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As someone living with advanced Parkinson’s disease, you may think of yourself as an expert on this brain disorder. And while you certainly know a lot about it, including how Parkinson’s affects your body and your brain, there are some things that you’ve likely never heard before. Here are five surprising facts about advanced Parkinson’s disease.

  1. Hallucinations and delusions can be a side effect of the medications used to treat Parkinson’s disease, rather than a symptom of disease progression.
    It can be challenging to know how much — and how fast — Parkinson’s disease is progressing. For someone with the disease, having an out-of-body experience like a hallucination or a delusion can be frightening. But research shows that these experiences are in most cases a reaction to Parkinson’s disease medications, and do not point to disease progression.
  2. People with advanced Parkinson's are more likely to experience life-threatening complications.
    Because Parkinson’s affects your central nervous system, complications related to the disease can lead to life-threatening events. For instance, you may have more trouble swallowing because of advanced Parkinson’s, which could increase the risk of food or fluids getting into your lungs and potentially causing pneumonia. If these related illnesses are left untreated, or are untreatable, it can increase a person’s risk of dying.
  3. An advanced Parkinson’s diagnosis typically happens after a person has already lost some of their motor skills.
    It can be hard to pinpoint the exact moment you thought to yourself, “Maybe it’s Parkinson’s.” While the disease largely affects your brain, it’s your body that tends to be impacted first. Tremors, stiffness, and loss of movement or mobility are just some of the disease’s first warning signs. Advanced Parkinson’s can cause these symptoms to worsen over time.
  4. Studies show that certain regions of the United States include more people with Parkinson’s than others.
    Where you call home may point to how many of your neighbors have Parkinson’s disease, too. Studies have found that the prevalence of the disease is 2 to 10 times higher in the Midwest and Northeast regions of the United States. On top of this, metropolitan cities tend to have more diagnosed patients than rural counties.
  5. Parkinson’s is not a death sentence, even though it’s a progressive disease.  
    Yes, Parkinson’s is a progressive disease, which is why many doctors may tell you that you’ll have it until the end of your life — but that doesn’t necessarily mean it will cause the end of your life. Because the disease is often diagnosed later in someone’s life, and advances thereafter, the majority of those diagnosed with the disease are already getting on in years.
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Similar to other progressive diseases, Parkinson’s disease is categorized into different stages. Each stage explains the development of the disease and the symptoms a patient is experiencing. These stages increase in number as the disease increases in severity. The most commonly used staging system is called the Hoehn and Yahr system. It focuses almost entirely on motor symptoms.

People with Parkinson’s disease experience the disorder in different ways. Symptoms can range from mild to debilitating. Some individuals may transition smoothly between the five stages of the disease, while others may skip stages entirely. Some patients will spend years in Stage One with very few symptoms. Others may experience a faster progression to the end stages.

Stage One: Symptoms affect only one side of your body.

The initial phase of Parkinson’s disease typically presents with mild symptoms. Some patients will not even detect their symptoms in the earliest phases of this stage. Typical motor symptoms experienced in Stage One include tremors and shaking limbs. Family members and friends may begin to notice other symptoms including tremor, poor posture, and mask face or loss of facial expression.

Stage Two: Symptoms begin affecting movement on both sides of your body.

Once the motor symptoms of Parkinson’s disease are affecting both sides of the body, you have progressed to Stage Two. You may begin having trouble walking and maintaining your balance while standing. You may also begin noticing increasing difficulty with performing once-easy physical tasks, such as cleaning, dressing, or bathing. Still, most patients in this stage lead normal lives with little interference from the disease.

During this stage of the disease, you may begin taking medication. The most common first treatment for Parkinson’s disease is dopamine agonists. This medication activates dopamine receptors, which make the neurotransmitters move more easily.

Stage Three: Symptoms are more pronounced, but you can still function without assistance.

The third stage is considered moderate Parkinson’s disease. In this stage, you’ll experience obvious difficulty with walking, standing, and other physical movements. The symptoms can interfere with daily life. You’re more likely to fall, and your physical movements become much more difficult. However, most patients at this stage are still able to maintain independence and need little outside assistance.

Stage Four: Symptoms are severe and disabling, and you often need assistance to walk, stand, and move.

Stage Four Parkinson’s disease is often called advanced Parkinson’s disease. People in this stage experience severe and debilitating symptoms. Motor symptoms, such as rigidity and bradykinesia, are visible and difficult to overcome. Most people in Stage Four aren’t able to live alone. They need the assistance of a caregiver or home health aide to perform normal tasks.

Stage Five: Symptoms are the most severe and require you to be wheelchair-bound or bedridden.

The final stage of Parkinson’s disease is the most severe. You may not be able to perform any physical movements without assistance. For that reason, you must live with a caregiver or in a facility that can provide one-on-one care.

Quality of life declines rapidly in the final stages of Parkinson’s disease. In addition to advanced motor symptoms, you may also begin experiencing greater speaking and memory issues, such as Parkinson’s disease dementia. Incontinence issues become more common, and frequent infections may require hospital care. At this point, treatments and medicines provide little to no relief.

Whether you or a loved on is in the earliest or the later stages of Parkinson’s disease, remember that the disease isn’t fatal. Of course, older individuals with advanced-stage Parkinson’s disease may experience complications of the disease that can be deadly. These complications include infections, pneumonia, falls, and choking. With proper treatment, however, patients with Parkinson’s can live as long as those without the disease.