Who Gets Parkinson’s Disease
About 1 million people in the United States have Parkinson’s disease, and both men and women can get it. Symptoms usually appear when someone is older than 50 and it becomes more common as people get older.
Many people wonder if you’re more likely to get Parkinson’s disease if you have a relative who has it. Although the role that heredity plays isn’t completely understood, we do know that if a close relative like a parent, brother, or sister has Parkinson’s, there is a greater chance of developing the disease. But Parkinson’s disease is not contagious. You can’t get it by simply being around someone who has it.
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Much more can be found in a powerful new edition of Davis Phinney Foundations free Every Victory Counts® manual. The Every Victory Counts;manual gives people living with Parkinsons, their care partners and their family members the tools they need to take control of their own Parkinsons treatment through a proactive approach to self-care.
Its jam-packed with up-to-date information about everything Parkinsons, plus an expanded worksheets and resources section to help you put what youve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.
Request your copy of the new Every Victory Counts manual by clicking the button below.
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 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.
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.
A Reflection On Parkinsons
Alda, who announced he had Parkinsons in 2018, thinks back to the moment he was diagnosed, and describes how one particular symptom that of acting out ones dreams led him to suspect he had the condition.
I had dreamed somebody was attacking me, and in the dream I threw a sack of potatoes at him. In reality, I threw a pillow at my wife, he says.
On finding that his nocturnal activities were in fact an unusual, early sign of Parkinsons, the star insisted on being seen and tested by a neurologist who initially doubted he had the condition.
He tells the AARP: A lot of people hear they have Parkinsons and get depressed and panicky and dont do anything, just hoping itll go away. Its not going to, but you can hold off the worst symptoms.
But, with his usual upbeat approach, the six-time Emmy award winner, who follows an exercise regime comprised of boxing, walking and biking, asserts Its not the end of the world when you get this diagnosis.
The New York-born Alan Alda is best known for his role as Hawkeye Pierce in the war sitcom M*A*S*H, as well as for roles in the The West Wing, The Aviator, and most recently, the award-winning Netflix film, Marriage Story. His hit podcast, Clear+Vivid with Alan Alda, launched in 2018 and focuses on the art of connection and communication.
Lead image credit: Stuart Hay, ANU
What Is Parkinson’s Disease
Parkinsons disease occurs when;brain cells that make dopamine, a chemical that coordinates movement, stop working or die. Because PD can cause tremor, slowness, stiffness, and walking and balance problems, it is called a movement disorder. But constipation, depression, memory problems and other non-movement symptoms also can be part of Parkinsons. PD is a lifelong and progressive disease, which means that symptoms slowly worsen over time.
The experience of living with Parkinson’s over the course of a lifetime is;unique to each person. As symptoms and progression vary from person to person, neither you nor your doctor can predict which symptoms you will get, when you will get them or how severe they will be. Even though broad paths of similarity are observed among individuals with PD as the disease progresses, there is no guarantee you will experience what you see in others.
Parkinsons affects;nearly 1 million people in the United States;and;more than 6 million people worldwide.
For an in-depth guide to navigating Parkinsons disease and living well as the disease progresses, check out our;Parkinsons 360 toolkit.
What Is Parkinson’s Disease?
Dr. Rachel Dolhun, a movement disorder specialist and vice president of medical communications at The Michael J. Fox Foundation, breaks down the basics of Parkinson’s.
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What Not To Say To Someone With Parkinsons Disease
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We all do itwe all say that thing, putting our foot in our mouths, and then immediately regret it. We tend to do it more often when we dont know what is acceptable to say and ask. Every diagnosis, Parkinsons included, has its own vocabulary and no-no’s when it comes to communication.
The good news is that youre reading this! Thats a great first step. Read on to see what weve found are key questions to avoid when talking with someone with PD.
Response To Parkinsons Drugs
After examining you, and depending on the severity of your symptoms, your specialist may suggest you take medication for Parkinsons. If your symptoms improve after taking Parkinsons medication for a few weeks or months, your specialist may confirm a Parkinsons diagnosis. However, some people with other forms of parkinsonism will also respond well to these drugs.;
Your specialist may suggest you have a scan to help make a diagnosis. However, scans alone cant make a definite diagnosis of Parkinsons, so they are not commonly used.
