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Self-care Skills Program Improves Daily Life for Patients and Caregivers, Study Finds

life quality and self-care skills

A program that teaches Parkinson’s patients and their caregivers techniques to manage day-to-day activities over the course of this disease can help improve both life quality and effective self-care, a study from Sweden suggests.

The study, “Self-Management Education for Persons with Parkinson’s Disease and Their Care Partners: A Quasi-Experimental Case-Control Study in Clinical Practice,” was published in Parkinson’s Disease.

A long-term progressive disease, Parkinson’s requires that patients and the people caring for them develop skills and coping mechanisms in order to best deal with its physical and emotional changes over time.

The Swedish National Parkinson School (NPS) opened to help teach self-care skills to these people. The seven-week program builds on the same principles as cognitive behavioral therapy.

“The NPS promotes awareness of thoughts, feelings, and actions in relation to the impact of disease on daily life and introduces techniques of self-monitoring in order to provide the knowledge and tools needed to enhance the ability to live and handle life with the disease,” the researchers wrote. “It does not primarily focus on the disease itself, but on how to live a good life in the presence of disease.”

The program consists of seven, two-hour sessions, where people with Parkinson’s and their care partners come together in a small group with a qualified instructor — a health care professional who is trained to deliver the program and has experience working with Parkinson’s.

Each session, which ends with a 15-minute relaxation exercise, focuses on a specific topic, including “self-monitoring,” “stress,” “anxiety and depression,” “communication,” “enriching activities,” and “my future life with Parkinson’s disease.”

These topics are “then applied to the participants’ own life situation through practical exercises and homework assignments,” the study notes.

Researchers evaluated NPS in terms of how it affected quality of life, looking at data collected on 48 patients and 30 of their caregivers, after going through the seven-week program. For comparison, they also assessed 44 patients and 25 caregivers who underwent seven weeks of standard care for Parkinson’s. Possible confounding factors — such as familial deaths or births — were similar in both groups.

Participants were given a battery of questionnaires before and after their respective seven-week intervention.

Among patients, those who completed the NPS showed significant improvements on two measures of health-related quality of life: average scores on the Parkinson’s Disease Questionnaire 8 (PDQ-8; higher scores indicate poorer quality) decreased from 28.1 to 23.4. Average scores on the EQ-5D, where higher scores indicate better quality, increased from 0.87 to 0.88. Other measures showed similar trends, but differences were not statistically significant.

In contrast, among patients who received standard of care, scores tended to indicate a worsening quality of life after seven weeks. Decreasing scores (indicating poorer quality) were statistically significant for three subdomains of the 11-item Life Satisfaction Checklist (LiSat-11): satisfaction with life as a whole, leisure, and contacts.

Prior to the intervention, some scores among standard care patients were also significantly higher (implying better quality) than those of the NPS group — namely, the LiSat11 satisfaction with life, as well as some domains of the Health Education Impact Questionnaire. Afterward, these differences were again no longer significant.

No statistically significant changes in questionnaire scores among caregivers who completed the NPS were seen; scores tended to be stable or to increase slightly. For caregivers in the standard of care group, scores tended to be stable or worsen, and there were statistically significant drops in scores for life satisfaction as a whole on the LiSat-11 checklist.

NPS participants also answered a questionnaire evaluating the program itself. Overall, both patients and their caregivers reported high satisfaction.

“For example,” the researchers wrote, “both PwPD [people with Parkinson’s disease] and care partners agreed that participating in the NPS was worthwhile, that its content was relevant, and that their understanding of PD had improved.”

Results are “encouraging” and show “the programme can improve health and the skills required to handle disease and manage symptoms in everyday life and can strengthen the mindset of persons affected by PD of being in charge and not allowing disease to control life,” the researchers concluded.

“The NPS should therefore be offered as an integrated part of a holistic person-centred standard care, and resources should be allocated for the provision of the programme,” they added.

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Study Finds Yoga and Occupational Therapy Program Well-received by Parkinson’s Patients

yoga

A fall prevention program that combines yoga and occupational therapy was well-received by people living with Parkinson’s disease, a new study reports.

