Parkinson’s Disease Fatigue Scale

When To Seek Hospice Care

When you or your loved one have a life expectancy of six months or less, you become eligible for hospice care a type of comfort care provided at the end of life for someone living with end-stage Parkinsons disease. Hospice provides extra support so your loved one can live as comfortably as possible.

If you have experienced a significant decline in your ability to move, speak, or participate in activities of daily living without caregiver assistance, its time to speak with a hospice professional.

Read more: What is hospice care?

Some of the things that determine whether your loved one with end-stage Parkinsons is eligible for hospice include: difficulty breathing, bed bound, unintelligible speech, inability to eat or drink sufficiently, and/or complications including pneumonia or sepsis.

If you live in South Jersey, our nurse care coordinator can answer your questions and decide if your loved one is ready for hospice care. Call us 24/7 at 229-8183.

Diagnosis And Treatment Of Parkinsons Sleep Problems

Parkinsons disease is chronic and progressive, meaning it tends to get worse over time. However, there are treatment options that can help manage symptoms and allow patients to get more restful sleep.

The simplest way to start sleeping better with Parkinsons disease is by adopting healthy sleep habits. Sleep hygiene tips for Parkinsons disease sufferers include:

• Sticking to regular bedtimes
• Following a consistent bedtime routine with soothing activities such as listening to music or reading a calming book
• Getting regular exercise, preferably early in the day
• Getting adequate exposure to light, whether outdoors or through light therapy
• Avoiding long naps and naps late in the day
• Creating a cool, dark, and comfortable sleeping environment
• Restricting bedtime activities to sex and sleep only
• Turning off screens an hour before bedtime
• Reducing liquid intake before bedtime
• Avoiding caffeine, alcohol, and tobacco
• Eating a healthy diet and avoiding large meals at night

Light therapy, exercise, and deep brain stimulation have been successfully used to improve overall sleep quality and to treat specific conditions, such as REM sleep behavior disorder, in patients with Parkinsons disease. Cognitive behavioral therapy for insomnia has proven effective at reducing insomnia in healthy adults, although further research is needed on the effects of CBT in patients with Parkinsons disease.

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Clinical Measures Of Fatigue In Pd

A systematic critique of rating scales for diagnosis and severity of PD fatigue used pre-determined criteria for Recommended, Suggested, or Listed, depending on the quality of data. The FSS met the necessary criteria to be recommended for both diagnostic screening and severity measurement., The Multidimensional Fatigue Inventory was designated as recommended for rating fatigue severity, and may be more sensitive to change with interventions than the FSS. For diagnostic screening only, two other scales were recommended: Functional Assessment of Chronic Illness TherapyFatigue Scale and Parkinson Fatigue Scale . Since the MDS review article, the Modified Fatigue Impact Scale has been validated in a study involving 100 PD patients. This scale involves evaluation of cognitive as well as physical and social functioning.

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Figuring Out Causes Of Fatigue

The first step in easing the fatigue associated with Parkinsons disease is to rule out other causes of tiredness, says Liana Rosenthal, M.D., assistant professor of neurology at the Johns Hopkins University School of Medicine and director of clinical core at the Morris K. Udall Center Parkinsons Disease Research Center of Excellence. We evaluate patients to see if there are other things contributing to the fatigue besides their disease, she says.

Sometimes patients may be referred to a sleep specialist for an evaluation. That can help identify causes of tiredness, like sleep apnea. Rosenthal says: Our aim is to first treat any sleep issues, like insomnia, sleep apnea or other causes of poor sleep. Once we treat and address those issues, we can see if fatigue still persists.

Causes Of Fatigue In Parkinsons Disease

Many of the symptoms of PD, including slow movement, muscle stiffness, depression, and changes to sleep quality can cause or worsen the symptom of fatigue.

