Fatigue In Parkinsons Disease: Report From A Multidisciplinary Symposium
A summary of a symposium in October, 2014, reviewing what is known about the diagnosis and treatment of fatigue, its physiology, and what we might learn from other disorders in which fatigue figures prominently, and concluding with focused recommendations to enhance understanding and treatment of fatigue in Parkinsons disease.
Understanding The Lexicon Of Fatigue In Parkinsons Disease
Article type: Research Article
Authors: Mantri, Snehaa* | Klawson, Emilyb | Albert, Stevenb | Nabieva, Karinac | Lepore, Madelined | Kahl, Stephene | Daeschler, Margaretf | Mamikonyan, Eugeniag | Kopil, Catherinef | c | Chahine, Lana M.d
Affiliations: Department of Neurology, Duke University, Durham, NC, USA | Department of Behavioral and Community Health Sciences, University of Pittsburgh, Pittsburgh, PA, USA | The Edmond J Safra Program in Parkinsons disease, Toronto Western Hospital, University of Toronto, Toronto, Ontario, USA | Department of Neurology, University of Pittsburgh, Pittsburgh, PA, USA | Tuck School of Business, Dartmouth College, Hanover, NH, USA | Michael J. Fox Foundation, New York, NY, USA | Department of Psychiatry, University of Pennsylvania, Philadelphia, PA, USA
Correspondence: Correspondence to: Sneha Mantri, MD, MS, 932 Morreene Rd, DUMC 3333, Durham NC 27705, USA. Tel.: +1 919 684 1947 E-mail: .
Keywords: Fatigue, Parkinsons disease, qualitative research
Journal: Journal of Parkinsons Disease, vol. 10, no. 3, pp. 1185-1193, 2020
S You Can Take To Reduce Fatigue
If you are feeling fatigued and exhausted all the time, what can you do about it?
First and most importantly, speak to your healthcare provider about how much the fatigue disturbs you. Does it undermine your daily activities? Does it make it more difficult to attend clinic visits or rehabilitation appointments? Does it feed into your emotional life? Does it undermine your coping ability? Once you speak to your practitioner about your fatigue, your medical professional might also recommend the following steps:
- Engage in regular physical exercise, including the use of weights to increase muscle strength. Studies show that physical exercise combats both physical and mental fatigue.
- Consider taking anti-depressant medication. Although fatigue is not caused by depression, depression can worsen fatigue . Treating depression if it is present might allow you to overcome fatigue with exercise or some other treatment.
- Consider trying stimulants like Ritalin , normally prescribed for attention deficit-hyperactivity disorder or Provigil , prescribed for sleep apnea, as an adjunct for depression and as a palliative treatment in end of life care. Some healthcare providers have reported that these drugs may help certain Parkinson’s patients.
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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.
Association Between Fatigue And Quality Of Life In Parkinsons Disease
To determine the relationship between the perception of fatigue and quality of life, a canonical correlation analysis was conducted using the fatigue scales as the criterion variables and quality of life measures as the predictor variables. The range of correlation within the fatigue scales was r=0.86 to 0.85 and r=0.74 to 0.82 among the quality of life variables. The highest correlated predictor variables was between the PDQ-39SI and NMSQ measures. Omission of either variable did not change the results these two variables were therefore retained. The multivariate analyses produced four discriminant functions, of which the first was significant, F=13.24, p=0.0005 based on Roys greatest-root test. The correlation between the two sets of variables was Rc=0.98, indicating a high degree of relationship between the predictor and criterion variables. The squared canonical correlation which represented the proportion of the variance in the canonical variate of the fatigue scales that can be explained by the canonical variate of the quality of life variables was 96%.
Table 1 Canonical loadings for the fatigue and quality of life in the Parkinson group
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What Causes Parkinsons Disease
The most prominent signs and symptoms of Parkinsons disease occur when nerve cells in the basal ganglia, an area of the brain that controls movement, become impaired and/or die. Normally, these nerve cells, or neurons, produce an important brain chemical known as dopamine. When the neurons die or become impaired, they produce less dopamine, which causes the movement problems associated with the disease. Scientists still do not know what causes the neurons to die.
People with Parkinsons disease also lose the nerve endings that produce norepinephrine, the main chemical messenger of the sympathetic nervous system, which controls many functions of the body, such as heart rate and blood pressure. The loss of norepinephrine might help explain some of the non-movement features of Parkinsons, such as fatigue, irregular blood pressure, decreased movement of food through the digestive tract, and sudden drop in blood pressure when a person stands up from a sitting or lying position.