Although the study didn’t find significant effects of the program on quality of life, participants perceived improvements in several domains, including social aspects and mobility, pointing to a need for more research to examine effects over a longer period of time.

The study, “Health-related quality of life changes after the merging yoga and occupational therapy for Parkinson’s disease program: A mixed-methods study,” was published in Complementary Therapy in Clinical Practice.

Parkinson’s disease can take a toll on a person’s health-related quality of life (HRQoL), a broad term that encompasses physical, mental, emotional, and social well-being, with a particular emphasis on how an individual’s health affects these aspects of their life.

Falls can contribute to poor HRQoL among people with Parkinson’s; as such, fall prevention programs might be expected to increase HRQoL.

One such program is Merging Yoga and Occupational Therapy (MY-OT). It involves the combination of yoga (to strengthen core muscles and improve balance) and occupational therapy (to provide education about reducing fall risk). Originally developed for stroke, a modified version of MY-OT has been adapted for people with Parkinson’s.

In the new study, 17 people with Parkinson’s completed an eight-week MY-OT program, including biweekly yoga and occupational therapy sessions. The participants were predominantly male (55.6%), married (72.2%), white (100%), college graduates (44.4%), and retired (88.9%); the average age was 71.7 years. The small and relatively homogenous sample size was an acknowledged limitation of this study.

Researchers measured the participants’ HRQoL eight weeks before starting the MY-OT program, immediately before the program, and immediately after the program. HRQoL was evaluated with the Parkinson’s Disease Questionnaire-8 (PDQ-8), a validated instrument for measuring HRQoL in people with Parkinson’s.

There were no statistically significant differences in HRQoL scores before or after MY-OT, or among subgroup comparisons.

The researchers noted that, since HRQoL tends to decline over time in people with Parkinson’s, a finding showing no significant difference could still be meaningful, as it could indicate that HRQoL isn’t getting worse. But, because this study was done in a fairly short period of time and did not include a control group, there isn’t much evidence to support that conclusion based only on this study.

“Thus, seeing no decline in HRQoL scores may be important, but a follow-up assessment would be necessary to track these changes and establish a clear relationship between HRQoL changes over time,” the researchers wrote.

After MY-OT, 16 of the study participants participated in one of two focus groups, during which they were asked about their impressions of the program.

Overall, the program was well-received. Most notably, participants reported that social aspects of the program were valuable.

“I think what I liked the best was the group and seeing myself in everybody else and having that reflected back to me and seeing the kindness of the humanity of the group and what they’re going through and … that’s what was the best for me,” one participant was quoted as saying.

“You know we could have done the same kind of thing as a home study. … But having the group here makes it a lot better,” said another.

Some participants also reported that the intervention helped them feel more mobile, allowed them to participate in day-to-day activities with greater ease, and lessened pain and bodily discomfort.

“In my walking … it took me about an hour to do 6 blocks. I now go over 22 blocks in an hour,” one participant said.

“Instead of it taking you 45 [minutes] to make the bed you can make it in 15,” said another.

A few participants also reported that the intervention made communication easier, helped reduce disease-related stigma, and helped facilitate better emotional well-being. Broadly, participants reported that the intervention helped them feel less stressed and more in tune with their bodies.

“I feel like I’m in such peace … before I used to be very anxious about things and worrying. I don’t do that too much now …. I just have kind of a peace over me that, you know, I’m going to be ok,” one participant was quoted.

Overall, the researchers concluded that, “Although quantitative results showed no significant improvement during the study time, participants in the MY-OT for PD program spoke to improvements in HRQoL over the course of the intervention.” They emphasized the need for more long-term research.

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Depression Linked with Malnutrition in Elderly with Parkinson’s, Study Finds

depression and nutrition

Depression and anxiety can be prevalent among elderly people hospitalized with Parkinson’s disease, and is associated with malnourishment or poor nutrition, a study from Germany suggests.

Findings also indicate that malnutrition is more prominent among men with Parkinson’s whose disease is more advanced or of a longer duration.

