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What Not to Say to Someone with Parkinson’s Disease

words

Not all people with Parkinson’s disease experience the same symptoms. For example, I am most affected by bradykinesia, poor fine motor skills, incontinence, and fatigue.

I was inspired to write this column based on my personal experiences after I read Sherri Woodbridge’s column, “What to Say to Someone with Parkinson’s Disease.” Most people don’t know what to say and usually have good intentions. However, poorly chosen words can Be mindful of how you speak to someone with Parkinson’s.

  

 1. ‘You don’t look like you have Parkinson’s.’

This is my least favorite comment. Many of my symptoms are unseen. People have no idea how much I am struggling at times to maintain some semblance of normalcy. Most days, I feel shaky and weak, and I am totally exhausted.

A comment like this can minimize the hidden symptoms that are very real to the person with Parkinson’s. Most people do not understand what those of us with the disease deal with daily and sometimes hourly.

2. ‘You are lucky you don’t have tremors.’ Or, ‘Your symptoms could be worse.’

Parkinson’s is progressive and unpredictable. It’s impossible to know where my symptoms might be six months from now, let alone six years from now. Just because I don’t exhibit a particular symptom now does not mean I will never have it. At times, Parkinson’s feels like the sword of Damocles hanging over my head.

3. ‘You look like you are having a good day. Your Parkinson’s must be getting better.’

If I am having a good day with few symptoms, it doesn’t mean that my disease is getting better. There is no cure and no way to heal from Parkinson’s. For me, good days are fleeting and the exception to the rule. A comment like this serves only to remind me that Parkinson’s is progressive.

4. ‘I have the same problem.’

Sometimes, people respond with this statement when I comment about one of my symptoms (choose any of the following):

  • tripping
  • having to sit down when I put on my shoes
  • losing my balance all the time
  • forgetfulness
  • inability to multitask

I think well-meaning people say they have the same issues because they don’t want me to feel alone in experiencing these challenges. After all, they can develop over the natural course of aging. Most people do not understand, however, that I used to be very sharp mentally and was a strong athlete and dancer before I was diagnosed. That makes these symptoms much more glaring for me.

 5. ‘Hurry up!’ Or, ‘What is taking you so long?’ Or, ‘Late, again?’

With Parkinson’s, I have two speeds: slow and slower.

I clearly remember, years ago, watching my Parkinson’s-diagnosed friend putting on her coat or fastening her seat belt. I would think to myself, “Why is she so slow?” Now, I totally understand what she was dealing with.

6. ‘You have to use the bathroom again?’

My late husband always told me my life was ruled by my bladder. No truer words have been spoken, especially now that I have Parkinson’s. I never like to be too far from a bathroom. I found a smartphone app called Flush that displays public restrooms nearby, and I never leave home without it!

7. ‘Please fill out this form and print legibly.’

Doctor’s office staff, please take note of this one. I cringe whenever I see a new doctor and have to fill out reams of paperwork. My handwriting is atrocious; it was the first symptom that sent me to the neurologist. And guess what? I had to fill out a lot of paperwork at his office! Although my typing on a computer is no longer as fast as it used to be, at least I have a spell-checker. E-forms are a greatly appreciated and preferred option.

8. ‘Parkinson’s doesn’t kill you.’

It’s true that people do not die from Parkinson’s, but they typically die from complications of the disease. As an example, Parkinson’s can impair patients’ ability to swallow, putting them at risk for inhaling, or aspirating, food or liquid into their lungs, leading to aspiration pneumonia. Pneumonia is the leading cause of death in patients with this disease.

Still, I fear living with a poor quality of life and loss of my independence more than I fear dying.

In the grand scheme of things, comments made out of ignorance are no big deal considering what people with Parkinson’s deal with every day. Now that you know what not to say, read Sherri’s column on things you can say to someone with Parkinson’s.

Sometimes you don’t have to say anything. Silence speaks it all.”Disha Patani

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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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Resistance Training Reduces Depressive Symptoms in Older PD Patients, Trial Shows

Resistance training

Twenty weeks of resistance training significantly decreases depression symptoms and improves quality of life in older people with Parkinson’s disease (PD), a study has found.

