Parkinson’s Awareness: Essentials on the Disease, and What You Can Do

April is Parkinson’s Disease Awareness Month, and April 11th is World Parkinson’s Disease Day. The latter marks the birthday of James Parkinson, a surgeon and scientist who identified symptoms of the disease in 1817. In over 200 years since, our familiarity and understanding have grown, but the disease still has no cure. Currently, about 10 million people worldwide are affected by Parkinson’s, with 1 million of them in the United States.

In the US, the Parkinson’s Foundation, other nonprofits, and many healthcare and eldercare providers use Parkinson’s Month to raise awareness of early signs of the disease, therapies that can ease symptoms, and resources that can increase quality of life for those suffering from Parkinson’s. Here, we answer some of the most common questions about Parkinson’s Disease, which you can discuss with family and friends or pass along to others to help raise awareness

What is Parkinson’s Disease?

Parkinson’s is a neurological disorder. The symptoms of Parkinson’s occur because the brain stops making an important chemical called dopamine. Dopamine coordinates bodily movements, so its absence creates stiffness, slowness, balance issues, and (probably its most well-known symptom) tremors. Though Parkinson’s is mostly thought of as a movement disorder, it also affects other systems in the body. It is common for those suffering from Parkinson’s to also experience cognitive and memory issues, mood disorders such as depression, loss of speech, difficulty swallowing, and digestive issues such as constipation.

Parkinson’s is a progressive disease, meaning it gets worse over time. Therapies and interventions can help lessen the severity of symptoms, if the disease is caught early.

What causes Parkinson’s?

Parkinson’s is partly—but not always—genetic, with up to 15% of cases showing the expected genetic mutations, and the rest not. Some environmental factors seem to be connected to developing Parkinson’s, such as head trauma and exposure to the chemical trichloroethylene (TCE), which can be found in some paint strippers, cleaners, and adhesives. Certain pesticides and herbicides also seem to be linked to developing Parkinson’s, which is reflected in the VA’s list of presumptive conditions related to Agent Orange exposure (read more here).

However, more research is needed to show direct connections between these risk factors and development of the disease. Researchers believe that the answer lies in the interaction between genetics, environment, and lifestyle. This complexity is why research is so important to beating this disease.

What are early signs of Parkinson’s?

While rare (10-20% of cases), Parkinson’s symptoms can start to appear as early as age 50. Symptoms to watch out for include tremors, issues moving your body, hunching over, trouble sleeping, constipation, long term loss of smell, dizziness or fainting, and “masked face,” which refers to developing a (new) resting facial expression of seriousness or anger. Another, lesser known symptom of Parkinson’s is handwriting becoming small and cramped, a disorder called micrographia.

There are five stages of Parkinson’s Disease that neurologists use to categorize progression:

• • Stage 1: Only one side of the body is affected, and symptoms (like stiffness of limbs) are so mild that they often go unnoticed.
  • Stage 2: Symptoms continue to be mild, but now, both sides of the body are affected.
  • Stage 3: Symptoms start to become more noticeable. Balance and walking become more difficult, as do fine motor tasks like buttoning a shirt.
  • Stage 4: Walking is mostly impossible without an assistive device, and most patients need help with ADLs.
  • Stage 5: Walking is impossible, and the patient is fully reliant on care.

Every case is different, and some individuals affected by Parkinson’s will have more obvious, external symptoms (like tremors) than others. Memory, digestion, and other indicators can sometimes show more severe effects early on, while the patient continues to be able to walk.

Where are we on a cure?

Research has focused on identifying biological markers in Parkinson’s patients. These markers include gene mutations and the presence or clumping of certain proteins in the brain. Clinical trials use those findings to design therapies—largely drug-based—to discover what works to reverse or interfere with the markers.

Collaboratives like the Parkinson’s Progression Markers Initiative (PPMI), specialized departments at several US universities, and agencies such as the National Institute of Neurological Disorders and Stroke (NINDS) are just a few of the entities working on finding a cure, as well as effective therapies and diagnostics/tests along the way.

What treatments and therapies exist for Parkinson’s?

Parkinson’s is most often treated with drugs. Several medications have been found effective in treating motor and non-motor symptoms. Dopamine replacement therapy (levodopa) has been a popular option since the late 1960s, but seven new drugs have been approved this year alone for treatment of Parkinson’s, and many options exist to treat symptoms from tremors to sleep issues to constipation.

Deep brain stimulation is a surgical intervention that places thin wires in the brain, which send electrical signals that help control movement—similar to a pacemaker, but for the brain. This treatment is most used for those with severe motor symptoms, but is not recommended for patients with advanced cognitive symptoms.

Cardiovascular exercise, such as walking or dancing, appears to help maintain mobility for longer and generally contribute to good health for those with Parkinson’s. Singing, socializing, and playing games keep those with Parkinson’s engaged intellectually and emotionally, helping with mood and cognitive symptoms.

How can I help a loved one with Parkinson’s?

Helping starts with getting educated. Visit parkinson.org to learn more about the disease, or call their helpline with specific questions. Speak to your (or your loved one’s) doctor about testing, symptoms, progression, and what to expect with a diagnosis. Look into communities (including online) where Parkinson’s patients and their loved ones discuss living with symptoms and what has worked for them.

This World Parkinson’s Awareness Day—and all month—you can raise awareness about Parkinson’s, its treatment, and research to prevent and cure the disease by sharing information and resources on social media. You can also wear the Parkinson’s Awareness symbol, a red tulip (in reference to a tulip varietal developed by Dutch horticulturist and Parkinson’s patient J.W.S. Van der Wereld), which can be found many places online as a pin or ribbon.

Among the many unpaid caregivers in the US caring for spouses, parents, and other loved ones, more of them are caring for someone with Parkinson’s, as cases are on the rise. Caregivers need support such as respite care and relevant resources. If this is you, prioritize self care to guard against compassion fatigue, and if it’s someone you know, consider how you can help with giving them a break or lightening their taskload.

If your loved one with Parkinson’s needs home care, our VetAssist mission is to make home care easily and quickly accessible for those who qualify through the VA Pension with Aid and Attendance benefit. Veterans Home Care can help you determine whether you or your loved one will be eligible to receive the benefit, which can cover some or all of the cost of home care, and we make it easy to apply. Chat with us via our website, or call us at (888) 314-6075.