Are You A Carer
Sleep and night-time problems are almost twice as common among carers of people with Parkinsons than in the general population.
If you are caring for someone with Parkinsons, these sleep disturbances may lead to an increased risk of depression and stress.
It may be difficult sometimes, but if youre a carer its important to have good sleeping habits. This will help improve your health, wellbeing and general quality of life.
Much of the advice on this page applies to you as a carer as well as the person you care for.
Memory Or Thinking Problems
Having issues with thinking and processing things could mean your disease is progressing. Parkinsons is more than a movement disorder. The disease has a cognitive part as well, which means it can cause changes in the way your brain works.
During the final stage of the disease, some people may develop dementia or have hallucinations. However, hallucinations can also be a side effect of certain medications.
If you or your loved ones notice that youre getting unusually forgetful or easily confused, it might be a sign of advanced-stage Parkinsons.
What Is The Outlook For Persons With Parkinsons Disease
Although there is no cure or absolute evidence of ways to prevent Parkinsons disease, scientists are working hard to learn more about the disease and find innovative ways to better manage it, prevent it from progressing and ultimately curing it.
Currently, you and your healthcare teams efforts are focused on medical management of your symptoms along with general health and lifestyle improvement recommendations . By identifying individual symptoms and adjusting the course of action based on changes in symptoms, most people with Parkinsons disease can live fulfilling lives.
The future is hopeful. Some of the research underway includes:
- Using stem cells to produce new neurons, which would produce dopamine.
- Producing a dopamine-producing enzyme that is delivered to a gene in the brain that controls movement.
- Using a naturally occurring human protein glial cell-line derived neurotrophic factor, GDNF to protect dopamine-releasing nerve cells.
Many other investigations are underway too. Much has been learned, much progress has been made and additional discoveries are likely to come.
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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 doctor 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 doctor about your fatigue, your doctor 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 doctors have reported that these drugs may help certain Parkinson’s patients.
Rem Sleep Behavior Disorder
REM sleep behavior disorder can cause you to act out violent dreams, and also can make it difficult to get a good night’s sleep. REM sleep, or rapid eye movement sleep, is the form of deep sleep where you have the most intense dreams. Usually, when you dream during REM sleep, nerve impulses going to your muscles are blocked so that you cannot act out your dreams. In REM behavior disorders, that blocking of the muscle impulses no longer occurs, so you are then free to act out your dreams. While estimates vary dramatically, approximately 50 percent of PD patients are estimated to have partial or complete loss of muscle atonia during REM sleep.
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Potential Ways To Reduce Excessive Daytime Sleepiness
- Assess the underlying cause
- Improve nocturnal sleep through medications, cognitive behavioral therapy, diet, light therapy and more
- Evaluate all medicines being takensome have hypersomnia as a side effectand adjust as needed
- If taking dopaminergic medications, consider dose adjustment
- Watch consumption of alcohol or sleep-inducing foods/ingredients
- Experiment with caffeine
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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Sleep And Depression In Parkinson’s Disease
Depression is seen in approximately 40% of PD patients in the course of their disease. Most persons with depression, including PD patients, also will experience problems with sleep. In depression, sleep does not refresh you like it used to, or you wake up too early in the morning. Dreams for depressed people are different, too–they are rare and often depict a single image.
Increased Feelings Of Anxiety Or Depression
Anxiety and depression have been linked to Parkinsons. In addition to movement problems, the disease can also have an impact on your mental health. Its possible that changes in your emotional well-being can be a sign of changing physical health as well.
If you are more anxious than usual, have lost interest in things, or feel a sense of hopelessness, talk to your doctor.
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Parkinsons Sleep Problems: Diagnosis And Treatment
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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Whats The Relationship Between Parkinsons And Sleep
Parkinsons disease and sleep are connected in complex ways that not even scientists completely understand quite yet.
Sometimes, Parkinsons disease directly causes sleep problems. According to one study, sleep-related symptoms may be one of the earliest signs of Parkinsons disease. These signs may include things like thrashing while youre asleep.
Other factors can also play a role. One thing is clear: For many people with Parkinsons disease, a restful nights sleep can be hard to find.
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What Causes Parkinsons Disease
Parkinsons disease occurs when nerve cells in an area of the brain called the substantia nigra become impaired or die. These cells normally produce dopamine, a chemical that helps the cells of the brain communicate . When these nerve cells become impaired or die, they produce less dopamine. Dopamine is especially important for the operation of another area of the brain called the basal ganglia. This area of the brain is responsible for organizing the brains commands for body movement. The loss of dopamine causes the movement symptoms seen in people with Parkinsons disease.
People with Parkinsons disease also lose another neurotransmitter called norepinephrine. This chemical is needed for proper functioning of the sympathetic nervous system. This system controls some of the bodys autonomic functions such as digestion, heart rate, blood pressure and breathing. Loss of norepinephrine causes some of the non-movement-related symptoms of Parkinsons disease.
Scientists arent sure what causes the neurons that produce these neurotransmitter chemicals to die.
