Non-Motor Symptoms of Parkinson’s Disease: The Patient’s Perspective

We continue to learn about the importance of Non-motor Symptoms (NMS) for individuals with PD. NMS are known to be diverse and may include, but are not limited to, sleep disturbance, fatigue, depression, anxiety, difficulties with thinking, and autonomic disorders (e.g., problems with the regulation of heart rate, blood pressure, body temperature, perspiration, and bowel and bladder functions).  Only more recently has the significant impact of these symptoms on quality of life (QOL) become more appreciated.   In our survey, 24 out of 31 NMS categories were experienced by more than 50% of the participants. Urination difficulty, fatigue, sleep, constipation, and cognitive difficulties were the symptoms most frequently reported to adversely impact day-to-day living, and cognitive difficulties followed by sleep disturbance had the strongest impact to quality of life. The overwhelming evidence that NMS burden drives quality of life of the patient has remained a relatively new frontier for exploration, at least in depth and scope as it relates to assessment and treatment of the spectrum of symptoms. Management of NMS remains an unmet need for individuals with PD.

With increased attention to and awareness about the patient’s perspective about NMS, there is an opportunity for improved treatment for such troubling and potentially debilitating symptoms. An integrated treatment team will likely lead to better outcomes, particularly working with individuals who specialize in addressing NMS that are commonly experienced by individuals with PD. 

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Anxiety and Parkinson’s Disease: The Patient’s Perspective

People with Parkinson’s disease (PWP) commonly experience stress and anxiety. We continue to learn about the various manifestations, causes, treatments and implications of anxiety for PWP. What appears to be missing is a deeper appreciation of and awareness about the patient’s perspective of his or her symptoms of anxiety and the perceived impact that anxiety has on day-to-day life.  In our survey, 26% of the participants reported that anxiety was present prior to the diagnosis of PD, and 35% of the participants reported experiencing moderate to extreme generalized anxiety. A large number of the participants reported that anxiety has a moderate to extreme impact on everyday activities, including standing up and walking (fear of falling), interactions with others, engagement in hobbies/leisure activities, engagement in volunteer activities or work, health status, and overall “quality of life.” Use of medications and engagement in non-medication-based intervention for anxiety were reported by many of the participants.  Information about and recommendations pertaining to anxiety for individuals with PD are discussed in the report.

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Happy Spring!

It’s Spring (complete with snow!) and a time for new things. So it seems the right time to be launching a newly designed website for The Parkinson Alliance.

Our team worked really hard on making our site easier to use, and I hope you think so too. We also took care to showcase the people who support us and help us raise the funds to do our job—fund research!

I’m proud of all the scientists and projects we’ve funded—more than $30 million in all, the Alliance together with the Unity Walk and Team Parkinson. And the fact that thousands of people now participate in our quality of life surveys—important patient-centered outcomes research that no one else is collecting in this way.

But I can’t help but feel it’s not enough. Anyone who lives with Parkinson’s as I do, or has a loved one who does, feels that. Sure, we know a lot more about the disease and its effect on our brains and bodies, how it develops and what might be the causes. And treatments—medication, surgery, speech and physical therapy—have gotten more refined. But the true breakthroughs that once seemed just over the horizon are still beyond our immediate reach. It makes me mad sometimes that this disease is so complicated!

But mostly I’m just impatient to finish what my husband Marty and I started nearly 20 years ago. So I hope you join us at the Unity Walk this April and our other events. I know together we can get the job done and end Parkinson’s.

– Margaret Tuchman

Vision and Parkinson’s Disease: The Patient’s Perspective

Vision changes can be a symptom in PD and carry a reported prevalence of approximately 80%. Despite the high prevalence rate, visual symptoms are often underreported and undertreated. The impact of these problems on the healthrelated quality of life of patients with PD is not yet well established. In this report, we shed light on these problems and their relationships to QOL.

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Scientists Reveal Breakthrough in Brain Cell Repair Around Parkinson’s Disease

(November 27, 2017) – Neuroscientists at NUI Galway have made a breakthrough in regenerative medicine approaches to the neurodegenerative condition Parkinson’s disease. The research has shown that the survival of the transplanted brain cells is dramatically improved if they are implanted within a supportive matrix made from the natural material collagen. Read more

The Parkinson Alliance Reports Survey Findings on Swallowing and Parkinson’s Disease From the Patient’s Perspective

KINGSTON, N.J., November 13, 2017 – The Parkinson Alliance released the results of their 27th survey-based research entitled, Swallowing and Parkinson’s Disease: The Patient’s Perspective, based on self-report questionnaires from 1,390 individuals with Parkinson’s disease who were asked about their experience with swallowing and quality of life. The survey conducted by The Parkinson Alliance found that 67% of the participants reported that they experience swallowing difficulties and over half said that the issues have had a negative impact on their quality of life. Despite the high percentage of individuals who revealed that they have challenges in swallowing, only 34% of the participants have had a swallowing evaluation, with even fewer having received formal treatment.

Other research has identified that for individuals with Parkinson’s disease, swallowing dysfunction can lead to isolation, emotional disturbance, reduced quality of life, additional medical problems such as respiratory infections and pneumonia, and even mortality. Our survey was designed to obtain the patient’s perspective not only about swallowing difficulties but also about intervention and its impact on their quality of life.

Our survey’s results are consistent with previous research highlighting that swallowing impairments may indeed be underdiagnosed, underestimated, and undertreated. Increased awareness of and assessment and intervention for swallowing difficulties for individuals with Parkinson’s disease is needed, given its prevalence as noted in our report, and the risks for life-threatening consequences resulting from it.

Margaret Tuchman, Founder of The Parkinson Alliance and co-author of the report, stated, “I have come to realize how challenges in swallowing are significant to my physical health and emotional well-being. Comments from survey participants are included in the report and suggest that there are quite a few swallowing issues that may be under-reported, and individuals with Parkinson’s disease may benefit from receiving professional help such as with a speech/swallowing therapist.”

Recommendations pertaining to swallowing for individuals with Parkinson’s disease are discussed in the report.

Download the full report here.

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