The training, consisting of exercises involving the arms and legs and simulating daily activity movements, also improved patients’ flexibility, endurance, and walking performance.

Based on the promising results, researchers are calling for resistance training to be included in exercise programs for patients with Parkinson’s disease.

Their study, “Resistance training reduces depressive symptoms in elderly people with parkinson disease: A controlled randomized study,” was published in the Scandinavian Journal of Medicine and Science in Sports.

Loss of muscle strength and function predisposes Parkinson’s patients to sedentary behavior and social isolation, with consequent increase in depressive symptoms, affecting up to 40% of patients.

But studies suggest that those who have a more active lifestyle and exercise are less prone to depression.

Some researchers contend that exercise works at least as well as antidepressants. The effect of exercise as natural antidepressant is thought to be mediated either by stimulating the growth of new nerve cells — as antidepressant medications might — or releasing substances from muscles and fat cells (adipocytes) that can travel to the brain and work as antidepressants.

Up to now, known effective physical therapies against depression in Parkinson’s are based mostly on  aerobic exercises.

Here, Brazilian researchers conducted a trial to evaluate the benefits of another exercise modality — resistance training — in reducing depression and improving quality of life in elderly patients with PD.

Considering its potential physical benefits, researchers investigated how much this type of training improved patients’ movement and resistance capacity as well. The trial was sponsored by Pará State University, in Brazil.

Resistance training is a form of exercise designed to improve muscular fitness by exercising a muscle or a group of muscles against any object that poses an external resistance. This causes muscles to contract, which can help improve strength, power, muscle growth, and endurance.

The trial involved 33 patients, age 60 or older, who were randomly assigned to resistance training (17 patients) or a control group (16 patients) for 20 weeks. All were on stable medication and had Parkinson’s stage 1-3 on the Hoehn and Yahr scale.

Those in the resistance training group spent the first two weeks getting used to the exercises, under supervision. After that, they started having training sessions twice a week, on non-consecutive days.

Each session (30–40 minutes each) consisted of two series of of 8–12 repetitions of these exercises: bench press, deadlift, unilateral rowing, standing calf raise and abdominal reverse crunch. Such exercises involve the major muscle groups in the arms and legs and mimic the basic movements of daily activities.

Training loads were increased when the patient had a high performance, with full range of motion.

Unlike the control group, at the end of the 20 weeks, patients performing resistance training had fewer depressive symptoms. Clinician-rated HAM-D17 scores dropped from 17.9 to 10.3.

Patients in this group also reported improvements in their quality of life (as measured by the Parkinson’s disease Questionnaire, PDQ-39) and had better UPDRS scores, which rate Parkinson’s motor and non-motor symptoms.

Concerning motor capacity, resistance training also improved patients’ physical performance as seen in several tests — Timed Up and Go (pre-training, 33.2 seconds versus post training, 26.4 seconds), flexibility on the sit and reach test (pre, 20.7 cm versus post, 28.8 cm), aerobic endurance measured by the two-minute step test (pre, 79.2 steps versus post, 99.1 steps) and maximum walking speed (pre, 1 meter per second versus post, 1.3 meters per second).

In contrast, no significant changes were seen in the control group, either regarding depressive symptoms, quality of life, or motor skills.

“In addition to improving functional capacity and quality of life, resistance training reduces depressive symptoms of elderly with Parkinson’s disease,” the researchers said.

“To our knowledge, the present study is the first to show that 20 weeks of isolated resistance training reduced depressive symptoms in elderly people presenting PD. We suggest that resistance training should be a central component of exercise programs for patients with Parkinson’s disease,” they concluded.

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TNM Device for Thermal Brain Stimulation Eases Motor and Other Symptoms of Parkinson’s, Small Trial Reports

TNM device study

Twice daily treatment with ThermoNeuroModulation (TNM), a non-invasive device for at-home use, provided sustained motor and non-motor benefits and was associated with high satisfaction in a small group of Parkinson’s patients on standard medications, a clinical trial reports.

The study based on its findings,“Caloric vestibular stimulation for the management of motor and non-motor symptoms in Parkinson’s disease,” was published in the journal Parkinsonism and Related Disorders.

