How Long Can I Live With Parkinson’s Disease

New Clues On Why Some People With Parkinson’s Die Sooner

Date:

American Academy of Neurology

Summary:

New research shows how old people are when they first develop Parkinson’s disease is one of many clues in how long they’ll survive with the disease.

New research shows how old people are when they first develop Parkinson’s disease is one of many clues in how long they’ll survive with the disease. The research is published in the October 5, 2010, print issue of Neurology®, the medical journal of the American Academy of Neurology.

The 12-year study included 230 people with Parkinson’s disease, of whom 211 died by the end of the research. “Remarkably, time to death for these people took anywhere from two to 37 years from diagnosis so it’s important we try to identify those risk factors that lead to an early death so we can find ways to increase a person’s life expectancy,” said Elin Bjelland Forsaa, MD, with Stavanger University Hospital in Norway and a member of the American Academy of Neurology.

The average time from the appearance of movement problems to death was 16 years. The average age at death was 81.

The study found that the risk of earlier death was increased about 1.4 times for every 10-year increase in age when symptoms began. People with psychotic symptoms, such as delusions and hallucinations, were also 1.5 times more likely to die sooner compared to those without these symptoms.

The study also found that taking antipsychotic drugs or drugs for Parkinson’s disease had no negative effect on survival.

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How Can We Manage Hallucinations

It may not be necessary to treat all hallucinations of a person with PDD. Hallucinations are often harmless, and it is okay to allow them to happen, as long as they are not disruptive or upsetting to the person or surroundings. Sometimes, recognizing the hallucination and then switching the topic might be an efficient way of handling frustrations that occur because of a hallucination. If hallucinations need medical treatment, your provider may be able to discuss and suggest some options. However, many of the medications used to treat hallucinations may make movement symptoms worse.

Normal Cognition Early In Pd Predicted Normal Life Expectancy

Parkinson’s disease patients who had normal cognitive function at the start of a prospective, community-based study had a largely normal life expectancy, researchers reported.

But Parkinson’s disease patients who had early freezing of gait, severe hyposmia, cognitive impairment, or subtle inflammation in their cerebrospinal fluid had a significantly shorter life span, reported David Backstrom, MD, of Umea University in Sweden, and colleagues in Neurology.

Action Points

• Patients with Parkinson’s disease who have mild disease and normal cognition at onset have a mortality rate equivalent to that of the general population, according to a Swedish study of 182 patients with new-onset, idiopathic parkinsonism.
• Recognize that patients with incident parkinsonism have overall reduced survival, but that the survival is highly dependent on the type and characteristics of the parkinsonian disorder.

“The prognosis of Parkinson’s disease and parkinsonism is best studied by long-term follow-up of community-based incident cohorts,” Backstrom told MedPage Today. Mortality among Parkinson’s disease patients can be highly variable, and “this study provides a better characterization of the neurobiological factors that are associated with short survival in Parkinson’s disease.”

Disclosures

Editorialists reported relationships with CurePSP, Biogen, AbbVie, American Parkinson’s Disease Association, the Rutgers Foundation, and UBS.

Primary Source

Neurology

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What Makes Pd Hard To Predict

Parkinsonâs comes with two main buckets of possible symptoms. One affects your ability to move and leads to motor issues like tremors and rigid muscles. The other bucket has non-motor symptoms, like pain, loss of smell, and dementia.

You may not get all the symptoms. And you canât predict how bad theyâll be, or how fast theyâll get worse. One person may have slight tremors but severe dementia. Another might have major tremors but no issues with thinking or memory. And someone else may have severe symptoms all around.

On top of that, the drugs that treat Parkinsonâs work better for some people than others. All that adds up to a disease thatâs very hard to predict.

Managing Stress And Enhancing Spiritual And Emotional Wellbeing

Physical or emotional stress can make it hard for our body to cope with illness or disease, so it is not surprising that it can worsen Parkinsons symptoms, particularly tremor. Living with Parkinsons can cause additional worry and frustration, so learning to manage stress and being able to relax is important for maintaining a good quality of life.

There is increasing recognition that good spiritual health enhances general wellbeing. Following a spiritual path can help give a sense of hope for the future it may also help in adapting to life with Parkinsons. The most important thing is to try to stay positive and there are lots of things you can do to help with this. There are also many techniques and treatments available to support emotional wellbeing. Each person will respond to these in different ways so talk with your doctor if you think you need help and he or she will be able to advise.

See also Stress and Emotional and spiritual wellbeing.

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How Is Parkinsons Disease Diagnosed

Diagnosing Parkinsons disease is sometimes difficult, since early symptoms can mimic other disorders and there are no specific blood or other laboratory tests to diagnose the disease. Imaging tests, such as CT or MRI scans, may be used to rule out other disorders that cause similar symptoms.