Many brain cells of people with Parkinsons disease contain Lewy bodies, unusual clumps of the protein alpha-synuclein. Scientists are trying to better understand the normal and abnormal functions of alpha-synuclein and its relationship to genetic mutations that impact Parkinsons andLewy body dementia.
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
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Fatigue In Parkinsons Disease And Potential Interventions
This abstract of a literature review discusses the measurement and pathophysiology of fatigue and fatigability. There rare no evidence-based treatments available. Several pilot studies are reviewed on the effects of pharmacological agents and exercise. These provide some insights on the design of future larger clinical trials. Fee for full article at IOS Press.
Potentials Ways To Reduce Fatigue
- Exercise. It may seem counterintuitive get moving if youre feeling fatigued however, the right kind and the right amount of exercise can significantly reduce fatigue. Experiment. Sometimes just getting out the door for a walk in the fresh air can reduce fatigue.
- Talk to your doctor if you think you may be depressed. Its possible that an anti-depressant could reduce fatigue.
- Plan your time. Identify when you tend to have the most energy throughout the day and plan to get your most important jobs done then.
- Be realistic, but still do something. If youre feeling extra exhausted on a certain day, dont put pressure on yourself to accomplish everything you planned. Do somethingbecause accomplishing something will give you an energy boost but be realistic about what youre capable of doing.
- Delegate. Its not easy. You may have concerns about being a burden to others. Most people will be thrilled to help. Let them.
- Organize and declutter. Opening up spacephysically, emotionally, mentally and logisticallycan help you reduce stress and as a result reduce feelings of fatigue.
- Connect with others. We know that when you feel wiped out that the last thing you want to do is attend a support group meeting or event, but connecting with others in a positive way has the potential to not only make you feel supported and encouraged and loved, but it may very well give you the exact bump in energy that you need.
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Symptoms Of Parkinsons Disease
Parkinsons has four main symptoms:
- Tremor in hands, arms, legs, jaw, or head
- Muscle stiffness, where muscle remains contracted for a long time
- Slowness of movement
- Impaired balance and coordination, sometimes leading to falls
Other symptoms may include:
The symptoms of Parkinsons and the rate of progression differ among individuals. Early symptoms of this disease are subtle and occur gradually. For example, people may feel mild tremors or have difficulty getting out of a chair. They may notice that they speak too softly, or that their handwriting is slow and looks cramped or small. Friends or family members may be the first to notice changes in someone with early Parkinsons. They may see that the persons face lacks expression and animation, or that the person does not move an arm or leg normally.
People with Parkinson’s disease often develop a parkinsonian gait that includes a tendency to lean forward take small, quick steps and reduce swinging their arms. They also may have trouble initiating or continuing movement.
Symptoms often begin on one side of the body or even in one limb on one side of the body. As the disease progresses, it eventually affects both sides. However, the symptoms may still be more severe on one side than on the other.
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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These Exercises Have Helped With My Sisters Cognitive Issues
After much thought and prayer, I decided to ask Bev if we could have an honest and open discussion about how she was feeling in regards to both PD and her life in general. I tried to communicate compassionately that I had noticed some changes in her mood.
Mood changes and increased anxiety are not uncommon in PD and can result from either psychological or biological factors. According to Rachel Dolhun, MD, the vice president of medical communications at the Michael J. Fox Foundation for Parkinsons Research, Parkinsons decreases brain chemicals that impact mood, which means anxiety and depression are rooted in a biological basis.
During my discussion with Bev, I focused on her irritability, anxiety, and balance issues.
Bev said, I know that people care about me and are just trying to help when they make suggestions, but I am tired of hearing them repeatedly. I sometimes just want to be left alone. I can still make my own decisions. My sister has always had a stubborn streak!
I told Bev that I couldnt fully understand her frustration toward PD and her cognitive changes, but that I respected and loved her. I promised to suggest to other family members and friends that we allow her to be as independent as possible, let her make her own decisions when reasonable, and avoid repeating our recommendations to her. Lesson one noted!
Thanks, sis, for sharing your insight and helping me better understand your experience.
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Treatment For Fatigue In Parkinson’s Disease
At least one-third of people with Parkinson’s disease complain about fatigue. It is unclear what treatment is best to reduce fatigue in people with Parkinson’s disease.
We reviewed the medical literature up to April 2015, and found 11 studies that included a total of 1817 people. Nine studies investigated the effects of medication on fatigue. Two studies investigated the effects of exercise on fatigue. We found no studies that investigated the effect of cognitive-behavioural therapy.
We found that doxepin , a drug to treat depression, may reduce fatigue. We found that rasagiline , an anti-Parkinson drug, reduced or slowed down the progression of physical fatigue. Most drugs were safe however, levodopa-carbidopa may cause nausea.
