Finding Words to Describe Parkinson’s Pain

pain

Parkinson’s disease (PD) pain is unique, so finding words to describe it is difficult. Not all those with a diagnosis experience pain. But for some, like me, pain is the major, disabling symptom. It is important to find words that describe the pain experience as clearly as possible. There is no “grin and bear it,” nor is this “a pity party.” Instead, this is a search for accurate articulation of the pain experience to help maintain quality of life.

Pain may be an early symptom of PD, according to a study presented at the 2018 World Congress on Parkinson’s Disease and Related Disorders titled “Pain: A marker of prodromal Parkinsons disease?” The American Parkinson Disease Association published research that supports the connection of pain with Parkinson’s, suggesting that if the pain is relieved with dopaminergic medication and the patient has a pattern of painful sensations that correlate to “off” episodes, more credence can be given to the idea that the pain is PD-related.

PD pain can resemble pain from other disease processes, especially as the patient ages and faces a multitude of other pain-causing conditions such as arthritis, spine degeneration, poor muscular conditioning, and such. In my case, PD pain is distinguished by the following:

  • The progression of body pain correlated with the progression of the disease over time.
  • Levodopa, a dopaminergic therapy, successfully reduces the pain.
  • The pain is worse during “off” periods.

My PD pain also has a particular characteristic: stinging (sometimes knife-jabbing), irritating tingling, burning, and muscle heaviness with increased pain on movement. This pain happens over large regions of the body and varies in severity. At its worst, it can last several days and reach level 7, inducing spontaneous tears.

PD with episodic chronic pain is disabling in several ways. First, high levels of pain obstruct clear thinking. Second, high levels of pain induce the fight-or-flight response, which interferes with emotion management. Third, the amount of energy necessary to manage it is very tiring (even more so in the face of the deep fatigue associated with PD). Chronic PD pain entails much more than body symptoms.

Parkinson’s pain is a total experience that touches thoughts, feelings, and relationships. Even when it’s a struggle, finding the words to describe pain experiences is imperative to maintaining quality of life in the face of a difficult diagnosis. Finding the right words helps one communicate the pain experience to care providers, family, and friends — a network of relationships that help form the foundation for quality of life. By communicating the pain, those close to me are more understanding of why I act the way I do, which helps to maintain those relationships.

Over the years, I have watched my PD progression. I have taken the warrior stance to do all I can to slow the progression. My hardest battle is with the total experience of chronic PD pain. Large blocks of time disappear into the fog of war. Over time, I have learned the importance of communicating about the pain daily, sometimes multiple times a day. My partner asks, “Where are you today?” I will say, “I’m at level 5,” followed by a quick mention of the most bothersome symptoms. In the past, I kept track of the pain levels throughout several months to create benchmarks. This is all part of finding the words to describe the Parkinson’s pain experience.

I have been a “communicator” most of my life, but it remains a struggle to find words that describe the unique character of PD pain. If you experience PD pain, please share your descriptors in the comments. Together we may find a common dialogue that will help others.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Study Urges Activism to Help Prevent Emerging Parkinson’s Pandemic

Parkinson's pandemic

A “PACT” formed by the Parkinson’s community — to prevent, advocate for increased resources, care for all those affected, and treat with new therapies — may help prevent a Parkinson’s pandemic, according to a review study.

The study, “The Emerging Evidence of the Parkinson Pandemic,” appeared in the Journal of Parkinson’s Disease.

Parkinson’s is the fastest-growing neurological disorder in the world, expected to double from 6.2 million to more than 12 million patients by 2040. Similar to pandemics of infectious diseases, Parkinson’s is increasing in every region of the world, though shifting from the West to the East mainly because of changes in aging and industrialization.

“By 2040, we can truly talk about a pandemic that will result in increased human suffering, as well as rocketing societal and medical costs,” Patrik Brundin, MD, PhD, one of the study’s guest editors, said in a press release. “How can the community be made aware of this scenario and implement changes in research priorities and care programs to lessen the burden of the upcoming pandemic?”

Aging populations — particularly a rapid rise in people older than 65 — and increasing life expectancy are two of the contributing factors to the rise in Parkinson’s. According to a 2018 study, increased life expectancy will extend the survival of 65-year-old Parkinson’s patients in France by nearly three years between 2010 and 2030, increasing disease prevalence by 12%. The number of people with advanced Parkinson’s is also expected to rise.

As smoking has been associated with a 40% lower risk of Parkinson’s, the current decline in smoking rates may also result in greater disease incidence. A recent study estimated that diminishing smoking rates in the U.S. may boost Parkinson’s incidence by 10% above projections that account for aging only.

Byproducts of industrialization — including specific pesticides (such as paraquat), solvents (such as trichloroethylene) and heavy metals — have also been linked to Parkinson’s. In China, a country with rapid industrialization, the prevalence of Parkinson’s increased more from 1990 to 2016 than in any other country. The ongoing use of these products in large quantities may accelerate the increase in cases.

Overall, “assuming a 12% increase due to increasing longevity, a 10% increase due to decreasing smoking, and that about half (10%) of the observed increase in age-adjusted prevalence rates persists due to environmental factors, the burden of [Parkinson’s] could exceed 17 million by 2040,” researchers said.