• Akinesia Fatigue may be caused by akinesia . People experiencing akinesia find it challenging to accomplish simple tasks, requiring significantly more energy to get through the daily activities.
• Muscle fatigue Many of the symptoms of PD that affect the muscles, like stiffness, cramping, tremor, and difficulty starting movement, put extra stress on the muscles, causing fatigue. In addition, some people with PD experience muscle atrophy, in which the muscles shrink and weaken due to lack of use. Muscle atrophy decreases a persons stamina and endurance, contributing to the sense of fatigue.
• Depression Depression is another common non-motor symptom of PD, occurring in approximately 40% of people with PD. Depression can cause fatigue, adding to a sense of low energy or lack of motivation.
• Sleep disturbance PD often causes changes in sleep cycles, which can add to a sense of fatigue during the day.
• Medications Some of the medications used to treat PD, including dopamine agonists, can cause fatigue as a side effect. Others may cause insomnia as a side effect, leading to daytime fatigue.1,2

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Why Does Pd Lead To Fatigue

PD damages certain areas throughout the brain. The nerve cells in the heavily damaged area make dopamine, which is a chemical messenger . Dopamine sends signals to parts of the brain that help make the muscles and nerves work together for smooth movement.3

Doctors have found that low levels of dopamine in PD lead to fatigue. However, many different things can lead to fatigue. When talking to your doctor, they will first work to find out the cause of the problem. It is often PD itself. However, other things besides your disease could be causing your symptoms. Treatment for fatigue will depend on the underlying cause.3,4

Whats The Pact Act And How Will It Affect My Va Benefits And Care

The PACT Act is perhaps the largest health care and benefit expansion in VA history. The full name of the law is The Sergeant First Class Heath Robinson Honoring our Promise to Address Comprehensive Toxics Act.

The PACT Act will bring these changes:

• Expands and extends eligibility for VA health care for Veterans with toxic exposures and Veterans of the Vietnam, Gulf War, and post-9/11 eras
• Adds more than 20 new presumptive conditions for burn pits and other toxic exposures
• Adds more presumptive-exposure locations for Agent Orange and radiation
• Requires VA to provide a toxic exposure screening to every Veteran enrolled in VA health care
• Helps us improve research, staff education, and treatment related to toxic exposures

If youre a Veteran or survivor, you can file claims now to apply for PACT Act-related benefits.

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Parkinsons Disease And Traumatic Brain Injuries

Additionally, a 2018 study published in Neurology, demonstrated an increased risk of Parkinsons disease and parkinson like symptoms from traumatic brain injuries the report used U.S. military and VAs databases to identify vets with TBIs to study.

Below, well get into certain environmental factors, such as occupational exposure to chemicals, that have been linked to Parkinsons.

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Triggers And Alleviating Factors For Fatigue In Parkinsons Disease

• Roles Conceptualization, Data curation, Formal analysis, Writing original draft, Writing review & editing

  Affiliation Department of Neurology, University of Pittsburgh, Pittsburgh, PA, United States of America

• Roles Conceptualization, Data curation, Formal analysis, Writing review & editing

  Affiliation Department of Neurology, University of Pittsburgh, Pittsburgh, PA, United States of America

• Roles Conceptualization, Writing review & editing

  Affiliation Department of Neurology, Duke University, Durham, NC, United States of America

• Roles Conceptualization, Writing review & editing

  Affiliation Graduate School of Public Health, University of Pittsburgh, Pittsburgh, PA, United States of America

• Roles Conceptualization, Project administration, Writing review & editing

  Affiliation Columbia University School of Social Work, New York, NY, United States of America

• Roles Conceptualization, Funding acquisition, Project administration, Writing review & editing

  Affiliation The Michael J. Fox Foundation for Parkinsons Research, New York, NY, United States of America

• Roles Conceptualization, Writing review & editing

  Affiliation Department of Neurology, University of Toronto, Toronto, Ontario, Canada

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Caring For A Veteran With Parkinsons

Along with information and resources available to all Parkinsons caregivers, this page adds links and phone numbers to resources specifically available through the VA for Parkinsons care partners. Also included are the signs of depression, hospital preparedness, and the phone number to the Parkinsons Foundations Helpline.

