How Can People Cope With Parkinson’s Disease
While PD usually progresses slowly, eventually daily routines may be affectedfrom socializing with friends to earning a living and taking care of a home. These changes can be difficult to accept. Support groups can help people cope with the diseases emotional impact. These groups also can provide valuable information, advice, and experience to help people with PD, their families, and their caregivers deal with a wide range of issues, including locating doctors familiar with the disease and coping with physical limitations. A list of national organizations that can help people locate support groups in their communities appears at the end of this information. Individual or family counseling may also help people find ways to cope with PD.
People with PD may also benefit from being proactive and finding out as much as possible about the disease in order to alleviate fear of the unknown and to take a positive role in maintaining their health. Many people with PD continue to work either full- or part-time, although they may need to adjust their schedule and working environment to accommodate their symptoms.
Is There A Cure For Parkinson’s Disease
Although research is ongoing, to date there is no known cure or way to prevent Parkinson’s disease. But, research has made remarkable progress. There is very real hope that the causes, whether genetic or environmental, will be identified and the precise effects of these causes on brain function will be understood. These remarkable achievements give real hope for the future.
Still, even though there is no cure for Parkinson’s disease, by identifying individual symptoms and determining a proper course of treatment, most people with the disease can live enjoyable, fulfilling lives.
What Are The Symptoms Of Parkinsons Disease
Symptoms of Parkinsons disease and the rate of decline vary widely from person to person. The most common symptoms include:
Other symptoms include:
- Speech/vocal changes: Speech may be quick, become slurred or be soft in tone. You may hesitate before speaking. The pitch of your voice may become unchanged .
- Handwriting changes: You handwriting may become smaller and more difficult to read.
- Depression and anxiety.
- Sleeping disturbances including disrupted sleep, acting out your dreams, and restless leg syndrome.
- Pain, lack of interest , fatigue, change in weight, vision changes.
- Low blood pressure.
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Foster A Good Relationship
Lastly, maintaining your relationship and communication with the person with Parkinsonâs can be the most challenging and rewarding aspect of caregiving. As Parkinsonâs disease progresses, the roles change and the person with Parkinsonâs may go from being an independent head of the household to a very dependent person requiring a significant level of care. However, research shows that despite high levels of strain, caregivers with good quality relationships have reduced depression and better physical health. Remember, as a caregiver your service to your loved one is beyond measure in terms of love, depth of care, and concern.
Complications Related To Parkinson’s Can Affect Survival
Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology. She is an associate professor of neurology at Tufts Medical School and medical director of the Lahey Clinic Multiple Sclerosis Center in Lexington, Massachusetts.
Parkinson’s is a common neurodegenerative disease, and although it is not fatal, research suggests it may influence life expectancy.
A 2012 study in Archives of Neurology examined the six-year survival of nearly 140,000 Medicare beneficiaries with Parkinson’s disease in the United States. During the six-year period, 64% of the participants with Parkinson’s disease passed away.
The risk of death of those with Parkinson’s was then compared to Medicare beneficiaries who did not have Parkinson’s or any other common diseases, including:
When controlling for variables like age, race, and gender, the six-year risk of death among people with Parkinson’s was found to be nearly four times greater than those Medicare beneficiaries without the disease or other common diseases.
At the same time, the rate of death among those with Parkinson’s disease was similar to those with hip fracture, Alzheimer’s dementia, or a recent heart attackalthough it was higher than those who had been newly diagnosed with either colorectal cancer, stroke, ischemic heart disease, or chronic obstructive pulmonary disease.
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Drug Therapy And Research
If the disease progresses beyond minor symptoms, drug treatment may be indicated. Drug therapy for Parkinsonâs typically provides relief for 10â15 years or more. The most commonly prescribed medication is L-dopa , and this helps replenish some of the depleted dopamine in the brain. Sinemet, a combination of levodopa and carbidopa, is the drug most doctors use to treat Parkinsonâs disease. Recent clinical studies have suggested, in the younger person, the class of drugs called âdopamine agonistsâ should be used prior to levodopa-carpidopa except in patients with cognitive problems or hallucinations. In those older than 75, dopamine agonists should be used cautiously because of an added risk of hallucinations.
Other drugs are also used, and new drugs are continually being tested. It is common for multiple drugs to be prescribed because many of them work well together to control symptoms and reduce side effects. Contrary to past beliefs, starting Sinemet in newly diagnosed people does not lead to early symptoms of dyskinesia . Current knowledge is that the disease progression causes dyskinesias, not a âresistanceâ to the drug.
Quality of life studies show that early treatment with dopaminergic medications improves daily functioning, prevents falls, and improves a personâs sense of well-being.
Tips For Caring For Someone With Parkinsons Disease
Caring for a loved one with early onset Parkinsons can be difficult. If youre a caregiver for someone with this condition, its important that you remember your own emotional and physical health.
Not only are you dealing with a difficult diagnosis, youre also managing an increased number of responsibilities. Burnout is common in caregivers, so make sure youre checking in with your own needs.