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Research The Causes Of Parkinson’s
While “What causes Parkinson’s?” is a great question to ask, its probably best to not ask this of someone who lives with PD. Instead, Google it. Do your homework. Then, if you read an article and come across something that you have a question about, pose that question to your loved one. You could say, I have been researching Parkinsons in order to learn more about what youre living with. I came across an article that says such-and-such. Would you be open to talking about what your take on that is? Or, What do you think of that?
Let them decide how much they want to talk about Parkinsons with you. For some, it might be a comfort knowing that you are doing your homework and learning about the disease. Others may want more privacy.
Regardless, it shows great love and kindness when we approach this, or any subject, with kindness and compassion. And, keep in mind that your loved one has good days and bad days, as we all do. Some days might be great for learning more about PD, and other days, your friend may want to just enjoy your company.
What Are The Symptoms
The four main symptoms of Parkinson’s are:
- Tremor, which means shaking or trembling. Tremor may affect your hands, arms, or legs.
- Stiff muscles.
- Slow movement.
- Problems with balance or walking.
Tremor may be the first symptom you notice. It’s one of the most common signs of the disease, although not everyone has it.
More importantly, not everyone with a tremor has Parkinson’s disease.
Tremor often starts in just one arm or leg or on only one side of the body. It may be worse when you are awake but not moving the affected arm or leg. It may get better when you move the limb or you are asleep.
In time, Parkinson’s affects muscles all through your body, so it can lead to problems like trouble swallowing or constipation.
In the later stages of the disease, a person with Parkinson’s may have a fixed or blank expression, trouble speaking, and other problems. Some people also lose mental skills .
People usually start to have symptoms between the ages of 50 and 60. But sometimes symptoms start earlier.
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What Causes Parkinsons Symptoms
The underlying cause of Parkinsons symptoms relates to a decline in the production of a brain chemical called dopamine. Many of the cells which produce dopamine are in the Basal Ganglia located in the middle of the brain. This lack of dopamine means people can have difficulty controlling their movements and moving freely.;
Table 2: Examining The Evidence
This technique involves examining the facts that support and do not support your negative thoughts. Use the evidence that is gathered to come up with a more balanced thought, as appropriate.
- Situation: Freezing in the bathroom
- Automatic Thought: Im helpless
- Evidence For: I was alone in the bathroom in the middle of the night and was unable to move
- Evidence Against: This happens quite a bit, so I planned for it. I had my cell phone in my pocket. I called my wife on the house phone, and she helped me back to bed
- Rational Response: Even though I was physically unable to move my feet, I was able to help myself out of the situation. I am not helpless
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Take Action To Improve Your Quality Of Life
When you have Parkinsons, staying healthy can feel like a full time job. It takes a lot of time and energy to exercise, eat well, sleep, track your medications, see your doctors and get the overall care you need; however, the payoff is well worth it to feel better.
The Every Victory Counts® manual includes over 34 worksheets to help you keep track of everything and can be very helpful along the way.
As youre probably starting to learn, Parkinsons is different for everyone; therefore, learn to be an advocate for your own experience every step of the way.
The Importance Of Early Diagnosis
Early detection and diagnosis is important because the treatments for PD are more effective in the early stages of the disease. In addition, physical therapy and exercise, which greatly improve symptoms and delay progression of the disease, are much easier to perform in the early stages.
Current diagnosis is made through the presence of motor symptoms; however, researchers have found that by the time motor symptoms occur, over 60% of all dopamine neurons in the basal ganglia of the brain have been damaged. Non-motor symptoms become apparent in people with PD long before motor symptoms, including sleep disturbances and loss of the sense of smell.3
Active areas of research include looking for markers in the blood, urine, or cerebral spinal fluid that reliably detect PD, called biomarkers. In addition, brain imaging tests that have high sensitivity for detecting PD are also being actively researched.4
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Take Care Of Yourself
Probably one of the most important, and sometimes difficult, things caregivers can do is to take care of themselves. This includes maintaining mental and physical health by making and keeping your own medical and dental appointments. As a caregiver, it is important to keep your job whenever possible as it provides not only financial help and possibly insurance coverage, but also a sense of self-esteem. Join a support group;for caregivers;if possible. Support groups help you meet people who are going through what you are going though, vent frustrations, give and receive mutual support, and exchange resource information and coping strategies. Whenever possible get your sleep, take breaks, make and keep social activities, and try to keep your sense of humor.