Insights Into Fatigue From Other Disorders

Although perceived fatigue is probably similar among different illnesses, there may be disease-specific differences. Both similarities and differences may provide insights into fatigue pathophysiology. Similarities in fatigue would be compatible with a hypothesis of shared mechanisms, and thus the possibility of similar interventions. The high prevalence of fatigue in medical and psychiatric disorders points either to some very generalized mechanisms or a limitation in the brains ability to distinguish perceptions. We limited our review of other disorders with prominent fatigue, but excluded chronic fatigue syndrome because of its frequent association with psychiatric disorders such as personality disorders and post-traumatic stress disorder that might confound physiological interpretations.

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How Does It Show Up In Pd

Fatigue is more than being tired. However, fatigue is a complex symptom that can be difficult to define.2

Fatigue is a physical, emotional, and mental state of being extremely tired or exhausted. While most people have experienced fatigue at some point in their lives, those with PD can have fatigue that greatly impacts their quality of life.2

With physical fatigue, your body is weary and exhausted. Mental fatigue can make it hard to concentrate and finish even the simplest tasks.2

Imaging Of Fatigue In Pd

Motor symptoms in PD result from nigrostriatal dopaminergic denervation, but dopaminergic dysfunction does not appear to be related to fatigue in PD. In the ELLDOPA cohort, 49 levodopa-naive PD patients with fatigue had similar CIT striatal dopamine transporter uptake as 82 PD patients without fatigue. Another study showed no difference in 18F-dopa uptake between 10 fatigued PD subjects and 10 nonfatigued PD subjects.,

Serotonin transporter uptake has been reported to be reduced in chronic fatigue syndrome,, suggesting that nondopaminergic pathways may be involved in PD fatigue. Pavese et al. compared serotonergic transporter uptake ligand 11C-DASB) in seven PD subjects with fatigue and eight PD subjects without fatigue. Serotonin transporter binding in the caudate, putamen, ventral striatum, insula, and thalamus was decreased in the fatigued patients. The relationship of the cholinergic system to PD fatigue has not been investigated. The autonomic nervous system may also be involved in PD fatigue. One study found that pressor responses in norepinephrine and dobutamine infusion tests were greater and MIBG cardiac uptake was decreased in PD subjects with fatigue compared with those without fatigue.,

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Data Collection And Analysis

Selection of studies

Two review authors independently screened titles and abstracts of all studies identified by the search strategy. Irrelevant studies were discarded. For the remaining studies, full text papers were obtained and two review authors independently applied the a priori defined selection criteria. We resolved any disagreement by discussion. If necessary, we consulted a third review author to make a final decision.

Data extraction and management

A form for standardised data extraction was designed and tested before two review authors independently extracted data on the:

• characteristics of the study sample
• experimental and control intervention
• outcome measures and

One review author collated and entered all data into Review Manager 5.3 . We resolved any disagreement by discussion.

Assessment of risk of bias in included studies

Two review authors independently used The Cochrane Collaboration tool for assessing risk of bias to investigate the risk of bias in included studies. We scored seven domains of study design according to predefined criteria as ‘low risk of bias’, ‘high risk of bias’ or ‘unclear risk of bias’. We investigated the domain blinding separately for different outcomes, and examined the domain incomplete outcome data separately for the same outcome at different time points. We resolved any disagreement by discussion. If necessary, RE and JV consulted a third review author to make a final decision.

Measures of treatment effect

Continuous data

Tips For Coping With Fatigue

• Exercise. Walk, do Tai Chi, dance, cycle, swim, do Yoga or chair Yoga whatever you enjoy. Fatigue may make it hard to start exercising, but it may make you feel more energetic afterward. If you find it difficult to get going, consider exercising with another person or a group.
• Keep a regular sleep schedule. If you have difficulty sleeping because of tremor or stiffness, trouble rolling over or needing to use the bathroom, talk to your doctor about these issues.
• Take a short nap after lunch. Avoid frequent naps, long naps, or napping after 3 p.m.
• Stay socially connected.
• Pace yourself: plan your day so that you are active at times when you feel most energetic and have a chance to rest when you need to.
• Do something fun: visit with an upbeat friend or pursue a hobby.
• At work, take regular short breaks.

Fatigue has been identified by the PD community as an unmet need. Research to understand and solve fatigue in PD is ongoing.