What Else Can I Do To Sleep Better With Parkinsons Disease
Practicing healthy sleep hygiene habits may also promote more restful sleep.
- Get outside during the day. Bright light tells your body its time to be awake.
- Keep your body moving during the day. Even if all you feel up to is a short walk or two, all physical activity offers benefits.
- Try at-home remedies, such as massage or a warm bath. Relaxing your mind may help your body fall asleep.
- Take long naps during the day.
- Use stimulants, such as caffeine, within six hours of bedtime.
- Use your bedroom for activities other than sleeping. Go to another room to read, watch TV or work.
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Why Do Parkinsons Patients Sleep So Much
Parkinson’s patients experience difficulties with their sleep due to the disease itself and the medications that treat it. This can lead to increased sleepiness during the day.
Parkinsons disease can cause problems with sleep, and the medications used to treat it can cause even more. Difficulties sleeping during the night can cause daytime sleepiness, and the medications can also cause drowsiness. This disruption to the circadian rhythms can lead to more frequent, lower quality sleep.
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.
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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:
What Is Parkinsons Disease
Parkinsons disease is a nervous system disease that affects your ability to control movement. The disease usually starts out slowly and worsens over time. If you have Parkinsons disease, you may shake, have muscle stiffness, and have trouble walking and maintaining your balance and coordination. As the disease worsens, you may have trouble talking, sleeping, have mental and memory problems, experience behavioral changes and have other symptoms.
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I am a very active person, but deep fatigue must be addressed with rest. Taking a day to rest is not in my nature. It makes me feel like a sloth. Yet, when deep fatigue hits me, the best remedy is to do just that take the day off! I limit myself to one day of physical rest, very rarely two days . I also find that the mind must rest with the body. Getting the mind to a quiet place is the practice of meditation, in whatever form suits the moment. At the height of deep fatigue, meditation can be very difficult, but not impossible. At times, it has taken me four hours to quiet my mind and body to get rejuvenating rest.
But there is a caution here: Be wary of using rest as an excuse to procrastinate. In another column, Ill address the link of scenario looping to set-shifting issues and difficulty initiating new tasks. Basically, getting off the sofa can be problematic if I stay there too long. Perhaps this seems contradictory to my history as a highly active person, but that is the nature of PDs nonmotor effects. Once off the sofa, I make myself shift into a physical task, followed by a short rest and then some type of mental task. There is always some resistance to overcome to do this to get off the sofa but the rest is absolutely necessary to stop the deep fatigue.
Tips For Coping With Fatigue
- Eat well.
- Stay hydrated.
- 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 many people say it makes them 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. But avoid frequent naps throughout the day, or napping after 3:00 PM.
- 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.
Note: Fatigue has been identified by the Parkinsons community as an unmet need through the PDF Community Choice Research Awards. In response, PDF is investing in research to understand and solve fatigue in Parkinsons.
Content for this article was derived from Fatigue, and Fighting Fatigue on PDF.com
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Causes Of Fatigue In Parkinsons Disease
- 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
Changes In Sleeping Patterns
As Parkinsons progresses, you can also develop problems with sleep patterns. These may not happen in the early stages, but can be noticeable later. You might wake up often in the middle of the night or sleep more during the day than you do at night.
Another common sleep disturbance for people with Parkinsons is rapid eye movement sleep behavior disorder. This is when you start acting out your dreams in your sleep, such as verbally and physically, which can get uncomfortable if someone is sharing your bed. Dr. Rundle-Gonzalez says many times a bed partner will be the one to notice sleep problems.
REM sleep behavior disorder can also happen in people who dont have Parkinsons. However, if this isnt something youve dealt with before, its likely related to your disease. There are medications your doctor can prescribe to help you sleep comfortably through the night.
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Tips For Better Sleep
The best place to start is with your doctor, who may be able to change or adjust your Parkinson’s medications so that they interfere with sleep less. In some cases, you might be able to take a medication that helps you stay awake during the day so you sleep better at night.
If you have a sleep disorder or depression, other medications may help. Be sure to ask your doctor before taking any over-the-counter sleep medications. Many contain an antihistamine, which can actually make Parkinson’s symptoms worse.
There are also sleep strategies you can try for yourself:
Stick to a regular sleep schedule. Getting up and going to bed at the same time every day, even on weekends, can help regulate your sleep cycle.
Avoid caffeine for at least six hours before bedtime. That means chocolate as well as coffee, tea, and sodas with caffeine.
Stay active during the day and avoid taking naps. The energy you expend during the day will leave you more tired at night. Complete your exercise regimen at least 3 hours before bedtime to optimize pre-sleep relaxation.
Get outside for some exercise every day. Morning sunshine helps set your biological clock.
Limit fluids in the evening. Avoid drinking a lot of fluid in the hours before bed to cut down on the need to urinate in the middle of the night.
Try a relaxation routine. Get in the habit of treating yourself before bed to a relaxing activity such as a hot bath or shower or a gentle massage.