Results of a previous study in a 70-year-old man with Parkinson’s found that daily use of caloric vestibular stimulation (CVS) eased both disease motor and non-motor symptoms by nearly 50%.

CVS, which stimulates the vestibular system, is self-administered via the portable TNM device, delivering thermal waveforms through ear pieces in a headset (37° C–42°C to one ear and 37 °C–17 °C to the other, over about 19 minutes). Ears given the slow warming and cooling waveforms are switched every two days.

The vestibular system is a sensory network with diffuse pathways throughout the brain, and responsible for providing the brain with information about motion, head position, and spatial orientation.

Researchers in the U.K. and U.S. conducted a double-blind and randomized trial (NCT02703844) with 33 Parkinson’s patients to determine whether the TNM device, developed by Scion, could provide sustained and clinically relevant motor and non-motor benefits.

All were on standard anti-parkinsonian therapies, most frequently oral levodopa-based treatments. The median age of the 16 patients undergoing TNM stimulation (10 men, median 10 years since diagnosis) was 68. The remaining 17 patients received a sham (placebo) treatment.

Use of the TNM device for two months followed a four-week baseline period. Participants were further evaluated at five and 24 weeks after treatment. At each visit, the patients were assessed during “on” states – which refer to periods when anti-parkinsonian medications are effective — to judge changes in motor and non-motor symptoms, activities of daily living, and quality of life.

Compared to those on placebo, the 16 patients undergoing TNM showed significantly improved scores in the MDS-UPDRS Part I scale, which refers to non-Motor Aspects of Experiences of Daily Living. “Therapeutic gains for this assessment were greatest 5 weeks after the cessation of treatment although change scores at both time-points surpassed a previously established minimal clinically important difference,” the researchers wrote.

Similar benefits were observed in the Montreal Cognitive Assessment of cognitive impairment, MDS-UPDRS Part II — motor aspects of daily life activities — and Part III (motor exam), the Modified Schwab & England Activities of Daily Living scale, the 10-meter test of walking speed, the Timed Up and Go test of mobility and balance, and the MDS-UPDRS Part IV (motor complications).

Most of these benefits were attributed to lesser dyskinesia, or involuntary and jerky movements, and most levels returned to baseline (those at the study’s start) after six months.

Patients given TNM treatment were unable to correctly guess their study group, which the team partly attributed to difficulty perceiving the gradual improvements.

A total of 34 adverse events (AEs) were reported, 24 in the group undergoing TNM stimulation. The three serious AEs were deemed unrelated to the device. Four AEs — ear discomfort, dizziness/motion sickness and migraine — were considered possibly related to the device, and all resolved after the end of treatment. All other AEs were minor and thought most likely due to the disease.

Most, 25 people, found the device easy to use at home, while six had the opposite opinion but continued its use anyway. All but three found the time spent in treatment as “enjoyable” or “acceptable.” Twelve patients on TNM and 16 on placebo rated their overall experience with the device as “very positive” or “somewhat positive.”

“The results provide evidence that repeated CVS can provide safe and enduring adjuvant relief for motor and non-motor symptoms associated with [Parkinson’s],” the scientists wrote.

“One typically doesn’t see such consistency in study results when evaluating a new therapy,” Hubert Fernandez, director of the Cleveland Clinic’s Neurological Institute, who reviewed the data, said in a press release. “The fact that the gains observed were on top of the standard therapies is quite promising.”

Kallol Ray Chaudhuri, the medical director of the Centre of Excellence in Parkinson’s and Movement Disorders at King’s College, also considered the results “very encouraging.” Chaudhuri added that achieving benefits in non-motor symptoms “would be especially notable.”  Such symptoms, he said, “are often untreated or poorly treated and have a particularly detrimental impact on quality of life, and their treatment is a key unmet need.”

“I am intrigued and want to see where this device technology might go,” Chaudhuri added.

The TNM Device 3.2 was cleared for marketing in the U.S. (ages 12 and older) and the E.U. (adults) for the prevention of episodic migraine. Parkinson’s patients may currently only use the device (TNM Device 4.0) in clinical trials.

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Sexually Active Life Linked to ‘Milder’ Disease Progression in Men with Early Stage Parkinson’s, Study Finds

sexual life and disease

An active sexual life is associated with less severe motor and non-motor disability and a better quality of life in men with early Parkinson’s disease, a study reports.

Its findings are “in line with data showing a close relationship between sexual health and general health both in healthy individuals and in patients with chronic disease,” its researchers wrote, calling on doctors to be watchful of their patients’ sexual life.

The study, “The PRIAMO study: active sexual life is associated with better motor and non‐motor outcomes in men with early Parkinson’s disease,” was published in the European Journal of Neurology.

Because people with Parkinson’s disease have to deal with important changes in sexual function, “achieving a satisfying intimate and sexual relationship is often a challenge.”

Data from previous studies indicate that patients’ sexual performance is affected by their illness, and men with erectile dysfunction, particularly, have worse disease progression.

It is important to stress, however, that an active sexual life — rather than a person’s sexual function — can serve as a general indicator of good health. But little is known about how sexual activity influences the course of Parkinson’s disease.

A team of researchers with the Center for Neurodegenerative Diseases (CEMAND) at the University of Salerno, Italy, analyzed data from a group of 355 people (238 men and 117 women) with early stage Parkinson’s disease who were enrolled in the PRIAMO (PaRkinson dIseAse non MOtor symptoms) study and followed for two years.

Researchers wanted to understand if an active sexual life associates with better outcomes, and how prevalent sexual dysfunction is among sexually active Parkinson’s patients.

Individuals were asked whether they had been sexually active in the past 12 months. Those who responded positively were then questioned about specific issues that arose in the last month, including reduced sexual desire, impotence, loss of erection, or inability to reach an orgasm.

Motor disability, cognitive abilities, and quality of life were measured using validated scales: respectively, the  UPDRS‐III, MMSE, PDQ‐39 and EQ-VAS scales. Depression and other non-motor symptoms were also evaluated.

Early stage Parkinson’s was defined as a score of 2 or lower in the Hoehn and Yahr (H&Y) scale, a five-stage measure of disease progression and disability level, at the study’s start.

Data showed that patients’ sexual activity progressively dropped over time, with 56.3% of patients reporting to be sexually active at the study’s start and 50.8% reporting the same two years later. Men were twice as likely to be active as women.

Nearly half of sexually active men complained about erectile dysfunction (difficulties with erection and impotence) and orgasmic disorders at every time point.

Sexually active men tended to be younger and to have had an earlier onset of symptoms than non-active male patients.

Noticeably, sexually active men were less likely to have gastrointestinal problems and less likely to be affected by apathy (a general lack of motivation and interest) than those not sexually active. The odds of lower chances of these non-motor symptoms were 44% (gastrointestinal problems) and 58% (apathy).

Male patients with an active sexual life were associated with less severe motor disability, better quality of life, and lower depression scores. At two years, they were taking levodopa less frequently and had lesser fatigue as well as attention or memory problems, “reflecting a milder motor impairment and disease progression,” the researchers wrote.

No association between sexual activity and disease symptoms were shown for women, which researchers suggested might be because of gender differences in symptoms and attitudes toward open discussion of sexual drive and difficulties, and the smaller group of female patients in the study.

“The most novel finding of our analysis was that, irrespective of disease severity as evaluated by the H&Y, sexually active men displayed distinctive demographic and clinical features,” the researchers wrote, adding that the findings suggest “that sexual activity might be associated with reduced motor and non‐motor burden and milder disease progression in men with early [Parkinson’s disease].”

They added that, from a “clinician’s perspective, examination of a patient’s sexual life is often neglected during the clinical interview.”

While further studies are needed to confirm such data, they “should prompt movement disorders specialists to periodically inquiry about their patients’ sexual life,” the team concluded.

It is important to note that all correlations between sexual activity and patient outcomes were controlled for patients’ age and disease duration.

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Mild Cognitive Impairment in Parkinson’s Linked to Worse Memory, Attention Deficits, Study Reports

mild cognitive impairment

Parkinson’s disease patients with mild cognitive impairment (MCI) have a lower quality of life if their memory is impaired, according to a study that also revealed that MCI is associated with more severe attention and memory dysfunction in people with the disease.

The study, “Mild cognitive impairment in Parkinson’s disease: Characterization and impact on quality of life according to subtype,” appeared in the journal Geriatrics & Gerontology International.

MCI is a major risk factor for dementia and is more prevalent in Parkinson’s patients than in the general population. The prognosis of MCI in Parkinson’s depends on its specific subtypes, which may affect at least five domains: language, memory, attention, visuospatial function, and executive function, the latter of which involves goal-directed actions and ability to adapt to new situations.

Early MCI in Parkinson’s is associated with older age, greater motor impairment, and depression. In addition, research has shown that older age, being male, and motor dysfunction all lead to a greater risk of developing dementia in this patient population. However, a more detailed understanding of MCI in Parkinson’s is needed to improve patient management.

To address this, Brazilian researchers characterized MCI as either amnestic or non-amnestic and assessed its impact on quality of life. For reference, amnestic MCI impairs memory, while non-amnestic MCI affects other domains, namely language, attention, visuospatial skills, and/or executive function.

All participants underwent a neurological examination and were also evaluated using four clinical scales: Modified Hoehn and Yahr scale (which assesses the progression of Parkinson’s symptoms), Unified Parkinson’s Disease Rating Scale (UPDRS), Parkinson’s Disease Quality of Life Scale (PDQ-39), and the Schwab-England Activities of Daily Living Scale.

The study included 149 participants — 60 Parkinson’s patients and 81 individuals used as controls — of whom 52 patients (86%) and 60 controls (74%) had MCI. Overall, patients and controls did not differ in assessments of depression and global cognition, as evaluated with the Mini-Mental State Examination.

Amnestic MCI was diagnosed in 29 patients (mean age 62.1 years, 58.6% men) and 35 controls (61.3 years, 54.3% women), while non-amnestic MCI was found in 23 patients (62.1 years, 58.6% men) and 25 controls (61.3 years, 76% women).

Amnestic and non-amnestic Parkinson’s patients showed no differences in Parkinson’s duration and severity. However, amnestic patients revealed greater impairment in activities of daily living, meaning a lower quality of life.

Impairment in multiple domains was more common than in a single domain in both patients and controls. Regarding the predominant motor sign in Parkinson’s patients, the pure akinetic-rigid form — slow movements and rigidity — was more frequent in non-amnestic (69.65%) than in amnestic (37.9%) patients, but this was not statistically significant.

Neuropsychological evaluations showed that the most useful tests to assess cognition and differentiate amnestic from non-amnestic MCI were the Figure Memory Test, which addresses visual perception, language, attention, recognition, as well as visual short-term, long-term and learning memory; the Rey Auditory Verbal Learning Test; and the Trail Making Test, which analyzes visual attention and task switching.

Parkinson’s patients had worse scores in all three tests than controls. While episodic memory and verbal memory/learning were more significantly impaired in non-amnestic and amnestic patients than in controls, the dysfunction in attention was more pronounced in amnestic Parkinson’s patients.

These findings also revealed that attention was the most significantly impaired domain in both patients and controls, followed by memory.

“These results reveal that the [Parkinson’s] group had worse cognitive performance,” the researchers wrote. A longitudinal analysis of these participants will enable them to determine whether Parkinson’s patients are at a higher risk for dementia and whether this risk is different between amnestic an non-amnestic patients.

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Hydrotherapy Improves Balance, Mobility in Parkinson’s Patients, Study Reports

hydrotherapy

Hydrotherapy may provide significant balance and mobility benefits in patients with Parkinson’s disease compared to medication and land-based exercises, according to a review study.

The research, “The Effects of Hydrotherapy on Balance, Functional Mobility, Motor Status, and Quality of Life in Patients with Parkinson Disease: A Systematic Review and Meta-analysis,” was published in the journal PM&R.

Impairments such as muscle rigidity and tremor affect the balance and mobility of people with Parkinson’s. Combined with fear of falling, it promotes a sedentary lifestyle and reduces quality of life.

Water-based exercise is often prescribed to these patients, providing a safe environment that reduces the risk of falling. Prior studies have reported that hydrotherapy improves motor symptoms. However, the evidence about  hydrotherapy as a treatment strategy in Parkinson’s is scarce.