To diagnose Parkinsons disease, you will be asked about your medical history and family history of neurologic disorders as well as your current symptoms, medications and possible exposure to toxins. Your doctor will look for signs of tremor and muscle rigidity, watch you walk, check your posture and coordination and look for slowness of movement.

If you think you may have Parkinsons disease, you should probably see a neurologist, preferably a movement disorders-trained neurologist. The treatment decisions made early in the illness can affect the long-term success of the treatment.

How Does A Person With Parkinsons Feel

Symptoms start gradually, sometimes starting with a barely noticeable tremor in just one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement. In the early stages of Parkinsons disease, your face may show little or no expression. Your arms may not swing when you walk.

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Complex Parkinson’s Disease And Palliative Care

Complex Parkinson’s disease is defined as the stage when treatment is unable to consistently control symptoms, or the person has developed uncontrollable jerky movements .

These problems can still be helped by adjustment or addition of some of the medications used to treat Parkinson’s disease, under the supervision of a doctor with a specialist interest in Parkinson’s disease.

As Parkinson’s disease progresses, you’ll be invited to discuss the care you want with your healthcare team as you near the end of your life. This is known as palliative care.

When there’s no cure for an illness, palliative care tries to alleviate symptoms, and is also aimed at making the end of a person’s life as comfortable as possible.

This is done by attempting to relieve pain and other distressing symptoms, while providing psychological, social and spiritual support for you and your family.

Palliative care can be provided at home or in a hospice, residential home or hospital.

You may want to consider talking to your family and care team in advance about where you’d like to be treated and what care you wish to receive.

How Do I Prevent Falls From Common Hazards

• Floors: Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its usual place.
• Bathroom: Install grab bars and non-skid tape in the tub or shower. Use non-skid bath mats on the floor or install wall-to-wall carpeting.
• Lighting: Make sure halls, stairways, and entrances are well-lit. Install a night light in your bathroom or hallway and staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
• Kitchen: Install non-skid rubber mats near the sink and stove. Clean spills immediately.
• Stairs: Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it might be helpful to arrange most of your activities on the lower level to reduce the number of times you must climb the stairs.
• Entrances and doorways: Install metal handles on the walls adjacent to the doorknobs of all doors to make it more secure as you travel through the doorway.

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Medications For People With Parkinsons Disease

Symptoms of Parkinsons disease result from the progressive degeneration of nerve cells in the brain and other organs such as the gut, which produce a neurotransmitter called dopamine. This causes a deficiency in the availability of dopamine, which is necessary for smooth and controlled movements. Medication therapy focuses on maximising the availability of dopamine in the brain. Medication regimes are individually tailored to your specific need. Parkinsons medications fit into one of the following broad categories:

• levodopa dopamine replacement therapy
• dopamine agonists mimic the action of dopamine
• COMT inhibitors used along with levodopa. This medication blocks an enzyme known as COMT to prevent levodopa breaking down in the intestine, allowing more of it to reach the brain
• anticholinergics block the effect of another brain chemical to rebalance its levels with dopamine
• amantadine has anticholinergic properties and improves dopamine transmission
• MAO type B inhibitors prevent the metabolism of dopamine within the brain.

Is Parkinsons Disease Fatal

It is important to understand that PD is not considered a fatal condition. As is the case with Alzheimers disease and other forms of dementia, complications and a patients comorbid conditions are more life-threatening than PD itself. For example, because Parkinsons affects movement, balance and coordination, a patients risk of falling increases as the disease progresses. Falls are notoriously dangerous and a leading cause of injury and death among older adults. Difficulty swallowing, known as dysphagia, is another complication that can develop at any point throughout ones journey with PD, and this can cause aspiration pneumoniaanother leading cause of death in patients.

Read:Dysphagia: How to Help a Loved One Eat and Drink Safely

Because a persons overall health is an important factor in how Parkinsons progresses, lifestyle choices are vitally important for prolonging both functionality and longevity. Regular exercise, a healthy diet, careful management of preexisting conditions and prevention of new medical issues is crucial.

It is important to work with a well-rounded medical team to understand PD symptoms, explore treatment options and devise a personalized care plan for improving ones overall health, maintaining a high quality of life, and preventing complications.

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What Is Parkinson’s Disease

Parkinson’s disease is the second most common neurodegenerative disorder and the most common movement disorder. Characteristics of Parkinsons disease are progressive loss of muscle control, which leads to trembling of the limbs and head while at rest, stiffness, slowness, and impaired balance. As symptoms worsen, it may become difficult to walk, talk, and complete simple tasks.