Page reviewed by Dr. Addie Patterson, Movement Disorders Neurologist at the Norman Fixel Institute for Neurological Diseases at the University of Florida, a Parkinsons Foundation Center of Excellence.

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Fatigue In Parkinsons Disease

This 23-minute video lecture recommends being extremely specific in describing what you experience as fatigue to your doctor to best determine how to treat it. Treatment options should address sleep issues, exercise, re-evaluate all medications, treat low blood pressure, treat depression or anxiety, eliminate other illness than Parkinsons disease. Fatigue is common with aging.

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The Relationship Between Parkinsons Disease And Sleep

Its unclear whether poor sleep causes parkinsonian symptoms to worsen or whether worsening parkinsonian symptoms cause poor sleep. In many cases its likely a case of bidirectionality, with each one exacerbating the other.

Fragmented sleep and sleep deprivation appear to leave the brain more vulnerable to oxidative stress, which has been tied to the development of Parkinsons disease. Parkinsons disease is not usually diagnosed until individuals have developed sufficient motor symptoms, by which time a significant portion of brain cells have already been damaged. If poor sleep quality or having sleep disorders foreshadows the development of parkinsonian symptoms, these could be useful in early diagnosis of the disease.

More research is needed to clarify the multifaceted relationship between Parkinsons disease and sleep. A better understanding of this connection may offer medical experts the unique opportunity to screen at-risk individuals and perhaps delay the onset of the disease.

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Disabilities Secondary To Parkinsons Disease

While most people tend to think of Parkinsons disorder as a neurological movement disorder, and it most certainly is, many people do not realize that other systems in the body can also be severely affected by Parkinsons. Often, the same chemical exposure can also cause other disorders, such asischemic heart disease. However, often it is the Parkinsons itself, or the medication used to treat it that is the causal factor in the development of a new disorder. Whether a veterans Parkinsons was caused by exposure to the TCDD in agent orange, pesticides, trichloroethylene, or its origins are unknown, Parkinsons cause many secondary health effects and disabilities.

Description Of Included Reviews

See: Characteristics of included systematic reviews in and Characteristics of excluded systematic reviews in .

The initial handsearch of the Cochrane Database of Systematic Reviews in March 2010 and a subsequent followup search in September 2010 yielded 520 titles of potential interest. We reviewed abstracts of these titles and identified 185 for further consideration with full papers being obtained. We identified 110 papers as having objectives and outcomes of interest to the overview. Two overview authors independently categorised the remaining papers for their relevance to the overview. After considerable debate we included systematic reviews where quality of life was a primary outcome measure, with fatigue or weight outcome measures separately reported. We also included systematic reviews reporting fatigue and/or unintentional weight loss as secondary outcomes if these were primary outcomes for the majority of the considered studies. We included 27 systematic reviews in the review and these are described in the Characteristics of included systematic reviews in . Systematic reviews of interventions which impacted on the management of fatigue and weight loss in advanced illness but for which treatment of these conditions was not a primary intent of the intervention are listed in the Characteristics of excluded systematic reviews in .

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The Critical Difference Between Sleepiness And Fatigue

Fatigue is a physical or psychological feeling where people feel weary and exhausted and lacking energy. EDS is about needing and having the urge to sleep.

Fatigue is something that people can experience along with EDS however, people who experience fatigue on its ownthe feeling of being tired and out of energy do not also necessarily fall asleep when sedentary, as people who experience EDS often do.

It is estimated that EDS affects up to 50% to 75% of people living with Parkinsons and fatigue is estimated to affect 40% to 60%. Fatigue, however, is more likely to go undiagnosed.

Because the terms fatigue and sleepiness are so heavily linked, and sometimes used interchangeably, research has concluded that fatigue and EDS should be assessed separately in people with Parkinsons so that we can improve our understanding of their overlapping physiology.

With that knowledge, researchers from the University Hospital of Zurich, Switzerland designed a study to determine the overlap between fatigue and EDS and then associate them with other motor and non-motor symptoms as well as dopaminergic medication.

In their study of 88 outpatients, the researchers found that 72% experienced fatigue or EDS and just under half experienced both. Some of the key findings of the study include:

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