To address this gap, researchers conducted a systematic review of the available scientific literature and a meta-analysis — a type of statistical analysis that combines the results of various studies.

The scientists focused on hydrotherapy’s effectiveness on patients’ balance, mobility, quality of life and motor function.

For this purpose, the investigators searched seven online databases as well as unpublished or ongoing clinical trials from inception through December 2017. Nineteen studies were identified, of which eight were randomized controlled trials (RCTs). Overall, the studies had 484 participants, with a mean age ranging from 54 to 78 years and an average disease duration ranging from three to 10 years.

The studies had different designs, which included comparisons of hydrotherapy with land-based exercises or medications, combinations of hydrotherapy with land-based therapy, and assessments of low-intensity and muscular resistance water-based exercises.

Hydrotherapy could include balance training, stretching, strengthening, trunk mobility, and gait exercises. The sessions ranged from 40 to 60 minutes, one to five days per week, for three to 20 weeks, for a total of eight to 60 sessions. Water temperature was set between 28ºC (82ºF) and 34ºC (93ºF) in the 12 studies that reported this parameter.

All but two studies with available information on levodopa usage evaluated patients’ in the “on” phase, which refers to the period when this medication is effective and has not yet worn off.

The meta-analysis on balance and mobility included five RCTs, which had a total of 133 patients. The results showed that hydrotherapy with or without land-based exercises significantly improved both balance and mobility compared to land-based therapy or usual care with medication alone.

Three other studies not included in the meta-analysis due to lacking a control group also found significant benefits with hydrotherapy in balance. One RCT not included in the statistical comparison did not report differences with hydrotherapy and land-based therapy, while another showed that aquatic obstacles training is more beneficial for balance than traditional water-based exercises.

In turn, two RCTs not included in the respective analysis failed to show mobility improvements with hydrotherapy.

As for quality of life, an analysis of three RCTs with 76 patients showed no benefits with hydrotherapy compared to land-based treatment, which the researchers attributed to the small number of studies included. This also was observed in one RCT not included in the meta-analysis. In contrast, five other studies, including two non-randomized trials, found significant improvements with water-based treatment.

Results of a meta-analysis of five RCTs with 140 patients also did not reveal improvements in motor function in comparison to land-based exercise. This can be explained by patients having types of motor complications not expected to improve with hydrotherapy, the team said.

Of note, two other RCTs and a non-randomized trial also did not find different results with hydrotherapy compared to other approaches in motor function.

Overall, the scientists wrote, “hydrotherapy, combined or not with other therapies, may improve balance and functional mobility of patients with [Parkinson’s] when compared to land-based therapy alone or usual care.”

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Parkinson’s Patients with Poorer Quality of Life May Benefit the Most from Deep Brain Stimulation, Study Finds

dbs oucome quality of life

Individuals with Parkinon’s disease who have worse quality of life due to their disease-related impairments may benefit most from treatment with deep-brain stimulation.

The study with that finding, “Quality of life predicts outcome of deep brain stimulation in early Parkinson disease,” was published by the journal Neurology.

Deep-brain stimulation (DBS) is an invasive surgical technique in which thin wires are implanted in the brain to deliver electric pulses to specific areas, such as the subthalamic nucleus (STN), to ease motor symptoms in patients for whom standard medications are not effective.

Studies have shown that DBS can effectively help manage motor symptoms and reduce the necessary daily dose of medication, improving quality of life in those with advanced or early-stage Parkinson’s.

In a previous Phase 4 clinical trial (NCT00354133) called the EARLYSTIM study, researchers evaluated the long-term impact of STN-DBS as an add-on to best medical treatment regarding quality of life in patients with Parkinson’s disease for a period of more than two years.

The study enrolled patients younger than 61 who had a good response to levodopa therapy, but who still had developed motor complications. Among the participants, 124 were treated with DBS-STN and best medical treatment, while 127 patients received the best medical treatment only.

In the most recent study researchers reviewed the trial data to understand which factors contributed to the detectable changes in disease-specific quality of life, as measured using the 39-item Parkinson’s Disease Questionnaire summary index (PDQ-39-SI). The self-reported questionnaire assesses Parkinson’s-specific health across eight quality-of-life dimensions.