The study, “Association between malnutrition, clinical parameters and health-related quality of life in elderly hospitalized patients with Parkinson’s disease: A cross-sectional study,” was published in PLOS One.

Malnutrition broadly refers to a person’s diet that does not adequately provide their body with the nutrients it needs to function properly. In people with Parkinson’s, malnutrition can be a concern for reasons ranging from difficulty swallowing, or loss of smell and taste, to treatment side effects. In more advanced disease stages, these concerns often grow more pressing. Understanding the relationship between nutrition and disease parameters can help facilitate optimal care.

Researchers collected data from 92 elderly people with Parkinson’s disease (40 women, 52 men; average age, 73.6) without dementia, who were hospitalized at Jena University Hospital.

Measurements collected included assessments of motor symptoms (Movement Disorder Society-Unified Parkinson’s Disease Rating Scale), non-motor symptoms (Non-Motor Symptoms Questionnaire) that include depression (Beck’s Depression Inventory), and quality of life (39-item Parkinson’s disease quality of life questionnaire, abbreviated PDQ-39).

Nutritional status was assessed with the Mini Nutritional Assessment (MNA). This short questionnaire consists of six items: food intake in the past three months, weight loss during the past three months, mobility, psychological stress in the past three months, neuropsychological problems (i.e., depression or dementia), and body mass index.

The MNA’s brevity makes it easy to use in a hospital setting, and it has been validated as a way to measure nutritional status. But, the researchers noted, some of its drawbacks need be acknowledged.

“The sensitivity of the MNA is still debated because it has been related to a high risk of overdiagnosis of malnutrition,” they wrote.  Its emphasis on psychological problems, often without clear-cut definitions for what symptoms should correspond to a given score, can hinder the applicability of the MNA in Parkinson’s, whose psychological symptoms are common.

“Therefore, the MNA has limitations in some patients with PD when it is assessed independent of other measures,” the researchers wrote. They used it to obtain a more general snapshot of nutritional status among study patients, with adjustments based on independent measurements, such as depression or dementia.

Based on the MNA data, 6.5% of these 92 people were malnourished, and 39.1% were at risk of malnutrition. Malnutrition was significantly associated with male sex, longer disease duration, more advanced disease, and greater depression.

The researchers then created statistical models to examine the relationship between MNA scores and quality of life (PDQ-39 scores). These models controlled for factors including age, symptom severity (both motor and non-motor), depression scores, and disease stage.

A significant association was seen between MNA and PDQ-39 scores — that is, worse nutritional scores were statistically associated with poorer quality of life. When the researchers looked at different domains of the PDQ-39 individually, they found the strongest association between MNA and scores related to emotional well-being, implying that people with poorer nutrition are more likely to have worse emotional well-being.

“The emotional well-being domain is related to symptoms of depression and long-standing anxiety. Patients with depression are more likely to exhibit loss of appetite and decreased food intake, which can favor malnutrition,” the researchers wrote.

“Further studies in elderly patients with PD should therefore answer if the treatment of depression and anxiety beside diet and physical activity can help to improve nutrition status in these subjects,” they concluded.

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Duloxetine in Trial Fails to Ease Pain, But May Help with Motor Skills

duloxetine and Parkinson's

Use of duloxetine, a treatment for depression and nerve pain, fails to alleviate pain in people with Parkinson’s disease, according to data from a clinical trial.

However, results also showed that it may be of benefit in easing motor symptoms and improving patients’ quality of life, although more studies are necessary.

The findings, “A double-blind, randomized controlled trial of duloxetine for pain inParkinson’s disease,” were published in the Journal of Neurological Sciences.

A neurodegenerative disorder, Parkinson’s is characterized by the gradual loss of dopaminergic neurons in the substantia nigra — a region of the brain responsible for movement control — together with brain inflammation.

Previous studies have shown that patients have a lower pain threshold, possibly due to imbalances in the levels of several neurotransmitters — chemicals that allow nerve cells to communicate — in the brain.

