How To Get Palliative Care
If you or a loved one is facing Parkinsons disease, ask your doctor for a referral to palliative carethe earlier the better.
Although living with Parkinsons disease is difficult, your burden may be easier when palliative care is involved. You can receive palliative care in the hospital, at an outpatient clinic and sometimes at home.
Be informed about your condition, its treatment and what you can expect. And if you have received a Parkinsons diagnosis, or if the burden of illness is growing, dont hesitate to ask for a palliative care referral to help you make sense of the situation. With the support of palliative care, you can help ensure that you achieve and sustain the highest quality of life possible.
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
How Can I Help Myself
The general rule is to keep as mentally and physically active as possible. The following suggestions may be helpful:
- Plan your most vigorous activities around when your medication is most effective. You may find keeping a diary to track your symptoms and medication helps with timing when you are likely to be more mobile and energetic.
- Learn how to pace yourself, taking regular short rests and periods in which to relax throughout the day.
- If tasks are complicated or likely to take time, break them down into smaller stages so that you can rest between each stage. Share tasks if you live with someone and make use of labour saving devices such as a dishwasher or microwave.
- Recognise your limitations, identify the priorities of the day and get to know your energy reserves.
- Plan your major activities in advance and ensure that you have time for recovery afterwards. For instance, if you have a big social function such as a wedding, rest more in the days leading up to the event and also plan to have a few restful days afterwards.
- if you work, talk with your employer to see if you can take regular short breaks, even if its only to make a drink or talk with colleagues
Diet and exercise:
Sleep and rest:
Content last reviewed: May 2018
Read Also: What Is Bradykinesia In Parkinson’s
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
No time to finish the article? Download the brochure as a PDF to take this information with you, or share with someone you know.
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.
Introducing an easier way to track your symptoms and manage your care.
Dont want to download the app? Use the non-mobile version here.
Fatigue and Sleep disorders
Causes of Fatigue
Pragmatic Management Of Fatigue In Pd
Treatment approaches focused on fatigue in PD are faced with 2 main limitations: lack of clear insight into its pathophysiology and mechanisms, and probably its multifactorial nature . Therefore, as stated by Kluger and Friedman, contemporary treatment of fatigue in PD is limited to an empirical approach based on plausible hypotheses .
Don’t Miss: Living With Parkinson’s Disease Video
Pathophysiology Of Fatigue In Pd
Most of the evidence suggests that fatigue is an intrinsic symptom to the pathobiological substrate of PD rather than a secondary or reactive phenomenon. For instance, it may precede motor symptoms in a substantial number of patients with PD. In most patients, fatigue did not correlate with PD duration or motor disability,, although some studies indicated that it worsened with underlying disease progression., , However, the interpretation of fatigue in PD is significantly confounded by its clustering with depression, anxiety, sleep disturbances, and apathy. Although it was present in over a onehalf of nondepressed patients with PD and in at least onethird of drugnaive patients in the initial motor stage of the disease, fatigue in PD was related to the severity of depressive symptoms., Fatigue was 1 of the diagnostic criteria for a Diagnostic and Statistical Manual of Mental Disorders, 4th editionbased diagnosis of both major depressive episode and generalized anxiety disorder. However, it is still not clear whether the observed overlaps of fatigue with affective disorders and apathy reflect a diagnostic bias or common pathophysiological mechanisms. A concept of primary fatigue and secondary fatigue has been proposed. In general, it is distinguishable from other related symptoms, such as depression, apathy, and sleepiness, suggesting that fatigue in patients with PD is largely a primary symptom and is not secondary to mood disorders, sleep alterations, or medications.
First Type Of Leg Pain Is Central Pain
This pain is described as constant burning sensation with occasional burst of sharp pain. As it was in my case, this pain is commonly exacerbated by cold and by light touch. I could not stand the sheets to touch my skin and being in a cold room sent my pain through the roof. This type is usually bilateral but it may start on the side where other Parkinsons symptoms begin. For me, it was the leg where my rest tremor began.
You May Like: Does Sam Waterston Have Parkinson
Why Do Parkinsons Patients Have Trouble Sleeping
Despite having daytime tremors, Parkinsons patients do not shake in their sleep. However, both Parkinsons disease itself and the medications used to treat it can give rise to a number of sleep problems that lead to insomnia and excessive daytime sleepiness.
Patients with motor symptoms may have trouble adjusting sleeping positions to get comfortable. Others may experience distressing nocturnal hallucinations when trying to fall asleep. These may be a result of medications or cognitive impairment.
In turn, excessive daytime sleepiness may occur as a consequence of sleeping poorly at night. It may also be triggered by medications. Parkinsons patients who suffer from EDS may be at a higher risk of accidents and unable to safely carry out activities such as operating a motor vehicle.
Since insomnia frequently goes hand-in-hand with anxiety and depression, it may be a contributing factor to sleep problems in people with Parkinsons disease. For that reason, doctors often look for mental health disorders in people with Parkinsons disease who have sleep problems.
Treatment Depends On Properly Identifying The Type
If pain is bilateral always assume it is central pain pain due to PD. In my experience Azilect works great for this type of pain. Other medications which can be employed for this pain as well.
