What to Expect After a Parkinson's Disease Diagnosis
For some people, a diagnosis of Parkinson’s disease (PD) may come as a shock and hard to accept; for others, the PD diagnosis is expected and they are anxious to explore treatment options. However you feel about your diagnosis, education represents an effective tool for navigating the next chapter.
Your neurologist will guide you through the diagnostic process and help you move forward, from understanding the symptoms of Parkinson’s disease stages to developing a Parkinson’s disease treatment plan that helps you maintain a high quality of life.
Because PD is a progressive disease, your doctor will monitor your symptoms to determine the stage of the disease and order appropriate treatments. Each person progresses through the Parkinson’s disease stages at a different pace. In general, the five stages of PD are based on the physical symptoms of Parkinson’s and include:
- Stage One: Mild symptoms, like a hand tremor
- Stage Two: Muscle rigidity and walking problems that affect daily activities
- Stage Three: Significant balance problems and slow movement that make it difficult to accomplish tasks like dressing or eating without assistance
- Stage Four: Inability to stand or walk without assistance or a mobility aid like a walker
- Stage Five: Severe muscle rigidity that makes it nearly impossible to stand or walk; this stage may include Parkinson’s dementia
At each stage of PD, it’s important to get the help you need to enjoy a high quality of life. Ask your doctor about physical or occupational therapy to help you manage your daily activities without assistance. In later stages of Parkinson’s disease, you may need to rely on family members or professional caregivers to assist you.
As soon as you’re diagnosed with PD, your doctor may prescribe medicine to control your PD motor symptoms. Parkinson’s symptoms are caused by low dopamine levels. Typically, people take a medicine that combines levodopa with carbidopa. These drugs promote the production of dopamine in the brain, which reduces symptoms.
Levodopa/carbidopa comes in oral form, and you’ll need to take it every day—possibly for the rest of your life. Every person responds differently to medicine, so it may take time to find the right dosage for you. Levodopa/carbidopa can cause initial side effects, such as confusion and sleepiness, that disappear as you continue taking it.
Eventually, taking levodopa/carbidopa becomes less effective at reducing PD symptoms. At that point (or even earlier in the progression of the disease, depending on your individual treatment plan), your doctor may recommend additional medications. These include:
- Amantadine, an antiviral drug that may help raise dopamine levels
- Anticholinergic drugs to treat tremor
- Dopamine agonists, drugs that act like dopamine in the brain
- COMT or MAO-B inhibitors, two types of drugs that reduce the natural breakdown of dopamine in the brain
Beyond medications, you may be a candidate for deep brain stimulation. Deep brain stimulation acts to block faulty signals in the brain, which improves movement problems.
Discuss with your doctor the benefits and short- and long-term risks of DBS based on your specific situation and symptoms.
In addition to PD treatments approved by the FDA (Food and Drug Administration), there may be new, investigational Parkinson’s disease drugs and therapies. Your doctor may talk with you about participating in a clinical trial for these therapies.
You also can adapt lifestyle habits to help you stay active and maximize your quality of life. Try these approaches:
- Eat a heart-healthy diet. Although diet does not directly improve or otherwise affect PD symptoms, by eating for heart health you can avoid developing additional health conditions like hypertension that might negatively affect your quality of life. Plus, eating well confers a sense of emotional well-being. Aim to eat plenty of fresh vegetables and fruits, lean proteins, whole grains, and healthy fats like olive oil.
- Focus on your emotional health. Being diagnosed with a progressive medical condition like PD can put you on an emotional rollercoaster. Seek out professional counseling and learn how to cope with your feelings in productive ways, such as meditation, yoga, music or aromatherapy—any activity that reduces stress.
- Make love. People with PD can still enjoy a healthy sex life, and sexual activity can relieve stress and improve mood. (If you take a dopamine agonist and develop hypersexual symptoms, talk to your doctor.)
- Stay active. To the extent possible, engage in regular exercise to boost mood and improve your overall health.
- Take care of your teeth. PD can affect facial muscles, making it difficult to clean your teeth adequately. Dental problems like loose teeth or gum disease, in turn, can make you more susceptible to infection. See a dentist regularly for oral care.
Living well with Parkinson’s disease can be challenging. With the right support from your healthcare team, family members, and friends, you can continue to make the most of life in the early stages and rely on your support system to enjoy a healthy quality of life as the disease progresses.