We found no evidence that exercise reduces fatigue in Parkinson’s disease.
Based on the current evidence, it is not clear what treatment is most effective to treat fatigue in people with Parkinson’s disease. Future studies should investigate the effect of cognitive-behavioural therapy on fatigue in people with Parkinson’s disease.
Factors contributing to subjective fatigue in people with idiopathic Parkinsons disease are not well known. This makes it difficult to manage fatigue effectively in PD.
To evaluate the effects of pharmacological and non-pharmacological interventions, compared to an inactive control intervention, on subjective fatigue in people with PD.
Fatigue In Parkinsons Disease
Fatigue is a common but under-recognized problem for people with Parkinsons disease . Fatigue can be defined as an unpleasant sensation of lacking energy, making the performance of routine activities, physical or mental, a strain. People with PD may experience physical fatigue, mental fatigue, or both. Fatigue in PD is not the same as the feeling you might get at the end of a hard days work. It is not necessarily something that goes away with rest. When people with PD are asked about fatigue, they use phrases such as, I feel run down, I am out of energy, I am unable to do anything, I cant get motivated.
Fatigue in Parkinsons Brochure
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Fatigue is common in PD
Fatigue and Depression
There is a large overlap between fatigue and other problems in PD, especially depression and sleep disorders. People with fatigue are more likely to be depressed and people who are depressed are more likely to be fatigued, but there is nonetheless a large group of PD patients who are fatigued but not depressed. Depression in PD typically responds to antidepressant treatment, and depression-related fatigue may improve with such treatment.
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Fatigue and Sleep disorders
Causes of Fatigue
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Financial Support And Sponsorship
This work was supported by grants from the National Key R& D Program of China , National Natural Science Foundation of China , Jiangsu Provincial Social Development Projects , Jiangsu Provincial Medical Key Discipline Project , Jiangsu Key Laboratory of Neuropsychiatric Diseases , and Suzhou Clinical Research Center of Neurological Disease . This work was also partly supported by grants from the Suzhou Youth Technology Project Foundation and Priority Academic Program Development of Jiangsu Higher Education Institutions.
Working With Your Healthcare Provider To Manage Fatigue
If you are experiencing fatigue, ask yourself the following questions. Record the answers in a notebook or on your smartphone, and bring this information to your next doctors appointment.
When do I feel fatigued? How long do my feelings of fatigue last each day? Does my fatigue change with my PD symptoms? Does my fatigue change with the time that I take my medications? On a scale of one to ten, how fatigued am I in the morning, around noon, and in the afternoon?
The answers to these questions can help you and your doctor work together to identify possible causes of the fatigue you are experiencing. To understand and address it, and to rule out non-Parkinsons causes, your healthcare provider will take a complete health history and do a physical exam. Sometimes problems not associated with PD, such as anemia, can explain the fatigue. If necessary, Parkinsons medications can be adjusted.
The Parkinsons Foundation is committed to better understanding how to help people with PD overcome Fatigue. In 2017, we provided funding to two researchers studying fatigue.
Hengyi Rao, Ph.D. at University of Pennsylvania is studying Multi-modal Neuroimaging of Fatigue in Parkinsons Disease.
Milton Biagioni, M.D. at New York University is studying Remotely Supervised Transcranial Direct Current Stimulation for At-home Treatment of Fatigue and Cognitive Slowing in Parkinsons Disease.
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Study Sample And Assessments
Phase 1 and Phase 2 Sample Recruitment: Fox Trial Finder was used to identify individuals for this phase of the study. As previously described , FTF is a database of research volunteers. Individuals enrolled in FTF were sent an email invitation to participate in a study of fatigue in PD. The screening questionnaire included a question on dopamine agonist use, the Parkinson Fatigue Scale , Epworth Sleepiness Scale , and the Geriatric Depression Scale-15 item . In an effort to study primary fatigue participants self-reporting use of a dopamine agonist or with ESS> 10 or GDS> 5 were excluded.
Phase 1 Activities: Online journaling occurred for 1 hour per day over 3 days with a pilot sample of 12 participants . The online journaling phase consisted of interactive activities including responding to pictures and graphics and completing free-text responses to prompts provided by the research moderator . Prompts are included in the Appendix. The data collected from phase 1 were informally analyzed by the study team to define dimensions of fatigue important to patients and to inform data collection in other phases.
Assessments in Phase 3, including those administered as part of Fox Insight study as well as additional questionnaires/surveys collected as part of the PDEC 2018 sub-study, that were considered in this analysis are as follows: