems are common in Parkinson’s disease (PD), and it has been found that 70% of persons with PD reported speech impairments after the onset of PD.1 

(Dec. 07) The Parkinson Alliance regularly pursues feedback regarding the research that we conduct. We request feedback about each survey in hopes to ensure that we are meeting the needs of our “community.” We recently conducted phone interviews with participants of our research endeavors to pursue feedback about past surveys and the future direction of research conducted by The Parkinson Alliance.

(Oct. 2007) Individuals with Parkinson's disease (PD) are faced with the challenge of coping with a chronic, progressive disease that will alter their lives in numerous ways. How an individual copes with specific stressful symptoms of the disease has a significant effect on overall function and well-being. The goal of this project was to learn more about coping strategies/mechanisms (the way people cope with illness) in individuals with Parkinson’s disease who have and have not undergone DBS-STN, and to study the relationship between coping, Quality of Life, and certain patient variables.

(Feb 2007) The goal of this project was to learn more about the relationship between sleep and emotional well-being in individuals with PD and to learn more about the differences in this relationship in persons who have and have not undergone Deep Brain Stimulation of the Subthalamic Nucleus (DBS-STN)

(Jan 2007) The goal of this project was to learn more about sleep in individuals with PD who have and have not undergone Deep Brain Stimulation of the Subthalamic Nucleus (DBS-STN), and to study the relationship between sleep and certain patient variables (e.g., disease duration, time since DBS, and other clinical features).

(Dec 2006) Research has found that there is a greater prevalence of anxiety and depression in people with Parkinson’s disease (PWP) compared to the general population. The goal of this project was to learn more about anxiety and depression in individuals with Parkinson's disease who have and have not undergone Deep Brain Stimulation of the Subthalamic Nucleus (DBS-STN), and to study the relationship between anxiety and depression.

(April 2006) Understanding quality of life for patients with PD, from the perspective of the patient, is of great importance. The Parkinson Alliance Quality of Life Scale (PAQLS) was designed to create a unique and comprehensive self-report measure of QoL for individuals with PD who have and have not undergone Deep Brain Stimulation (DBS). The results of this survey provided intriguing perspectives from our participants about motor and non-motor symptoms related to PD, psychosocial factors associated with QoL, and satisfaction with DBS therapy.

Understanding the impact deep brain stimulation (DBS) has on the quality of life (QoL) in patients with Parkinson’s disease (PD) is of on-going need. The effectiveness of DBS for the treatment of motor symptoms in PD is well documented, but the long-term impact of DBS on the multi-faceted components of quality of life is less extensively studied. In addition, few studies have compared QoL in PD patients with and without DBS.

November 2004) This survey was designed to examine quality of life and depression and how certain patient and clinical variables relate to aspects of quality of life and depressive symptoms.

(January 2004) A number of large gaps were uncovered in the patients’ knowledge and understanding of many issues they and their families were struggling with—even as they were recuperating from the surgery. The Focus 1 survey was sent to the respondents of the initial survey. This survey compared the severity of many PD symptoms before and after surgery, as reported by forty-nine patients.

In 2002, the first DBS-STN survey was distributed to a group of PD patients who had DBS-STN surgery. This survey was designed to collect, analyze, and compare the individual circumstances leading up to, through, and after surgery. We found that the survey helped answer many questions and raised some others. The evaluation of the collective responses is the foundation for The First Report.