Living with Parkinson’s disease can involve many different challenges. Tremor, stiffness, and balance problems may affect movement, while fatigue, sleep problems, mood changes, and thinking difficulties can shape daily routines in less visible ways.

Recently, we asked MyParkinsonsTeam members which challenge currently has the biggest impact on their daily life. Their comments showed that movement and nonmovement symptoms often overlap, while fatigue emerged as an especially common concern. Member poll results reflect individual experiences and aren’t medical guidance.

Movement symptoms topped the poll, but nonmovement symptoms were close behind.

Members frequently mentioned balance, stiffness, fatigue, sleep, and memory problems. Some also described a challenge the poll choices didn’t fully capture, such as having to explain unpredictable limitations to people who may only see them on a “good” day.

Movement symptoms were the most common challenge in the poll. Members described stiffness, muscle weakness, slower walking, balance problems, and increasing reliance on mobility aids.

One MyParkinsonsTeam member shared: “Walking with a walker began as soon as I was diagnosed. Was shocking … feeling so dependent so soon and so limited in activities. I feel like I’m 94, but I am only 74.”

“Walking with a walker began as soon as I was diagnosed. Was shocking … feeling so dependent so soon and so limited in activities.”

 

— A MyParkinsonsTeam member

Another described how several movement concerns can overlap: “Stiffness in my knees and legs. Very disconcerting when your balance is off. My physical therapy worked on me getting off the floor this morning in the event of a fall.”

Changes in balance and mobility can affect confidence as well as everyday activities. If falls or movement changes are becoming more frequent, a healthcare professional can help assess what may be contributing. Physical therapy (PT) or occupational therapy (OT), mobility aids, and medication reviews may be part of that conversation.

Learning how others with Parkinson’s navigate symptoms such as mobility challenges may also help.

Other common themes around movement symptoms included:

Nearly 4 in 10 respondents chose nonmovement symptoms. Fatigue stood out in the comments, sometimes alongside poor sleep, memory problems, or difficulty organizing thoughts.

One member said: “Extreme fatigue is by far the worst for me. I used to have high energy, but now my life has become small. No longer capable of traveling, and even small social interactions have become limited.”

“Extreme fatigue is by far the worst for me. I used to have high energy, but now my life has become small.”

 

— A MyParkinsonsTeam member

Another MyParkinsonsTeam member described how sleep problems can affect the entire day: “Lack of sleep has been the hardest and most challenging issue I have. I’m tired all the time, and therefore my energy level is low, and I can’t seem to get anything done.”

Sleep problems are also common in Parkinson’s, and poor sleep can worsen daytime fatigue and make it harder to concentrate. Keeping notes about sleep, energy, medication timing, and symptoms may help you and your healthcare professional look for patterns.

Members of MyParkinsonsTeam have shared many better-sleep strategies as well.

Other members described how memory or decision-making had become more difficult, especially when they were tired or stressed. Parkinson’s can affect attention, memory, language, and problem-solving, so cognitive changes are worth bringing up with your care team.

Other common themes around nonmovement symptoms included:

About 9 percent of respondents said getting needed care or support was their biggest challenge. Comments showed that location, changing doctors, caregiving demands, and limited home help could all make Parkinson’s harder to manage.

One MyParkinsonsTeam member living in a rural area described trying to manage major family stresses while also finding new care: “I’m not sure how to get more in-home help. Plus, I am having to get a new neurologist. The one I had been going to left in the spring.”

Another member described a long wait to get care for their spouse: “My husband’s [primary care provider] put in an ‘urgent’ referral, but the first appointment they would give him was five months away. … So, except here, I have no one to ask questions of.”

“My husband’s [primary care provider] put in an ‘urgent’ referral, but the first appointment they would give him was five months away.”

 

— A MyParkinsonsTeam member

Support needs can vary widely. Some people need transportation or home assistance, while others may need better access to specialists or more social connection. A social worker, care coordinator, or local aging and disability resource center may be able to help identify options.

One member shared positive experiences with coordinated support through the Program of All-Inclusive Care for the Elderly (PACE): “What has been a godsend for me is becoming involved with my local PACE program twice weekly. They provide transportation to the center and appointments, breakfast, lunch, and leftovers. They also provide PT, OT, general activities, and interactions with others who have various medical and mental needs.”

Other common themes around care and support included:

The “something else” responses highlighted how difficult Parkinson’s can be to explain to other people. Symptoms may fluctuate, and friends or family may see someone only when medication is working well or symptoms are less noticeable.

One MyParkinsonsTeam member explained: “I don’t like talking about the details of my symptoms or the difficulty of day-to-day fluctuations and unpredictable responses to medication. Others see me when my meds are optimized; otherwise, I stay home when I’m ‘off.’”

Another described frustration with the way other people react in public: “I have a hard time with all of the uncaring folks around. Since retirement, I only get out for groceries, etc., and it makes me feel bad with people’s impatience and rudeness.”

“Since retirement, I only get out for groceries, etc., and it makes me feel bad with people’s impatience and rudeness.”

 

— A MyParkinsonsTeam member

These experiences show that living with Parkinson’s can involve social and emotional challenges alongside physical symptoms. Sharing specific needs with trusted people may make it easier for them to understand how symptoms change throughout the day.

Other common themes included: