The progression of Parkinson’s is described in five stages. Stage 1 starts at the very beginning when the early signs start to appear. Stage 5 describes the final stage of the disease, when symptoms are at their worst and a person needs around-the-clock nursing care. For some people, it can take as long as 20 years to move through all the stages.
As you move through the stages, your doctor and care team will make changes to your treatment plan. That’s why it’s important to tell your doctor about any new symptoms or differences in how you feel.
Here are some signs that may mean your Parkinson’s is progressing. If you notice these or any other changes, tell your doctor.
1. Medication not working the way it used to
In the early stages, taking medicine works well to get rid of symptoms. But as Parkinson’s progresses, your medication works for shorter periods of time, and symptoms return more easily. Your doctor will need to change your prescription.
Dr. Valerie Rundle-Gonzalez, a Texas-based neurologist, says to pay attention to how long your medicine takes to kick in and when it stops working. She says you should feel like symptoms significantly improve or are almost gone while on medication.
2. Increased feelings of anxiety or depression
Anxiety and depression have been linked to Parkinson’s. In addition to movement problems, the disease can also have an impact on your mental health. It’s possible that changes in your emotional well-being can be a sign of changing physical health as well.
If you are more anxious than usual, have lost interest in things, or feel a sense of hopelessness, talk to your doctor.
3. Changes in sleeping patterns
As Parkinson’s progresses, you can also develop problems with sleep patterns. These may not happen in the early stages, but can be noticeable later. You might wake up often in the middle of the night or sleep more during the day than you do at night.
Another common sleep disturbance for people with Parkinson’s is rapid eye movement (REM) sleep behavior disorder. This is when you start acting out your dreams in your sleep, such as verbally and physically, which can get uncomfortable if someone is sharing your bed. Dr. Rundle-Gonzalez says many times a bed partner will be the one to notice sleep problems.
REM sleep behavior disorder can also happen in people who don’t have Parkinson’s. However, if this isn’t something you’ve dealt with before, it’s likely related to your disease. There are medications your doctor can prescribe to help you sleep comfortably through the night.
4. Involuntary movements
One of the most effective and commonly used drugs for Parkinson’s is called levodopa. Over time, as you need to take higher doses for the medicine to work, it can also cause involuntary movements (dyskinesia). Your arm or leg might start moving on its own without your control.
The only way to help prevent or lessen dyskinesia is to adjust your medication levels. Your doctor may spread out doses of levodopa throughout the day in smaller amounts.
5. Trouble swallowing
Problems with swallowing don’t come right away with Parkinson’s, but it can happen at any stage. Some people may experience it earlier than others. Signs include coughing during or right after eating, feeling like food is stuck or not going down properly, and drooling more frequently.
It’s one of the main causes of death for people with Parkinson’s. When food goes into your lungs, it can trigger an infection, which can be deadly. If you notice any changes in the way swallowing feels, tell your doctor.
There are exercises and ways to change your eating habits that can help make swallowing easier.
6. Memory or thinking problems
Having issues with thinking and processing things could mean your disease is progressing. Parkinson’s is more than a movement disorder. The disease has a cognitive part as well, which means it can cause changes in the way your brain works.
During the final stage of the disease, some people may develop dementia or have hallucinations. However, hallucinations can also be a side effect of certain medications.
If you or your loved ones notice that you’re getting unusually forgetful or easily confused, it might be a sign of advanced-stage Parkinson’s.
Treatment options are available for all stages of Parkinson’s. With the right help from your care team, you can continue to live a healthy and fulfilling life.