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Survey: MyParkinsonsTeam Members Share Symptoms That Affect Daily Living

Posted on December 13, 2021
Medically reviewed by
Amit M. Shelat, D.O.
Article written by
Heather Lapidus Glassner

  • Most respondents of a recent MyParkinsonsTeam survey about Parkinson’s disease (PD) said fatigue is the symptom that affects daily life the most.
  • Generally, people with mild Parkinson’s aren’t as widely affected by symptoms as those who have moderate or severe disease.
  • Many MyParkinsonsTeam members report that, as the disease progresses, loss of balance increasingly affects their day-to-day living.

A Parkinson’s disease diagnosis can significantly impact quality of life and how you perform daily activities. To better understand how symptoms affect the lives of individuals with PD, MyParkinsonsTeam conducted a survey asking members to answer questions about their most problematic symptoms.

The survey results included responses from 958 people with PD. Members reported varying degrees of Parkinson’s disease severity. While 59 percent of respondents described their PD as mild, 29 percent said they had moderate PD, and 7 percent classified their disease as severe.

Symptoms of Parkinson’s Disease From Those Who Know

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 this way: “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.”

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

Symptoms May Differ Based on Parkinson’s Severity

The symptoms respondents said had the greatest effect on their 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.

About 63 percent of MyParkinsonsTeam members who had earlier stage, milder Parkinson’s 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.

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.”

Additionally, 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. 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.”

Other symptoms that greatly affected daily life emerged as Parkinson’s severity increased, particularly for motor symptoms.

Importance of Physical Therapy

Besides medication, members reported that physical therapy (PT) and occupational therapy (OT) can help make symptoms more manageable. Fifty-seven percent of MyParkinsonsTeam survey respondents reported having been prescribed physical therapy for Parkinson’s symptoms.

Physical therapy can help with balance by allowing you to adjust your gait to compensate for any motor issues you may be experiencing. Additionally, PT may help you reinforce reciprocal patterns, which are the side-to-side and left-to-right movements that people make when walking. A physical therapist may also work with you on strength training to avoid muscle weakness.

“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.”

You may also benefit from exercises to help with Parkinson’s disease symptoms. Research indicates that exercise and physical activities can improve many symptoms of PD.

Building a Community

MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, more than 80,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease.

Are you living with Parkinson’s disease? Which symptoms have the most impact on your daily life? Share your experience in the comments below, or start a conversation by posting on MyParkinsonsTeam.

Amit M. Shelat, D.O. is a fellow of the American Academy of Neurology and the American College of Physicians. Review provided by VeriMed Healthcare Network. Learn more about him here.
Heather Lapidus Glassner has over two decades of experience in market research. She has conducted social listening and quantitative survey research across a variety of conditions. Learn more about her here.

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