Duloxetine, marketed as Cymbalta and Irenka, is normally prescribed to treat depression and to ease pain in individuals with chronic pain disorders like fibromyalgia, or pain caused by nerve damage. The medication works by preventing certain neurotransmitters from being taken up by nerve cells in the brain, including those thought to be involved in pain processing in people with Parkinson’s.

“Reports on duloxetine’s effect on pain in patients with Parkinson’s disease, however, are rare. One study reported that levels of pain … were significantly lower after 6 weeks of treatment with duloxetine … among the 20 people who completed the study,” the researchers wrote.

Given this study’s small number of patients and its open-label design (lacking a placebo group for comparison), its findings are susceptible to bias.

A team of researchers in Japan, for this reason, carried out a randomized, double-blind, and placebo-controlled trial to evaluate duloxetine’s effectiveness at treating pain in people with Parkinson’s.

The trial (jRCTs061180028) enrolled 46 patients recruited at the Ehime University Hospital, and ran from May 2015 to September 2019. All patients were at the early progressive stages of Parkinson’s, and experienced mild to distressing pain.

Participants were randomly assigned to duloxetine or a placebo, both given orally. The process of randomization took into account patients’ age and pain intensity levels, which were assessed using the Visual Analogue Scale (VAS) for pain.

For the first two weeks, patients were given a duloxetine capsule (20 mg) or placebo capsule every day. Then, for eight weeks, they took two capsules of either duloxetine (total 40 mg dose) or a placebo daily. In the study’s last two weeks, participants went back to one 20 mg capsule of duloxetine or a placebo every day.

Other medications used by patients were maintained, unless “change was necessary”.

The study’s main goal was to assess changes in pain intensity levels from the study’s beginning (baseline measures) to week 10, using the VAS.

Exploratory outcomes included changes in the progression of motor symptoms (Unified Parkinson’s Disease Rating Scale Part III, UPDRS-III), depression (Beck’s Depression Inventory, BDI), and patients’ quality of life (Parkinson’s Disease Questionnaire-39, PDQ-39).

Nine of the 46 enrolled failed to complete the study, including seven — all in the duloxetine group — who discontinued due to adverse events.

No significant differences in pain intensity were found between people treated with duloxetine or those given a placebo through week 10.

However, duloxetine-treated patients experienced significant improvements in their UPDRS-III scores — which translates to a lessening of motor symptoms — and in three areas of the PDQ-39 (activities of daily living, emotional well-being, and communication) compared to those given a placebo.

“These results may indicate that duloxetine has beneficial effects on PD [Parkinson’s disease] patients in more ways than simply through its anti-depressant effects,” the researchers wrote.

“[W]e were unable to confirm previous reports suggesting a favorable effect of duloxetine on pain. Nevertheless, the results are informative, as they pertain to the second study of duloxetine for pain in Parkinson’s disease and the first … placebo-controlled clinical trial using duloxetine to Parkinson’s disease,” they added.

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Boxing May Improve Quality of Life for Parkinson’s Patients, Study Finds

boxing, quality of life

A non-contact boxing program could improve quality of life and willingness to exercise in people with Parkinson’s disease, new data shows.

A preliminary study with these findings will be presented at the American Academy of Neurology‘s Annual Meeting, to be held in Toronto at the end of April.

“Moderate exercise has long been associated with having positive impact on some people with Parkinson’s,” Danielle Larson, MD, a neurologist at Northwestern University McGaw Medical Center and one of the researchers behind the findings, said in a press release, “but the outcome of this specific regimen seems particularly favorable for the majority of people.”

The researchers looked at a boxing regimen called Rock Steady Boxing, a nonprofit program designed for people with Parkinson’s. The program is non-contact: that is, people aren’t hitting each other. Instead, participants attend 90-minute group classes, led by a coach, that feature boxing exercises aimed at increasing agility, speed, muscular endurance, coordination, footwork, and overall strength.

In the study, 1,709 people with Parkinson’s, with an average age of 69, were given a survey on their quality of life. A total 1,499 of the survey respondents were either current or previous participants in the boxing program, while 210 had never participated. The two groups were similar in terms of time since diagnosis.