The Michael J. Fox Foundation Center for Parkinsons Research recommends these tips for caregivers:
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Parkinsons Disease Is A Progressive Disorder
Parkinsons Disease is a slowly progressive neurodegenerative disorder that primarily affects movement and, in some cases, cognition. Individuals with PD may have a slightly shorter life span compared to healthy individuals of the same age group. According to the Michael J. Fox Foundation for Parkinsons Research, patients usually begin developing Parkinsons symptoms around age 60. Many people with PD live between 10 and 20 years after being diagnosed. However, a patients age and general health status factor into the accuracy of this estimate.
While there is no cure for Parkinsons disease, many patients are only mildly affected and need no treatment for several years after their initial diagnosis. However, PD is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time. This progression occurs more quickly in some people than in others.
Pharmaceutical and surgical interventions can help manage some of the symptoms, like bradykinesia , rigidity or tremor , but not much can be done to slow the overall progression of the disease. Over time, shaking, which affects most PD patients, may begin to interfere with daily activities and ones quality of life.
What Are The Symptoms Of The Disease
The four primary symptoms of PD are:
- Tremor. Tremor often begins in a hand, although sometimes a foot or the jaw is affected first. The tremor associated with PD has a characteristic rhythmic back-and-forth motion that may involve the thumb and forefinger and appear as a pill rolling. It is most obvious when the hand is at rest or when a person is under stress. This tremor usually disappears during sleep or improves with a purposeful, intended movement.
- Rigidity. Rigidity , or a resistance to movement, affects most people with PD. The muscles remain constantly tense and contracted so that the person aches or feels stiff. The rigidity becomes obvious when another person tries to move the individuals arm, which will move only in ratchet-like or short, jerky movements known as cogwheel rigidity.
- Bradykinesia. This slowing down of spontaneous and automatic movement is particularly frustrating because it may make simple tasks difficult. The person cannot rapidly perform routine movements. Activities once performed quickly and easilysuch as washing or dressingmay take much longer. There is often a decrease in facial expressions.
- Postural instability. Impaired balance and changes in posture can increase the risk of falls.
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Are There Differences In Parkinsons Treatment Between Men And Women
All current treatment options address PD symptoms, but they do not slow down or stop the progression of PD. Levodopa, often prescribed as Sinemet, is considered the gold standard therapy for Parkinsons movement symptoms. However, many people with PD experience changes in the effectiveness of the drug as the disease progresses. And some studies suggest that women are more likely than men to report these fluctuations earlier in the disease course and more frequently overall.
In particular, it seems that women are more likely to have involuntary movements called dyskinesias that occur when levodopa levels are highest in the blood. There are several factors that could be contributing to dyskinesia, including dosage, body weight and age of onset. Lower body weight can affect how medications build up in someones system. Lighter people sometimes need a smaller dose of medication to feel its effect. On average, women weigh less than men. If women and men are receiving similar doses, this may explain how levodopa levels are causing dyskinesias.
Physicians have also suggested that they find it harder to fine-tune Parkinsons medications for women than for men. Women more often experience large swings in symptoms from even small changes in medications or schedules.
Do Symptoms Get Worse
PD does not affect everyone the same way. The rate of progression and the particular symptoms differ among individuals.
PD symptoms typically begin on one side of the body. However, the disease eventually affects both sides, although symptoms are often less severe on one side than on the other.
Early symptoms of PD may be subtle and occur gradually. Affected people may feel mild tremors or have difficulty getting out of a chair. Activities may take longer to complete than in the past. Muscles stiffen and movement may be slower. The persons face may lack expression and animation . People may notice that they speak too softly or with hesitation, or that their handwriting is slow and looks cramped or small. This very early period may last a long time before the more classical and obvious motor symptoms appear.
As the disease progresses, symptoms may begin to interfere with daily activities. Affected individuals may not be able to hold utensils steady or they may find that the shaking makes reading a newspaper difficult.
People with PD often develop a so-called parkinsonian gait that includes a tendency to lean forward, taking small quick steps as if hurrying , and reduced swinging in one or both arms. They may have trouble initiating movement , and they may stop suddenly as they walk .
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Unique Characteristics Of Young
Although Parkinson’s is similar among people of all ages, those with young-onset PD generally have slower disease progression. They also tend to experience more side effects from dopaminergic medications and are more likely to have dyskinesias in response to the drug levodopa. Dyskinesias are abnormal, involuntary movements. They appear like a dance with wiggling movements of arms, legs, body or face.
Other problems associated with PD, such as memory loss, confusion, and problems with balance tend to occur less often in people with young-onset Parkinson’s. However, as with PD in older patients, the disease severity and symptoms vary from person to person.1,2
Stooping Or Hunching Over
Are you not standing up as straight as you used to? If you or your family or friends notice that you seem to be stooping, leaning or slouching when you stand, it could be a sign of Parkinson’s disease .
What is normal?If you have pain from an injury or if you are sick, it might cause you to stand crookedly. Also, a problem with your bones can make you hunch over.
