What to ask when changing treatment for Parkinson's disease

Parkinson’s disease is a disorder that causes the loss of nerve cells called neurons. Neurons can be thought of as the body’s communication cells—they send and receive messages between the brain and the body, and also produce neurotransmitters, chemicals that enable messages to pass from one neuron to another.

Parkinson’s disease is a disorder that causes the loss of neurons in the region of the brain that controls movement. This includes voluntary movements, like taking a step or lifting an object. It also includes involuntary movements, like blinking the eyelids and breathing. The primary symptoms of Parkinson’s disease involve movement, though the disorder can cause a wide range of symptoms that can affect nearly every aspect of a person’s health.

Parkinson’s disease is a progressive disorder, meaning symptoms worsen with time. In the early stages, symptoms are typically mild. In later stages, symptoms become more severe and have a much greater impact on a person’s life, and the lives of their loved ones.

While there is no cure for Parkinson’s disease, there are therapies that can ease symptoms and help improve a person’s quality of life. Because of the progressive nature of the condition, treatment will need to evolve over time. As a person living with Parkinson’s disease or a caregiver, you should be prepared to discuss treatment options and changes to a treatment plan with your healthcare providers.

Treatment for Parkinson’s disease

Although everyone’s treatment plan is a bit different, a treatment plan for Parkinson’s disease will typically include the following:

• Medications that increase or mimic neurotransmitters (chemicals that enable neurons to communicate) are a mainstay of treatment and can help control motor symptoms. Because these medications cause side effects, they are typically paired with additional medications to help ease side effects.
• Therapies to manage nonmotor symptoms. This can include medications to help with things like fatigue, constipation, and sleep disturbances, as well as working with physical therapists and occupational therapists.
• Support is an important part of treatment. This can include steps like following an exercise program, working with a mental health professional, and participating in a support group. These steps can also be of great benefit to caregivers.

Surgery

In some cases, Parkinson’s disease may be treated with deep brain stimulation (DBS). This approach involves the surgical implantation of an electrical device. This device stimulates specific regions of the brain. DBS can help reduce motor symptoms and side effects caused by Parkinson’s disease medications. It may also help reduce some nonmotor symptoms, including pain, sleep disturbances, and problems with bladder control.

What to ask when changing treatment

Here are some questions to ask your healthcare provider when you are discussing a new medication, surgery, or another type of therapy for any aspect of Parkinson’s disease:

Questions when discussing a new medication

These questions can apply to a medication for motor symptoms, nonmotor symptoms, and other conditions that require treatment. Some of these questions may also be helpful if you are discussing physical therapy, occupational therapy, nutrition therapy, or working with a mental health professional:

• What is the name of the medication? What dosage will I be prescribed?
• What is the goal of taking this medication?
• How is the medication taken? How often? How long will I be taking this medication?
• How will we know if the medication is working? What happens if this medication does not work?
• What potential side effects can this medication cause? Is there a risk of serious side effects?
• How will I feel when taking this medication?
• Can this medication interact with other medications? Always tell your healthcare provider about all medications you are taking, including medications for other conditions, over-the-counter medications, and supplements.
• Is there anything I need to avoid while taking this medication? For example, certain foods or activities?
• What is the out-of-pocket cost of this medication? Who can I talk to if I have concerns about the cost?

Questions when discussing surgery

These questions can apply to surgery for deep brain stimulation and surgical procedures for nonmotor symptoms or other conditions:

• What is the goal of this procedure?
• What potential risks or side effects are involved?
• What will the recovery process be like?
• What healthcare provider will perform this procedure?
• Are there alternatives to this procedure?
• Do I need any tests or exams before this procedure?
• What will the procedure cost?