Among the boxing participants, on average, 43% attended three or more classes per week, 48% attended two classes per week, and 9% attended one class per week.

Overall quality of life was measured on a scale from 0 to 100, with 0 representing the best quality of life. Participants in the boxing program scored better than non-participants — 25 vs. 32 points.

Willingness to participate in an exercise regime was measured on a scale from 0 to 90, with 90 representing the greatest confidence in taking part in the regimen. Boxing participants scored higher than non-participants, with scores of 54 versus 48 points.

Further, 99% of current boxing participants and 94% of previous participants said they would recommend the program to other people with Parkinson’s disease.

Among boxing participants, 70% reported a better social life, 63% had less fatigue, 62% felt less afraid of falling, 60% had mood improvements, and 59% felt less anxious. However, the survey was only administered once; scores were not actively followed for changes over time.

“This demonstrates that Rock Steady Boxing participants have improvement in the non-motor symptoms of the disease and, compared to non-participants, have significantly better quality of life and are more likely to feel confident engaging in continued exercise,” Larson said.

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Palliative Care Leads to Better Quality of Life than Standard Care for PDRD Patients, Study Finds

Palliative care

Palliative care — focusing on physical, psychosocial and spiritual treatment — for people with Parkinson’s disease and related disorders (PDRD) led to a significantly better quality of life (QoL) than standard care alone, a study finds.

Easing of both non-motor and motor symptom severity was linked to palliative care intervention — and those with the greatest needs benefited the most, the researchers said.

The study, “Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders,” was published in the Journal of the American Medical Association, Neurology

Parkinson’s disease and related disorders (PDRD) are a group of disorders that share core features of Parkinson’s but have additional symptoms. People with PDRD do not respond well to standard Parkinson’s medications and have a poor prognosis. 

Given the additional needs of patients with PDRD, an increasing number of medical centers are providing palliative care for these patients. 

While such care is typically associated with hospice and cancer, “recognition of the potential relevance of [palliative care] in other contexts has expanded substantially over the past decade to include earlier deployment, delivery to noncancer populations, delivery in outpatient settings, and delivery by persons not specializing in palliative medicine,” the researchers said.

Palliative care, known as PC, aims to improve quality of life (QoL) and reduce suffering by addressing medical symptoms, psychosocial issues, and care planning. 

Despite the recent advances in patient care, few studies are available that support the effectiveness of palliative care in the PDRD population.

Thus, a team of investigators from the University of Colorado (UC), the University of California, San Francisco (UCSF), and the University of Alberta (UA) in Canada, designed a study (NCT02533921) to examine the effects of this care approach. The team compared outpatient palliative care with standard care alone to assess any differences in participants’ QoL, the burden on the caregiver, and other patient-related outcomes. 

A total of 210 PDRD patients with moderate-to-high care needs were enrolled in the study, with participants randomly divided into a standard care group and a palliative care group. Of those selected, 104 patients and 88 caregivers were part of the standard care group, while 106 patients and 87 caregivers were assigned to the palliative care intervention group.

Standard care was provided by the patient’s primary care physician and a neurologist. 

Outpatient palliative care included standard care plus visits every three months either in person or by telemedicine — two-way videoconferencing and advanced information communication technologies. The PC team consisted of a specialized neurologist with palliative care workshop training, a nurse, a social worker, a chaplain experienced with Parkinson’s patients, and a physician specializing in this type of care. 

The primary outcomes were defined as differences in patient QoL after six months, measured using the Quality of Life in Alzheimer’s Disease (QoL-AD) scale, and by determining caregiver burden, using the 12-item Zarit Burden Interview (ZBI-12). 

Additional patient outcomes also were assessed, including symptom burden and health-related QoL. Patient and caregiver mood, grief, spiritual well-being, and overall impression of change also were reported. The outcomes for both patients and caregivers were recorded at the beginning of the study, and every three months for 12 months.

The results showed that, after six months, those receiving outpatient palliative care had significantly better QoL compared with those receiving standard care. When QoL assessments of patients and caregivers were combined, the impact was even greater. 

