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.
Prevalence Of Parkinsons State
Western and Southern states appear to have lower rates of Parkinsons disease, while Northeastern and many Midwestern states have higher rates . Mississippi and Montana have the lowest rates of Parkinsons, at 5.1 per 10,000. Vermont has the highest rate of Parkinsons at 9.9 per 10,000.
Exhibit 2: Prevalence of Parkinsons Disease, by geography
Trouble Moving Or Walking
Do you feel stiff in your body, arms or legs? Have others noticed that your arms dont swing like they used to when you walk? Sometimes stiffness goes away as you move. If it does not, it can be a sign of Parkinsons disease. An early sign might be stiffness or pain in your shoulder or hips. People sometimes say their feet seem stuck to the floor.
What is normal?If you have injured your arm or shoulder, you may not be able to use it as well until it is healed, or another illness like arthritis might cause the same symptom.
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Symptoms Of Parkinson’s Disease
You can attribute the symptoms of Parkinson’s to a deficiency of a chemical in your brain called dopamine. The four classic motor symptoms of Parkinson’s include:
Shaking and tremors while you are resting is typically the first sign of Parkinson’s disease, but about one-third of patients won’t experience those symptoms. These symptoms tend to be worsened by emotional and physical stress. Sleep or moving can help reduce these issues.
Parkinson’s disease is both chronic and progressive with symptoms generally getting worse as time goes on. As it progresses, other disabilities can develop, including:
- Difficulty talking and swallowing
- A sudden inability to move,
Some sufferers also have symptoms that don’t affect their motor skills, including:
- Mental health issues such as anxiety, depression and memory loss
- Loss of smell
- Trouble sleeping, including thrashing and other sudden movements
- Change in blood pressure
The Impact Of Parkinsons Disease On Overall Health
Based on the Blue Cross Blue Shield Health Index, the overall health of those affected by Parkinsons is significantly lower than the general population. In 2017, the average BCBS Health Index for someone aged 30-64 with Parkinsons was 57, compared to 88 for the entire commercially insured population in this age range. This translates to an average of 10.7 years of healthy life lost for those with the condition compared to 3.4 years for the 30-64 population as a whole.4
Caring for someone with Parkinsons Disease
The majority of Parkinsons patients are cared for by informal caregivers, such as a family member. The physical, mental and emotional work this requires can be significant. The Impact of Caregiving on Mental and Physical Health found that caregivers have 26% poorer health compared to a benchmark population, as measured by the BCBS Health Index. In addition, a national survey conducted by the Blue Cross Blue Shield Association found that 1 in 4 unpaid caregivers are feeling more stress trying to balance work and family due to COVID-19.5
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Complications Related To Parkinsons 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.
Parkinsons 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 Parkinsons disease in the United States. During the six-year period, 64% of the participants with Parkinsons disease passed away.
The risk of death of those with Parkinsons was then compared to Medicare beneficiaries who did not have Parkinsons or any other common diseases, including:
When controlling for variables like age, race, and gender, the six-year risk of death among people with Parkinsons 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 Parkinsons disease was similar to those with hip fracture, Alzheimers 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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What Is The Prognosis And Life Expectancy For Parkinson’s Disease
The severity of Parkinson’s disease symptoms and signs vary greatly from person to person, and it is not possible to predict how quickly the disease will progress.
- Parkinson’s disease itself is not a fatal disease, and the average life expectancy is similar to that of people without the disease.
- Secondary complications, such as pneumonia, falling-related injuries, and choking can lead to death.
- Many treatment options can reduce some of the symptoms and prolong the quality of life.
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Diagnosing Early Onset Parkinsons Disease
There is no single test to detect Parkinsons. A diagnosis may be difficult and take a while. The condition is usually diagnosed by a neurologist based on a review of your symptoms and a physical exam.
A DaTscan to visualize your brains dopamine system may help confirm diagnosis. Blood tests and other imaging tests, such as an MRI scan, dont diagnose Parkinsons. However, they may be used to rule out other conditions.
Treatment Options For Early Onset Parkinsons Disease
Parkinsons treatment aims to slow the diseases progression. Medication treatment options may include the following:
- Levodopa is a chemical thats converted to dopamine in the brain. People with early onset Parkinsons may experience more negative side effects, such as involuntary movements.
- MAO-B inhibitors can help reduce the breakdown of dopamine in the brain.
- Catechol-O-methyltransferase inhibitors can help extend Levodopas effects on the brain.
- Anticholinergics can help reduce tremors.
- Amantadine may be used to improve muscle control and relieve stiffness.
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Where To Get More Information
- If you’re experiencing any symptoms and are concerned, see your GP.
- To learn more about Parkinson’s disease and to find support, visit Parkinson’s Australia or call the Info Line on 1800 644 189.
- The Shake It Up Australia Foundation partners with The Michael J. Fox Foundation to help raise awareness and funds for Parkinson’s disease research.
- The Garvan Institute of Medical Research is working hard to find ways to diagnose Parkinson’s earlier and repurpose existing drugs to slow its progress. Find out more here.