The analysis revealed that quality of life over the two years of follow-up correlated with the initial value of the PDQ-39-SI in both treatment groups. Still, this association was more pronounced among patients who were treated with STN-DBS.

Patients with very mild impairment due to Parkinson’s, corresponding to PDQ-39-SI values lower than 15, were found not to benefit from STN-DBS as compared to patients treated with standard care alone. In contrast, patients treated with STN-DBS who had PDQ-39-SI sores higher than 15 (worse quality of life) at the beginning of the study experienced better quality of life changes.

“In patients with very low baseline ratings on the PDQ-39-SI, the natural progression of impairment of [quality of life] may outweigh the improvement achieved by STN-DBS,” researchers wrote. “On the other hand, some patients with very modest impairment of their [quality of life] seem to have less to gain from STN-DBS,” they added.

Patients’ cognitive status before the treatment, as determined by the Mattis Dementia Rating Scale (MDRS), was not predictive of change in quality of life in either treatment group. However, higher scores for depression and poorer mood correlated with larger improvements in quality of life among patients in the STN-DBS group.

These findings “may indicate that these patients have a potential for nonmotor improvement to gain from surgery,” researchers suggested.

Changes in quality of life during the two years of follow-up were independent of patient age, disease duration, duration of motor complications, severity of parkinsonian motor manifestation under levopoda therapy, or treatment complications.

Supported by these findings, the team believes that “baseline impairment of quality of life is (…) a reasonable aspect to consider for the decision to treat with STN-DBS.”

“The subjective individual suffering as measured with the PDQ-39-SI should be taken into account as a predictive factor for outcome when selecting patients with early motor complications for STN-DBS,” researchers concluded.

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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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Parkinson’s Patients and Caregivers are Active, but Lack Self-management Support, Study Finds

Self-management and PD

Patients with Parkinson’s disease and their caregivers are usually active and ready to adopt strategies to improve their quality of life and disease management, but lack self-management support, a study finds.

The study, “Development of the Integrated Parkinson’s Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson’s disease,” was published in Quality of Life Research.

Parkinson’s disease is a progressive neurological disease characterized by the gradual loss of muscle control, sometimes accompanied by cognitive deficits that can significantly affect patients’ quality of life.

For this reason, “people with [Parkinson’s disease] and their caregivers require a collaborative approach to healthcare to optimize functioning and promote quality of life,” researchers stated.

This collaborative approach requires patients and their caregivers to be active, well-informed, confident and willing to engage and communicate with healthcare providers to manage disease symptoms and improve their overall quality of life.

However, the lack of integrated care programs, including self-management strategies and education, often result in “PD patients [being] underinformed about critical care issues and experience lack of collaboration among members of their healthcare team.” Self-management refers to patients having the skills and confidence necessary to manage day-to-day tasks and live well with a chronic health condition.

In this study, researchers developed and implemented an integrated approach to care in a tertiary Parkinson’s disease clinic in Ottawa, Canada.

The team chose a process of co-design, where the user viewpoint is essential to inform service delivery.  Patients and caregiver input was gathered through surveys and interviews and used to  develop a model that incorporates care integration, self-management support, and technology-enabled care: the Integrated Parkinson’s Care Network (IPCN).

The observational, cross-sectional study involved 108 participants who were asked to complete two questionnaires: one to evaluate perceived self-management support (Patient Assessment of Chronic Illness Care plus); and the other to assess knowledge, skills, and confidence for managing their own health or that of a loved one (Patient or Caregiver Activation Measure).

A total of 57 Parkinson’s patients and 31 caregivers completed the questionnaires. A subset of 13 patients, six caregivers and six healthcare providers also participated in semi-structured interviews, designed to gather information on participant experiences of managing disease, accessing or providing care, information and support; and areas that worked well and areas for improvement.

Findings revealed that 58% of study participants were moderately or highly active at facing and managing Parkinson’s daily challenges. Caregivers tended to be slightly more active than those living with the disease. Additionally, older adults who require a mobility aid or assistance with activities of daily living tend to be less active.