While the ZBI-12 difference in caregiver burden at six months was not significant, reassessment at 12 months showed a statistically significant difference. 

The greatest benefit from palliative care intervention was seen among the patients who were assessed, at the beginning of the study, as having greater needs. After 12 months, palliative care had a greater effect on women compared with men. 

In comparison with the standard care group, the PC group had a greater number of patients who experienced a clinically significant benefit in QoL-AD, and a lower number of those who scored worse.

Factors such as age, mood, symptom burden, disease severity, and cognition were not significantly different. However, improvements in non-motor symptoms, motor symptoms severity, and caregiver anxiety were linked to palliative care. 

Standard care alone was not favored for any outcome, the results showed. 

“Outpatient PC is associated with benefits among patients with PDRD compared with standard care alone,” the researchers concluded. “This study supports efforts to integrate [palliative care] into PDRD care.”

The researchers said such efforts are particularly needed for people with more severe symptoms.

“The integration of [palliative care] into PDRD care holds the potential to improve outcomes, particularly for persons who are underserved by current models of care (eg, patients with advanced illness and dementia),” the investigators said.

“Because the PC intervention is time-intensive and resource-intensive, future studies should optimize triage tools and consider alternative models of care delivery, such as telemedicine or care navigators, to provide key aspects of the intervention at lower cost,” they recommended. 

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Here’s Why You Should Consider Getting a Dog

dog

I’m notorious for attempting to convince everyone in my life to get a dog. I love the furry animals, but I often travel or am in places that aren’t particularly dog-friendly. So my latest mission is to convince my dad to get a dog.

Could having a well-trained dog, such as a service dog or an emotional support dog, benefit someone who has Parkinson’s disease? 

Parkinson’s disease and dogs

For someone with Parkinson’s disease, service dogs have been shown to help their owner with challenges like maintaining balance. About 38 percent of people with Parkinson’s disease fall at least once a year, so balance might be one of the disease’s bigger threats. The right service dog could assist its owner in maintaining balance and alerting someone if the owner falls. 

Dogs also can help with freezing episodes by nudging or encouraging their owner to move forward.

While it might not seem intuitive to add another living being to your household, service dogs are trained to perform tasks that their owners might be unable to perform. When properly trained, dogs can turn off the lights, open doors, and carry small items. 

Additionally, many Parkinson’s patients experience depression and anxiety. Dogs can have a positive influence on some of these symptoms. Having a dog around your home can help to combat feelings of isolation while increasing overall health and well-being.

But what type of dog is best for you?

Service dogs

Service dogs are seen as an extension of their human. They are trained to perform tasks that their owner might be unable to perform. 

What you need to know about service dogs:

  • Service dogs can go anywhere their humans go.
  • They aren’t legally obliged to wear a vest, patch, or other identification.
  • They don’t need to be professionally trained to be considered service dogs.
  • Hotels and landlords can’t charge you additional fees for having a service dog.
  • Service dogs come in any shape or breed.

If you’re a dog lover, you might find it useful to know that service dogs don’t always have to be on duty. Sometimes they’re allowed to kick back and be their puppy selves. 

Emotional support dogs

Emotional support dogs essentially are a legal step down from service dogs. They’re intended as therapeutic animals, not to help you perform tasks. You won’t have as much legal flexibility with a support dog as you would with a service dog. For instance, national parks in the U.S. aren’t pet friendly. But because service dogs are seen as an extension of their humans, they are legally allowed. Emotional support dogs wouldn’t be. 

While finding housing, landlords are allowed to ask if you have a disability and if your dog assists with your disability. They’re required to allow you to live with your emotional support dog or another animal regardless of their stance on pet ownership. 

Companionship

I know that dog ownership involves many important factors. They can be expensive. You want them to have a good, active life and a nice yard. Sometimes, the thought of a young dog can feel overwhelming because they require so much attention. 