The progression of Parkinson’s disease and the degree of impairment vary from person to person. Many people with Parkinson’s disease live long productive lives, whereas others become disabled much more quickly. Complications of Parkinsons such as falling-related injuries or pneumonia. However, studies of patent populations with and without Parkinsons Disease suggest the life expectancy for people with the disease is about the same as the general population.

Most people who develop Parkinson’s disease are 60 years of age or older. Since overall life expectancy is rising, the number of individuals with Parkinson’s disease will increase in the future. Adult-onset Parkinson’s disease is most common, but early-onset Parkinson’s disease , and juvenile-onset Parkinson’s disease can occur.

Myth : Parkinsons Is Only A Motor Condition

Fact: While its true that Parkinsons disease symptoms include shaking and tremor, rigid muscles, slowness of movement, and a frozen or flat expression, its a lot more than that.

Nonmotor symptoms deserve and are getting more attention from doctors and researchers. These symptoms include cognitive impairment or dementia , anxiety and depression, fatigue, sleep problems and more.

For some patients, nonmotor symptoms are more disabling than motor symptoms, which are the focus of treatment. Be sure to talk to your doctor about other issues so you can get all of your symptoms addressed.

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Searches And Data Extraction

A PubMed search was conducted in April 2006 for articles published in English using the following search terms: AND NOT WolffParkinsonWhite Syndrome .

Of the retrieved articles, 54 containing original LE, mortality or survival data were selected for further review. Articles were excluded if they did not provide LE or SMR estimates, or did not use PD diagnosis as the outcome. Studies beginning after 1984 were preferred so that the use of levodopa medication was widespread, as it is now. All articles were evaluated by one of the authors and data on SMRs, stratified by age or sex, collected. For the analysis of LE compared with the 2003 actuary data, only articles from the UK and, as the number of UK studies reporting age specific data was limited, Western Europe were included.

Hospice Eligibility For Parkinsons Disease

Due to the progressive nature of Parkinsons disease, it can be challenging for families to know when their loved one is eligible for the support of hospice care. If a loved one has been diagnosed with six months or less to live or if they have experienced a decline in their ability to move, speak, or participate in the activities of daily living without caregiver assistance, it is time to speak with a hospice professional about next steps.

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Mean Life Expectancy In Patients With Pd Compared With The General Population

The estimated changes in LE compared with the general population for a range of possible SMR values, stratified by age and sex, using the Gompertz function and the 2003 UK mortality rates, are presented in table 2. Calculated LEs ) and AAD ) were compared between patients with PD and the UK general population. The graphical comparisons show that LE and AAD are considerably shorter or earlier in patients with age at onset before 50years compared with the general UK population. This difference decreases with increasing age in females and males. The mean LE of patients with PD with onset between 25 and 39years was 38 years, corresponding to an AAD of 71 years compared with an LE of 49 and AAD of 82 years in the general population. The mean LE of patients with PD with onset between 40 and 64years was 21 years, resulting in an AAD of 73 years compared with an LE of 31 and an AAD of 83 years in the general population. The mean LE for older individuals with PD was 5 years, resulting in an AAD of 88 years compared with an LE of 9 years and an AAD of 91 years in the general population. The SMR calculations were the same for both sexes, and therefore changes in LE were the same, but the actual LE and AAD estimates were higher in women because they live longer, on average, than males in the general population.

Is Alzheimers Related To Parkinsons

Alzheimers disease and Parkinsons disease are generally considered to be separate and distinct disease entities. However, a considerable amount of evidence demonstrates that these disorders share common clinical and neuropathologic features and that overlap between the two conditions is extensive.

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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.

What Medications Are Used To Treat Parkinsons Disease

Medications are the main treatment method for patients with Parkinsons disease. Your doctor will work closely with you to develop a treatment plan best suited for you based on the severity of your disease at the time of diagnosis, side effects of the drug class and success or failure of symptom control of the medications you try.

Medications combat Parkinsons disease by:

• Helping nerve cells in the brain make dopamine.
• Mimicking the effects of dopamine in the brain.
• Blocking an enzyme that breaks down dopamine in the brain.
• Reducing some specific symptoms of Parkinsons disease.

Levodopa: Levodopa is a main treatment for the slowness of movement, tremor, and stiffness symptoms of Parkinsons disease. Nerve cells use levodopa to make dopamine, which replenishes the low amount found in the brain of persons with Parkinsons disease. Levodopa is usually taken with carbidopa to allow more levodopa to reach the brain and to prevent or reduce the nausea and vomiting, low blood pressure and other side effects of levodopa. Sinemet® is available in an immediate release formula and a long-acting, controlled release formula. Rytary® is a newer version of levodopa/carbidopa that is a longer-acting capsule. The newest addition is Inbrija®, which is inhaled levodopa. It is used by people already taking regular carbidopa/levodopa for when they have off episodes .

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