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What Is Parkinsons Disease
Parkinsons disease is a progressive brain disorder that affects mobility and mental ability. If you or a loved one has been diagnosed with Parkinsons, you may be wondering about life expectancy.
According to some research, on average, people with Parkinsons can expect to live almost as long as those who dont have the condition.
Sidebar: Ninds Steps Up Pursuit Of Pd Biomarkers
In 2012, the NINDS dramatically accelerated efforts to identify biomarkers by establishing the Parkinsons Disease Biomarkers Program . This unprecedented program unites a range of stakeholders from basic and clinical researchers to healthcare professionals, the NINDS staff, information technology experts, and people living with PD and their families.
PDBP supports research and builds resources aimed at accelerating the discovery of biomarkers to ultimately slow the progression of PD. For example, the program has established a repository of biological specimens and a Data Management Resource system maintained by the NIH Center for Information Technology. The DMR allows researchers to access clinical, imaging, genetic, and biologic data, while a complementary PDBP-supported project develops statistical tools to analyze vast quantities of data so that patterns can be identified across these diverse sources of information.
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Related Diagnosis: Lewy Body Dementia
Current research is helping to differentiate dementia related conditions in relationship to Parkinsonâs disease. Doctorâs use a 12-month arbitrary rule to aid in diagnosis. When dementia is present before or within 1 year of Parkinsonâs motor symptoms developing, an individual is diagnosed with DLB. Those who have an existing diagnosis of Parkinsonâs for more than a year, and later develop dementia, are diagnosed with PDD.
In the simplest terms, Lewy bodies are abnormal clumps of proteins that develop in nerve cells. Cholinesterase inhibitors, medications originally developed for Alzheimerâs disease, are the standard treatment today for cognitive DLB and PDD symptoms. Early diagnosis is important, as DLB patients may respond differently than Alzheimerâs disease patients to certain drug, behavioral, and dementia care treatments.
This challenging, multi-system disorder involving movement, cognition, behavior, sleep, and autonomic function requires a comprehensive treatment approach to maximize the quality of life for both the care recipient and their caregiver. It is very important to pay attention to symptoms of dementia and to search for an expert clinician who can diagnose the condition accurately.
Whats Different About Young
The age of diagnosis matters for a variety of reasons, from probable causes of early cases to symptoms and treatment:
- Genetics. As with any case of Parkinsons disease, the exact cause is usually unknown. That said, The young-onset cases of Parkinsons disease are, on average, a bit more likely to be familial or genetic, says Gregory Pontone, M.D., director of the Johns Hopkins Movement Disorders Psychiatry Clinic.
- Symptoms. In many patients with YOPD, dystonia is an early symptom. People with YOPD also report more dyskinesia . They also tend to exhibit cognitive problems, such as dementia and memory issues, less frequently.
- Progression. Patients with young-onset Parkinsons appear to have a slower progression of the disease over time, says Pontone. They tend to have a milder course, staying functional and cognitively intact for much longer.
- Treatment. Most patients with Parkinsons take the medication levodopa. However, other drugs, such as MAO-B inhibitors, anticholinergics, amantadine, and dopamine receptor agonists, may be used before levodopa.
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Importance Of Exercise In The Lives Of People With Parkinsons Disease
Exercise is very important for healthy living. For people with PD, exercise is more than healthy- it is a vital component to maintain balance, mobility, and activity of daily living.
Exercise and physical activity can improve many motor and non-motor PD symptoms. These benefits are also supported by research.
The Parkinsons outcomes project shows that people with PD who start exercise at an early stage and exercise for a minimum of 2.5 hours a week, experience a slower decline in quality of life compared to those who start later. Establishing early exercise habits is essential to overall disease management.
Young Onset Parkinsons : An Introduction
Although the average age to develop Parkinsons is around 60, young onset Parkinsons occurs in 5-10% of people diagnosed. 20% are under the age of 50. Some challenges in Parkinsons are universal, regardless of age, but there are a number of issues specific to younger people.
Generally, Parkinsons proceeds more slowly in younger people. While no two people are the same, someone whose onset age is 40 can expect to work for another 15-20 years on average. For someone with an onset age of 60, the average figure would be half that. These figures are based on the kinds of treatment available today. Future treatment will be even more effective in prolonging the productive life of people with Parkinsons.
Larry Gifford hosts a panel discussion on Living Well with Young Onset Parkinsons in May of 2020.
The following characteristics tend to be present in young onset Parkinsons:
- Young onset Parkinsons is less likely to lead to dementia and balance problems
- It is more likely to include focal dystonia, which is cramping or abnormal posturing of one part of the body.
- Younger people are more sensitive to the benefits of Parkinson medications, but they tend to experience the dyskinetic side effects of levodopa sooner than older people.
- They also tend to experience dose-related fluctuations at an earlier stage of the disease, including wearing off* and the on-off effect. See Parkinson Canada Information Sheet, Parkinsons Medications: What you need to know!