But adding a reliable companion to your life might make a bigger difference than you realize. (Hi, Dad. Get a dog!) Not only do dogs have a grounding effect on their loved ones, they’re also capable of offering a tremendous amount of support in terms of the tasks they can perform. 

Do you have a service or emotional support dog? What benefits have you encountered? Please share in the comments below.

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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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Weekly Multi-Modal Exercise Program May Benefit Parkinson’s Patients, Study Says

Parkinson's, exercise

A once-a-week multi-modal exercise program can improve and preserve motor function and cognition in Parkinson’s patients, according to a recent study.

Results of the study were presented in a session, “Can a Weekly Multi-Modal Exercise Class Preserve Motor and Non-Motor Function in Parkinson’s?” at The Physiological Society‘s recent early career conference, Future Physiology 2019: Translating Cellular Mechanisms into Lifelong Health Strategies.

Parkinson’s is a chronic neurodegenerative disease that can make it difficult for patients to lead an active lifestyle. Previous studies have shown that single modality exercise — which refers to a single type of exercise — can improve and help maintain both cognitive and physical function in those with Parkinson’s.

However, multi-modal exercise — such as circuit training plus cognitive training — may carry more benefits.

To date, a few studies have evaluated the long-term consequences of regular multi-modal exercises in Parkinson’s patients.

In the study, researchers at the University of Kent established a weekly community-based multi-modal exercise regimen for Parkinson’s patients and assessed the effects of this program on physical function, cognition, and well-being over a period of one, two, and three years.

A total of 25 patients participated in the study, which included 20 men and five women (average age of 64 years) with mild-to-moderate Parkinson’s disease. They attended a 60-minute multi-modal group exercise session weekly for over a year.

Results were compared to an aged-matched group of 20 healthy older adults and 20 Parkinson’s patients who did not exercise.

Several health and functional assessments were completed at the beginning of the study and then every four months for three years. Physical function was assessed using four tests: the six-minute walking test, timed up and go, bilateral grip strength, and 1-minute sit-to-stands.

Additionally, researchers assessed the participants’ cognitive function (using the Clock Drawing Test, Trail Making Test A and B, and the Mini-Mental Parkinson’s or MMP test), and quality of life (using the Older People’s Quality of Life Questionnaire).

At baseline, no health-related differences were reported between the groups. For patients who participated in the exercise regimen, the scores for the six-minute walking test (which measures the distance walked over six minutes), timed up and go (which determines fall risk and measures the progress of balance, sit to stand, and walking), and bilateral grip strength (which measures the strength of the hand and forearm muscles) did not significantly decrease over one, two, or three years.

However, the number of 1-minute sit-to-stands (STS) — a method to assess exercise capacity and physical condition — increased during one year between baseline (STS = 21) and after the first four months (STS = 23). This was also true for the MMP scores, which increased between baseline (MMP = 26.67) and after eight months (MMP = 29.38).

While no other significant changes in health, cognition, and physical function were observed, there was also no decline in these parameters, and exercise seemed to reduce the difference in timed up and go, bilateral grip strength, and STS scores between Parkinson’s patients and healthy older adults after one year.

Additionally, patients who did not participate in the exercise regimen had lower scores for the six-minute walking test, timed up and go, and STS compared to healthy older adults.

“A once-a-week multi-modal exercise program for [Parkinson’s disease] showed an improvement in STS and MMP scores and no other significant changes (i.e. no decline) in health, cognition and physical function over 1, 2 and 3 years,” the researchers wrote.

That functional and cognitive performance were slightly increased or maintained is a positive outcome given the progressive nature of Parkinson’s,” they said.

Anna Ferrusola-Pastrana, a researcher involved in the study, said in a press release: “Finding the right set of exercises, both cognitive and physical, to improve Parkinson’s treatment is an important step towards giving Parkinson’s patients a better quality of life. This research is working towards honing this set of exercises, which can then potentially be performed by patients, with or without assistance at home.”

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Mitsubishi Tanabe Pharma Shares Results from Phase 2 Study of ND0612 for Advanced Parkinson’s

ND0612

Continuous delivery of carbidopa/levodopa (CD/LD) with ND0612 under the skin led to quick improvement of clinical status and better quality of life for  patients with advanced Parkinson’s disease, according to patient-reported outcomes from a Phase 2 clinical trial.

