PD 101
In this section we answer common and frequently asked questions to provide a high level overview of Parkinson's Disease.
What is Parkinson's disease?
Parkinson's disease (PD) is a neurodegenerative, progressive disorder that affects predominantly dopamine-producing neurons in a specific area of the brain called substantia nigra.
How Common is PD?
Nearly one million Americans and 20 million people worldwide live with PD, with approximately 90,000 people in the U.S. diagnosed with PD each year. 16,000 people are living with PD in the state of Alabama. PD is the second most common neurodegenerative condition after Alzheimer's. The number of people with PD will increase substantially over the next 20 years due to population aging.
Common Symptoms of PD
Symptoms generally develop slowly over many years. The progression is different for each person. That is why you hear a common phrase, "if you have met one person with Parkinson's, you have met one person with Parkinson's." We dive deeply into each of the symptoms under the section, Symptom Management. The most common symptoms of PD, include:
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Tremor, mainly at rest and described as pill rolling tremor in hands
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Slowness of movements (bradykinesia)
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Limb rigidity
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Gait and balance problems
In addition to movement-related (often called motor symptoms,) Parkinson's can exhibit "non-motor" symptoms such as apathy, depression, constipation, sleep behavior disorders, loss of smell and cognitive impairment. You can learn more about each of these symptoms under symptom management.
Who Gets PD?
As we age, we are all subject to some condition. Most people are diagnosed with PD in their 60s. However, in rare cases, some people before age 50, known as Young Onset PD (YOPD) can be impacted. Men are 1.5 times more likely to get PD than women.
In general, women and men diagnosed with Parkinson's experience differences in presenting symptoms, including sleep problems, cognitive impact, responses to surgery, medication side effects, emotional health, and the care partner experience. When a woman is diagnosed with YOPD, you can add challenges related to contraception, pregnancy, menstruation, menopause, hormones, body image, aging, and more to their plate.
Directly inheriting the disease is rare. Only about 10-15% of all cases of Parkinson's are thought to be genetic forms of the disease. In the other 85-90% of cases, the cause is unknown. Learn more about Genetics and PD.
Young Onset Parkinson's Disease (YOPD)
Parkinson's disease (PD) is generally diagnosed later in life and most commonly seen in people over the age of 60. Of the 90,000 new cases of PD each year, roughly 10% have young onset Parkinson's disease (YOPD), being diagnosed at age 50 or younger.
While people with PD and YOPD experience similar symptoms, those with YOPD must face a unique set of challenges that come along with the diagnosis. Juggling the social, financial and mental impacts of their diagnosis at an earlier stage of life -- while also managing the symptoms of their chronic, neurological disorder -- can make their experience quite different from that of their older counterparts. Dating, parenting, and career progression are just a few of the additional concerns that someone with YOPD could be navigating.
Most people feel strongly about continuing to work after PD, which can be beneficial for many reasons, but can also present some challenges and questions. It can be hard whether or not to disclose a PD diagnosis for fear of losing a job. But thankfully, due to many disability rights, you can be protected.
Anyone diagnosed with YOPD is encouraged to plug into the many support opportunities dedicated especially to them who better understand the journey based on the age and where they are with their PD diagnosis.
How is PD Diagnosed?
Currently, there are no definitive blood tests or brain scans that can positively identify Parkinson's with certainty, except during an autopsy. However, new diagnostic skin biopsy testing is now available to help narrow which family of neurodegenerative condition's symptoms may be related to Parkinson's based on the presence of the alpha-synuclein proteins. Also, new technology is being developed utilizing a PET scan that demonstrates active alpha-synuclein proteins presence in the living brain.
In some cases, brain MRIs or CAT scans are performed to rule out a stroke or other condition, but neither of these tests reveals Parkinson's. The DaTscan is a diagnostic test that measures levels of dopamine nerve cells in the basal ganglia structures of the brain. The FDA approved it in 2011 to help differentiate a Parkinson's tremor from other types of tremor, namely familial or essential tremor.
Another way to reach a Parkinson's diagnosis is to test your responsiveness to carbidopa/levodopa, a medication that boosts dopamine in the brain and improves motor symptoms. However, your response to this medication alone does not ensure an accurate diagnosis; other conditions can improve with carbidopa/levodopa, and a placebo effect can occur in some people.
After diagnosis, many people with Parkinson's look back and realize they had non-motor symptoms years before their motor symptoms began. Early non-motor symptoms, which are often called pre-motor symptoms can include:
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Rapid eye movement sleep behavior disorder (RBD)
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Constipation
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Depression or anxiety
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Loss of smell
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Low blood pressure
How is Parkinson's Treated?
Treatment for each person with Parkinson's is based on the symptoms. Therefore, there isn't one specific regimen that is given to any given Parkinson's patient. Based on the most aggravating symptoms, one or many medications may be prescribed. Surgical therapy may also be an option. Lifestyle modifications, such as nutrition, rest, and exercise also play a key role in managing Parkinson's symptoms and progression. You can learn more about that under the website sections in this resource center: Symptom Management or Treatments and Therapies.
Currently, there are no medications that reverse the effects of Parkinson's Disease.
Sources:
Parkinson's Foundation, About Parkinson's Disease. www.parkinson.org/newlydiagnosed Accessed 11/30/2022.
Davis Phinney Foundation for Parkinson's. Every Victory Counts, Your Go-To Resource of Essential Information and Inspiration for Living Well with Parkinson's. "Manual" Sixth Edition, 2021.