To better understand the daily challenges faced by people with Parkinson’s disease (PD), MyParkinsonsTeam conducted a survey asking members to identify the symptoms that affect their daily life the most.

This 2021 survey gathered responses from 958 individuals living with Parkinson’s disease. Respondents reported a range of disease severity. Nearly 59 percent described their Parkinson’s as mild, 29 percent as moderate, and 7 percent as severe.

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The results showed the symptoms people experience — and how much they impact daily life — can vary depending on disease severity. Read on to see what the survey uncovered about the symptoms shaping life with Parkinson’s disease.

Fatigue Was the Most Commonly Reported Symptom

MyParkinsonsTeam members reported experiencing a wide variety of symptoms, but fatigue was the most common symptom affecting day-to-day living.

One member of MyParkinsonsTeam described their experience: “I wish I could say I had enough energy to enjoy my grandchildren today or finish the chores without having to take a break! Or just feel like a normal person able to do normal activities without having to fight off the constant fatigue.”

About 63 percent of MyParkinsonsTeam members who had milder Parkinson’s symptoms reported that fatigue affects them on a daily basis, and 48 percent reported tremors.

Another member simply said, “Fatigue has been kicking my butt for a while.”

Symptoms Differed Based on Disease Severity

The symptoms that had the greatest effect on respondents’ lives differed depending on the severity of their Parkinson’s disease. Fatigue remained one of the top symptoms, regardless of whether MyParkinsonsTeam members had mild, moderate, or severe Parkinson’s.

Mild Parkinson’s Disease

About 63 percent of MyParkinsonsTeam members who had milder Parkinson’s symptoms reported that fatigue affects them on a daily basis, and 48 percent reported tremors. “I am newly diagnosed, and at-rest tremor is my main physical symptom,” said one member.

The symptoms that had the greatest effect on respondents’ lives differed depending on the severity of their Parkinson’s disease.

Another member said, “​​I went for my six-month visit yesterday, and nothing much has changed. Every indication is that this will be slow-moving. So far, it is limited to a hand tremor. I feel very grateful. The doctor said that exercise and staying involved in activities is very important.”

Moderate Parkinson’s Disease

Surveyed members reported that loss of balance increasingly affected their day-to-day living during disease progression. Those with moderate Parkinson’s disease cited fatigue (75 percent), loss of balance (71 percent), and then tremors (59 percent) as the symptoms with the greatest impact on daily living.

Severe Parkinson’s Disease

Those with severe Parkinson’s struggled the most with loss of balance (92 percent), followed by fatigue (73 percent).

Members of MyParkinsonsTeam described loss of balance in these ways:

• “The only thing that has progressed is my balance, which is not really bad, but it is obvious there is a problem.”
• “When I’m tired, it’s so easy to forget that my ‘normal’ has changed, and that I have to think about every step I take. I must recognize when I’m tired, and take a break, even if it’s not convenient. Taking an inconvenient break is a lot better than an inconvenient fall!”
• “After toppling over in my backyard, my bedroom closet, and TV room, I have a huge amount of fear of falling that I’m struggling to overcome. Physical therapy is helping.”

People with severe Parkinson’s struggled the most with loss of balance.

Respondents reported that as the severity of the disease increased, other symptoms emerged, particularly for motor symptoms.

Importance of Physical and Occupational Therapy

Besides medication, members reported that physical therapy (PT) and occupational therapy (OT) can help make symptoms more manageable. About 57 percent of survey respondents reported having been prescribed physical therapy for Parkinson’s symptoms, while 75 percent reported being prescribed occupational therapy.

Physical therapy can help people with Parkinson’s stay balanced and keep their muscles strong. It also helps you practice the back-and-forth movements your body makes when you walk.

Occupational therapy is tailored to each individual with Parkinson’s. It can help you with any daily activity that you need support with. This includes tasks related to work, hobbies, or taking care of yourself.

“PT and OT are the most helpful treatments for PD I have found,” wrote one member of MyParkinsonsTeam. Another said, “I started PT and OT, and I’m really liking it.”

Research indicates that exercise and physical activity can improve many symptoms of Parkinson’s. In addition to physical therapy and occupational therapy, you may also benefit from getting regular physical activity.

Join the Conversation

On MyParkinsonsTeam, people share their experiences with Parkinson’s disease, get advice, and find support from others who understand.

Which symptoms have the most impact on your daily life? Let others know in the comments below.