Unlike most diseases whose burden lessens with improving socioeconomic levels, disability because of Parkinson’s disease increases with income per capita and education. Besides patients, caregivers are also affected by the disease. Parkinson’s is further associated with a growing economic burden, currently directed at institutional care in the U.S.

Activism has played a key role in confronting pandemics of polio, breast cancer, and HIV in the past century, leading to effective prevention, more resources, better care, and new therapies.

“Following these examples,” the researchers proposed, “those with and at risk for [Parkinson’s] can form a “PACT” to prevent, advocate for, care, and treat the disease.” This would involve reducing or eliminating the use of chemicals known to boost Parkinson’s risk, securing more funding to better understand its root causes and to expand new care models, as well as develop new and effective therapies.

The Parkinson’s pandemic “is preventable, not inevitable,” researchers emphasized.

“We hope that this article will raise awareness of the challenge and form the basis for a community-led response to address one of the great health challenges of our time,” said Bastiaan R. Bloem, MD, PhD, a study author from the Radboud University Medical Center in The Netherlands.

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Deep Brain Stimulation May Increase Dementia Risk in Some Parkinson’s Patients, Study Suggests

deep brain stimulation

Parkinson’s disease patients with mild cognitive impairment who undergo deep brain stimulation are at a higher risk of cognitive decline and dementia, a long term “real-life”study suggests.

The study, “Longterm outcome of cognition, affective state, and quality of life following subthalamic deep brain stimulation in Parkinson’s disease,” was published in the Journal of Neural Transmission.

Subthalamic nucleus-deep brain stimulation (STN-DBS) is a surgical treatment for Parkinson’s motor symptoms where a device that generates electrical impulses is implanted into specific regions of the patient’s brain.

Increasing evidence suggests that STN-DBS significantly improves motor symptoms as well as some non-motor symptoms, such as sensory issues and sleep disturbances. However, some reports point to a potential decline in cognition in Parkinson’s patients following STN-DBS.

Researchers here investigated the cognitive status of 104 Parkinson’s patients who received STN-DBS for nine years, from 1997 and 2006, at a single center in Germany.

Neuropsychological data from before the surgery were available for 79 of the patients, of whom 37, diagnosed with Parkinson’s for more than 11 years, were followed long term for a median of 6.3 years after surgery. During this time, they underwent several neuropsychological and motor tests.

In the remaining 42 patients, no follow-up was possible due to patients’ death (21 of the cases), loss of contact (nine patients) and patients’ refusal to undergo follow-up (12 patients).

Researchers measured patients’ dementia rate (using the Mattis dementia rating scale) and cognitive status, focusing on five domains — memory, executive function, language, attention, and working memory — mood (depression and anxiety), and quality of life using the Parkinson’s Disease Questionnaire and the 36-item Short-Form Health Survey.

Motor function was assessed using several motor tests, including the Unified Parkinson Disease Rating Scale motor subscore (UPDRSm) and Hoehn and Yahr Stage, a widely used clinical rating scale, with broad categories of motor function in Parkinson’s.

Prior to the surgery, 28 patients (75.7%) had mild cognitive impairment, while nine patients (24.3%) had normal cognitive function. Moreover, no patients showed signs of Parkinson’s-related dementia.

Patients in the two groups — with and without mild cognitive impairment — showed no differences in age, disease duration, response to treatment, and dosage with levopoda, motor function, and education. Mood and quality of life were also similar.

Patients’ verbal intelligence, measured by a multiple choice word test, and memory were lower in the mild cognitive impairment group.

After undergoing STN-DBS, 18.9%, or seven, of the patients had no cognitive impairment, while the remaining patients (41%) were diagnosed with either mild cognitive impairment (15 patients) or dementia (15 patients).

Mild cognitive impairment has been previously identified as a risk factor for dementia in Parkinson’s patients. Twenty-eight patients categorized as having mild cognitive impairment before STN-DBS developed dementia within 6.3 years after surgery.

Researchers observed a trend, although not statistically significant, between mild cognitive impairment before STN-DBS and progression to dementia according to the patients’ age, sex, and education at the beginning of the study.

Compared with non-demented Parkinson’s patients, those with dementia had longer disease duration (15 years versus 20.2 years, respectively) and more severe motor impairments (UPDRSm score of 23.7 versus 36.1), with demented patients showing a faster progression of several typical Parkinson’s symptoms — bradykinesia (slowness of movement), rigidity, impaired speech, posture, gait, and postural stability.

In general, researchers observed a decline in cognition, including memory and language, in all STN-DBS-treated patients in the 6.3 years after surgery. However, partial working memory (also referred to as short-term memory) was preserved and slightly improved in some cases.

Disease duration, but not age, at the time of DBS surgery had a significant relation to the risk of developing dementia.

“This observational, ‘real-life’ study provides long-term results of cognitive decline in STN-DBS-treated patients with presurgical [mild cognitive impairment] possibly predicting the conversion to dementia,” the researchers wrote.

“Although, the present data is lacking a control group of medically treated PD [Parkinson’s disease] patients, comparison with other studies on cognition and PD do not support a disease-modifying effect of STN-DBS on cognitive domains,” they concluded.

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