What Are The Surgical Treatments For Parkinsons Disease
Most patients with Parkinsons disease can maintain a good quality of life with medications. However, as the disease worsens, medications may no longer be effective in some patients. In these patients, the effectiveness of medications becomes unpredictable reducing symptoms during on periods and no longer controlling symptoms during off periods, which usually occur when the medication is wearing off and just before the next dose is to be taken. Sometimes these variations can be managed with changes in medications. However, sometimes they cant. Based on the type and severity of your symptoms, the failure of adjustments in your medications, the decline in your quality of life and your overall health, your doctor may discuss some of the available surgical options.
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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.
Parkinsons Disease Is A Progressive Disorder
Parkinsons Disease is a 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 and many live between 10 and 20 years after being diagnosed. However, a patients age and general health status at onset factor into the accuracy of this estimate. Age is the greatest risk factor for this condition, but young-onset Parkinsons disease, which affects people before age 50, accounts for between 10 and 20 percent of PD cases.
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.
Pharmaceuticals 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 activities of daily living and ones quality of life.
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Early Symptoms Of Parkinson’s Can Be Overlooked
Symptoms of Parkinson’s disease are divided into 2 groups: motor symptoms and non-motor symptoms.
Early non-motor symptoms can be subtle and it’s possible to overlook them as signs of Parkinson’s: for example, anxiety and depression, fatigue, loss of smell, speech problems, difficulty sleeping, erectile dysfunction, incontinence and constipation. Another sign of Parkinson’s is handwriting that becomes smaller.
Motor symptoms of Parkinson’s can include tremor , slowness of movement , muscle rigidity and instability .
It’s possible for non-motor symptoms to start occurring up to a decade before any motor symptoms emerge. Years can pass before symptoms are obvious enough to make a person to go to the doctor.
There’s no ‘one size fits all’ when it comes to Parkinson’s disease different people will experience different symptoms, and of varying severity. One in 3 people, for example, won’t experience tremor.
On average, 37 people are diagnosed with Parkinson’s every day in Australia. Parkinson’s Australia
Circumstances And Societal Engagement In Yopd And Implications For Management
In general, people with YOPD tend to have different family and societal engagements to those with late-onset PD. For example, most people diagnosed with YOPD will have a job, whereas some people with late-onset PD have already retired. Additionaly, it is not unusual that people with YOPD have young children , or may want to start a family.
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What Are The Different Stages Of Parkinsons Disease
Each person with Parkinsons disease experiences symptoms in in their own unique way. Not everyone experiences all symptoms of Parkinsons disease. You may not experience symptoms in the same order as others. Some people may have mild symptoms others may have intense symptoms. How quickly symptoms worsen also varies from individual to individual and is difficult to impossible to predict at the outset.
In general, the disease progresses from early stage to mid-stage to mid-late-stage to advanced stage. This is what typically occurs during each of these stages:
Early stage
Early symptoms of Parkinsons disease are usually mild and typically occur slowly and do not interfere with daily activities. Sometimes early symptoms are not easy to detect or you may think early symptoms are simply normal signs of aging. You may have fatigue or a general sense of uneasiness. You may feel a slight tremor or have difficulty standing.
Often, a family member or friend notices some of the subtle signs before you do. They may notice things like body stiffness or lack of normal movement slow or small handwriting, lack of expression in your face, or difficulty getting out of a chair.
Mid stage
Mid-late stage
Standing and walking are becoming more difficult and may require assistance with a walker. You may need full time help to continue to live at home.
Advanced stage
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!
Medication
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Early Onset/young Onset Parkinsons
Parkinsons can occur at any age. Early onset Parkinsons, also known as young onset Parkinsons , is defined as occurring in someone below the age of 40. Research suggests that genetics may play more of a role in early or young onset than in people who are diagnosed over the age of 40.
In early or young onset Parkinsons, the symptoms you experience and how you respond to medication may differ slightly from older onset, although for some people these can be very similar.
Motor symptoms generally respond well to medication in both young and older onset Parkinsons. In early or young onset, motor fluctuations such as dyskinesia and wearing off tend to occur earlier but they generally progress more slowly. This is thought to be due to the most commonly prescribed medication, levodopa, and for this reason, young onset is usually treated initially with alternatives to levodopa such as MAO-B inhibitors or dopamine agonists. Levodopa is generally only added in when other medications do not provide adequate symptom control.
Dystonia is also a more common early motor symptom in early or young onset, whereas some of the non-motor symptoms that occur in older onset Parkinsons, such as memory problems, are less common.
Deep brain stimulation has also been shown to be effective at an earlier stage of Parkinsons if medication no longer controls motor symptoms so well, and you may want to discuss this option with your care team. See Deep brain stimulation.
Lifespan Of Those With Parkinsons
Many people think PD automatically means a shorter lifespan, but this isnt necessarily true. The area is under-researched, and the research that has been done has yielded variable results.
A study done at the Mayo Clinic found that overall, patients with PD had similar lifespans to those without PD, but if PD dementia or dementia with Lewy bodies were present, that did contribute to increased mortality rates.1 For those with typical PD without dementia, compared to the general population, they died approximately a year earlier.1,2 PD is not a direct killer like heart attack, and there are steps individuals can take to help maintain their functioning and health.
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New Clues On Why Some People With Parkinsons Die Sooner
The American Academy of Neurology, an association of more than 22,000 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as epilepsy, dystonia, migraine, Huntingtons disease, and dementia.For more information about the American Academy of Neurology, visit http://www.aan.com.