“Knowledge of patient and caregiver levels of activation can be used to tailor interventions to promote adoption of health behaviors,” researchers stated.

Although patients’ and caregivers’ perceptions of self-management support varied, in general they expressed a lack of goal-setting and follow-up support or coordination. Findings also identified the need to provide relevant information and assistance to access “resources and ongoing monitoring of how patients are managing their condition.”

Participants felt better informed and satisfied when healthcare providers “engaged in open communication and shared decision-making.”

There was a positive association between patients’ goal-setting and the level of follow-up and coordination of care they received. “Goal-setting that is led by the patient may facilitate a more focused approach to care that supports shared decision-making and targets individualized needs for follow-up,” researchers stated.

The team noted that although these findings are designed to inform service development at one clinic, “they can sensitize healthcare providers to the individualized needs of people with  [Parkinson’s disease] and their caregivers.”

“While participants perceived varying levels and types of self-management support, a lack of goal-setting, follow-up, and coordination of care and access to services were highlighted as gaps. Adapting service provision to address these gaps is critical for collaborative care,” they concluded.

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Focused-ultrasound Lesion Surgery Can Treat Tremors and Improve Life Quality, Study Says

tremors and surgery

Treating tremor in Parkinson’s patients using non-invasive and focused-ultrasound lesion surgery is associated with better quality of life when compared to deep brain stimulation, although both approaches are equally effective in easing this disease symptom, a review study reports.

The study, “Outcomes in Lesion Surgery versus Deep Brain Stimulation in Patients with Tremor: A Systematic Review and Meta-analysis,” was published in the journal World Neurosurgery.

At least 50 percent of people with Parkinson’s, essential tremor (ET) or multiple sclerosis (MS) given oral medications as a first-line treatment for tremor — defined as an involuntary, uncontrollable muscle contraction; most commonly in the hands — do not tolerate these medications over the long term.

Current alternatives include deep brain stimulation (DBS) and lesion surgery (LS), which induces lesions on targeted areas using a heated electrode or focused ultrasound. Prior comparisons have shown that while the two techniques are equally effective in suppressing tremor, DBS led to a greater improvement in function.

But LS with focused ultrasound is gaining in popularity, and one study suggested that it may significantly improve tremor and quality of life.

Researchers at Harvard Medical School conduced a systematic review and a meta-analysis — a type of statistical study that combines the results of various studies — to determine which strategy is most effective in diminishing tremor severity and improving life quality and function in people with Parkinson’s, ET, or MS.

Three online databases were searched for results of randomized clinical trials published up to Jan. 1, 2018, and that included adults treated with either LS or DBS, or serving as controls. Both DBS and LS studies targeted unilateral or bilateral thalamus, pallidum or subthalamic nucleus, all of which are implicated in motor function.

Thirteen Parkinson’s trials were among the 15 included in this study, and the primary outcome for all but one was change in upper limb tremor severity, as assessed with the unified Parkinson’s disease rating scale (UPDRS) part III. Changes in quality of life, cognitive function and neuropsychiatric function were also assessed with variable measures.

A total of 1, 508 patients (mean age range, 48.4 to 70.8) were included, and in addition to the 13 studies involving only Parkinson’s patients, one study looked at people with Parkinson’s, ET and MS, while the remaining study was in people with severe ET.

Four of the 15 trials — involving 125 patients — directly compared DBS to LS. The others compared either LS or DBS with controls.

Results showed that DBS and LS were not significantly different across all analyzed outcomes, which is in line with current guidelines, the researchers noted. All but one trial showed both these types of surgery eased tremor severity. Quality of life findings showed variability in outcomes, which was driven by disease duration. Specifically, longer disease duration correlated with a greater likelihood of surgery and better quality of life.

A subgroup analysis that looked specifically at LS using focused ultrasound revealed that this approach was associated with a significant improvement in quality of life compared to DNS, although changes in tremor severity were similar.

“Policy makers, healthcare providers, and patients could therefore consider focused-ultrasound [LS] as a potential choice for tremor control, based on currently available evidence,” the researchers wrote.

However, results from more studies directly comparing DBS with focused-ultrasound LS are needed, they advised.

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