Massage therapy works for all types of leg pain-my favorite therapy but can be costly. Water therapy may also work for all types except central pain. Physical therapy can alleviate dystonia pain, as well as musculoskeletal and radicular pain.
If pain is due to dystonia related to levodopa intake, find out when it occurs—end of dose or at peak dose. Typically adjusting medication doses will resolve problem. However, if dystonia is an initial symptom of PD, initiating treatment with levodopa will resolve. If medication adjustment does not work well for levodopa induced dystonia, another treatment option is DBS . Pain due to dystonia independent of cause can also respond well to Botox injections, as well as centrally acting muscle relaxants. To avoid and alleviate pain caused by stiff muscles, a great treatment option is activity in the form of stretching exercises—any number of activities will do such as tai-chi or yoga. For me when I start having radicular pain shooting down my leg it is time to up my levodopa dosage.
If you are having leg pain make sure to discuss it with your physician.
Don’t Miss: Can You Be Tested For Parkinson’s
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.
What You Can Expect
Parkinson does follow a broad pattern. While it moves at different paces for different people, changes tend to come on slowly. Symptoms usually get worse over time, and new ones probably will pop up along the way.
Parkinsonâs doesnât always affect how long you live. But it can change your quality of life in a major way. After about 10 years, most people will have at least one major issue, like dementia or a physical disability.
Don’t Miss: Is Massage Good For Parkinson’s
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.
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.
Is Parkinsons Disease Inherited
Scientists have discovered gene mutations that are associated with Parkinsons disease.
There is some belief that some cases of early-onset Parkinsons disease disease starting before age 50 may be inherited. Scientists identified a gene mutation in people with Parkinsons disease whose brains contain Lewy bodies, which are clumps of the protein alpha-synuclein. Scientists are trying to understand the function of this protein and its relationship to genetic mutations that are sometimes seen in Parkinsons disease and in people with a type of dementia called Lewy body dementia.
Several other gene mutations have been found to play a role in Parkinsons disease. Mutations in these genes cause abnormal cell functioning, which affects the nerve cells ability to release dopamine and causes nerve cell death. Researchers are still trying to discover what causes these genes to mutate in order to understand how gene mutations influence the development of Parkinsons disease.
Scientists think that about 10% to 15% of persons with Parkinsons disease may have a genetic mutation that predisposes them to development of the disease. There are also environmental factors involved that are not fully understood.
You May Like: What Are Some Treatments For Parkinson’s Disease
Medication Not Working The Way It Used To
In the early stages, taking medicine works well to get rid of symptoms. But as Parkinsons progresses, your medication works for shorter periods of time, and symptoms return more easily. Your doctor will need to change your prescription.
Dr. Valerie Rundle-Gonzalez, a Texas-based neurologist, says to pay attention to how long your medicine takes to kick in and when it stops working. She says you should feel like symptoms significantly improve or are almost gone while on medication.
What Causes Fatigue In Parkinson’s
The precise mechanisms that cause fatigue are unclear but research suggests that any neurological disorder which involves the basal ganglia area of the brain is likely to be associated with significant fatigue. This includes Parkinsons.
In some cases Parkinsons medication may be a factor, for example dopaminergic medications may affect sleep and so add to fatigue. Dosage and timing of medication may also affect energy levels.
Fatigue may be linked to other Parkinsons symptoms, for example depression. With depression there is usually also fatigue, as well as loss of motivation, a general lack of interest and difficulty in sleeping. It is important that these symptoms are recognised as they are very treatable, and overcoming them can reduce fatigue.
If you experience tremor, rigidity or dyskinesia your muscles will have to work harder in order to carry out simple movements or tasks which can mean muscles fatigue more quickly and easily. Slowness of movement may also increase fatigue by making activities and tasks more prolonged and effortful.
You may have sleep problems and poor quality sleep tends to lead to excessive day-time sleepiness and a tendency to nap. Although sleepiness is a separate symptom to fatigue, it clearly adds to the problem and fatigue is hard to overcome if you are sleepy.
Recommended Reading: Does Parkinson’s Get Worse
Fourth Type Of Leg Pain Is Radicular Pain
In this case, the pain is caused by compression of nerves in lumbar area which results in weakness, numbness and tingling, and loss of reflexes from buttocks to foot in a distribution of a nerve. It can be acute or chronic, and can be worse with standing and sitting, or better with laying down. Of note: in my experience many patients including myself have these symptoms not because of physically herniated disc but rather by the stretching of a nerve in the canal as it exists due to severe musculoskeletal rigidity and abnormal posturing.
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.
Recommended Reading: Tai Chi For Parkinson’s
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.
How Is Parkinson Disease Treated
Parkinson disease can’t be cured. But there are different therapies that can help control symptoms. Many of the medicines used to treat Parkinson disease help to offset the loss of the chemical dopamine in the brain. Most of these medicines help manage symptoms quite successfully.
A procedure called deep brain stimulation may also be used to treat Parkinson disease. It sends electrical impulses into the brain to help control tremors and twitching movements. Some people may need surgery to manage Parkinson disease symptoms. Surgery may involve destroying small areas of brain tissue responsible for the symptoms. However, these surgeries are rarely done since deep brain stimulation is now available.
Read Also: Young Onset Parkinson’s Symptoms