Now, a global Phase 3 study named BouNDless (NCT04006210) is recruiting Parkinson’s patients who have motor fluctuations characterized by the reoccurrence of motor symptoms between levodopa doses. The trial will be conducted at approximately 120 sites globally. (More information on contacts and locations is available here.) This study will compare the effectiveness, safety and tolerability of ND0612 to oral immediate-release CD/LD.

ND016 is delivered by subcutaneous (under-the-skin) infusion via a pump system to increase brain levels of dopamine, found in lower levels in people with Parkinson’s. It has been developed by NeuroDerm, which, similar to Mitsubishi Tanabe Pharma America (MTPA), is owned by Mitsubishi Tanabe Pharma Corporation.

The results from a 28-day, open-label study (NCT02577523), “Impact of ND0612 on patient reported outcomes: A blinded rater study of 2 dosing regimens,” were presented at the 23rd International Congress of Parkinson’s Disease and Movement Disorders in Nice, France.

The trial included 38 patients (age 30–80) assigned randomly to 24- or 14-hour infusions of ND0612. Those in the 24-hour group received a daily CD/LD dose of 720/90 mg, while those in the 14-hour group wee given a CD/LD dose of 538/68mg plus a morning oral dose of CD/LD of 150/15 mg.

After one day of standard oral CD/LD, the patients were treated with ND0612 over 27 days. Supplemental oral CD/LD was used if needed.

Patient-reported outcomes were measured using the Unified Parkinson Disease Rating Scale (UPDRS) part II (activities of daily living) at day 28, and the Parkinson’s Disease Questionnaire (PDQ-39, a measure of health status and quality of life) at day 27. The participants also self-rated their impression of improvement at days three and 28.

The results showed that more than 70% of patients reported an improvement in overall clinical status as early as day three. Continuous (24- group) CD/LD delivery led to a significant improvement — a 2.9-point decrease — in the UPDRS ADL score compared to baseline. These scores also trended toward  improvement in the 14-hour group.

Quality of life also was better for patients in the 24-hour group, as the PDQ-39 score reduced by 7.5 points. Again, these scores also trended toward  improvement in the 14-hour group.

Six of the eight PDQ-39 domains were associated with improvements: bodily discomfort, activities of daily living, emotional well-being, mobility, communication, and stigma.

“Many people with Parkinson’s disease take multiple doses of oral CD/LD as their disease progresses, which can cause additional motor fluctuations that may be debilitating and contribute to poor quality of life,” Atsushi Fujimoto, MTPA’s president, said in a press release. “The data presented at MDS add to the body of research on ND0612.”

Sheila Oren, MD, chief medical officer at NeuroDerm, noted the “potential impact of stabilizing CD/LD levels with continuous treatment on a variety of clinical, daily living and quality of life measures.”

In the study “BouNDless: An active-controlled randomized, double-blind double-dummy study of continuous ND0612 infusion in patients with fluctuating Parkinson’s disease ,” the team also presented the design of the BouNDless trial.

The first of approximately 300 patients was enrolled last month. Eligible patients are those not responding to standard treatments, with a minimum of 2.5 hours of motor fluctuations daily and at least two hours per day in the “off” state (no motor control) during waking hours.

The trial’s primary objective is to determine whether ND0612 improves self-reported daily “good on time,” defined as the sum of “on” time without dyskinesia (involuntary movements) and “on” time with non-troublesome dyskinesia.

“We look forward to gaining additional insights on this investigational treatment through the Phase 3 study,” Fujimoto said.

“We are proud of the research behind ND0612 to date and committed to learning more about this investigational treatment for people with fluctuating Parkinson’s disease through the recently initiated Phase 3 study,” Oren said.

The post Mitsubishi Tanabe Pharma Shares Results from Phase 2 Study of ND0612 for Advanced Parkinson’s appeared first on Parkinson’s News Today.

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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