Incidence Of Parkinsons Disease
Its estimated that approximately four people per 1,000 in Australia have Parkinsons disease, with the incidence increasing to one in 100 over the age of 60. In Australia, there are approximately 80,000 people living with Parkinsons disease, with one in five of these people being diagnosed before the age of 50. In Victoria, more than 2,225 people are newly diagnosed with Parkinsons every year.
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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.
Causes Of Parkinson’s Disease
Parkinson’s disease is caused by a loss of nerve cells in the part of the brain called the substantia nigra.
Nerve cells in this part of the brain are responsible for producing a chemical called dopamine. Dopamine acts as a messenger between the parts of the brain and nervous system that help control and co-ordinate body movements.
If these nerve cells die or become damaged, the amount of dopamine in the brain is reduced. This means the part of the brain controlling movement can’t work as well as normal, causing movements to become slow and abnormal.
The loss of nerve cells is a slow process.;The symptoms of Parkinson’s disease;usually only start to develop when around 80% of the nerve cells in the substantia nigra have been lost.
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What Are My Next Steps
If your doctor doesnt diagnose Parkinsons, they can help you find out what the best next step is depending on what condition they suspect. In some cases, treatment may be as simple as changing the dosage of a medication that may be leading to Parkinsons-like symptoms.
Receiving a Parkinsons diagnosis can be overwhelming. If your diagnosis is confirmed, contact a movement disorder specialist as soon as possible. A specialist can help you develop a strategy to delay the onset of more severe disease and manage symptoms youre already experiencing.
Key Programs And Resources
The Parkinsons Disease Biomarkers Programs , a major NINDS initiative, is aimed at discovering ways to identify individuals at risk for developing PD and Lewy Body Dementia and to track the progression of the disease. It funds research and collects human biological samples and clinical data to identify biomarkers that will speed the development of novel therapeutics for PD. Goals are improving clinical trials and earlier diagnosis and treatment. Projects are actively recruiting volunteers at sites across the U.S. NINDS also collaborates with the Michael J. Fox Foundation for Parkinsons Research on BioFIND, a project collecting biological samples and clinical data from healthy volunteers and those with PD. For more information about the PDBP and how you can get involved, please visit the PDBP website.
The NINDS Morris K. Udall Centers of Excellence for Parkinsons Disease Research program supports research centers across the country that work collaboratively to study PD disease mechanisms, the genetic contributions to PD, and potential therapeutic targets and treatment strategies.
The NINDS Intramural Research Program conducts clinical studies to better understand PD mechanisms and develop novel and improve treatments.
The NINDS Biospecimens Repositories store and distribute DNA, cells, blood samples, cerebrospinal fluid, and autopsy tissue to PD researchers around the world.
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Support For People With Parkinsons Disease
Early access to a multidisciplinary support team is important. These teams may include doctors, physiotherapists, occupational therapists, speech therapists, dietitians, social workers and specialist nurses.;Members of the team assess the person with Parkinsons disease and identify potential difficulties and possible solutions.There are a limited number of multidisciplinary teams in Victoria that specialise in Parkinsons disease management. But generalist teams are becoming more aware of how to help people with Parkinsons disease.;;
How Is Parkinsons Diagnosed
Doctors use your medical history and physical examination to diagnose Parkinson’s disease . No blood test, brain scan or other test can be used to make a definitive diagnosis of PD.
Researchers believe that in most people, Parkinson’s is caused by a;combination of;environmental and genetic;factors. Certain environmental exposures, such as pesticides and head injury, are associated with an increased risk of PD. Still, most people have no clear exposure that doctors can point to as a straightforward cause. The same goes for genetics.;Certain genetic mutations are linked to an increased risk of PD. But in the vast majority of people, Parkinsons is not directly related to a single genetic mutation. Learning more about the genetics of Parkinsons is one of our best chances to understand more about the disease and discover how to slow or stop its progression.
Aging is the greatest risk factor;for Parkinsons, and the average age at diagnosis is 60.;Still, some people get PD at 40 or younger.
Men are diagnosed with Parkinsons at a higher rate than women and whites more than other races. Researchers are studying these disparities to understand more about the disease and health care access and to improve inclusivity across care and research.;
Aging is the greatest risk factor;for Parkinsons, and the average age at diagnosis is 60.;Still, some people get PD at 40 or younger.
The Michael J. Fox Foundation has made finding a test for Parkinsons disease one of our top priorities.
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