Parkinson’s Patients Report Orchestrating Their Daily Lives Around Their Decreased Balance Control, Study Finds
People with Parkinson’s disease reported a need for increased planning in their lives due to limited mobility and restrictions in everyday life caused by a decrease in their balance control, a study shows.
Study participants described using specific movement and cognitive strategies as a consequence of not trusting their bodies’ capacity to control balance. Their ability to engage in social and leisure activities was also profoundly affected.
The study, “Choreographing life-experiences of balance control in people with Parkinson’s disease,” was published in the journal BMC Neurology.
Reduced balance is one of the hallmarks of Parkinson’s disease, often resulting in more frequent falls even before diagnosis.
As a result, people with Parkinson’s experience difficulties with daily tasks and activities which can lead to withdrawal from participating in daily life and social activities.
Recommended guidelines suggest supervised exercise training programs that push the limits and capacity of people with the condition. However, some of the measured improvements in balance and walking were not always consistent with the perceived improvements from the patient’s perspective. Many believed their balance and abilities could not be changed.
Few studies have explored how people with Parkinson’s perceive their balance control and the impact it has on their daily life. To help fill this knowledge gap, researchers based in Sweden designed a study to explore how people with Parkinson’s are affected by and manage their balance control problems.
The study involved in-depth interviews with 18 people with Parkinson’s between the ages of 46 and 83, who were different in sex, living status, time since diagnosis, and disease stage.
The interviews were conducted in person by a researcher and a physical therapist, mostly in the home of the participant. The participants were asked open-ended questions in a semi-structured interview format. For example, the first question was “If you were to describe to somebody that doesn’t know what it means to have [Parkinson’s], how a common day in your life is, what would you tell that person?”
The other questions focused on the concept of balance, perceived participation in activities, and falls or fear of falling, and multitasking. Finally, the participants were asked to provide any additional information. Following the interviews, they were clinically assessed using the Mini-Balance Evaluation Systems Test and a variety of other standard movement tests.
An analysis of the interview responses found an overarching theme of “increased planning,” which consisted of two categories, limitations in mobility and new restricted functioning in everyday life.
The category “limitations in mobility” had four subcategories: planning for fluctuating symptoms, public space and increase of walking limitations, conscious movement strategies, and increased attention to focus to navigate uneven terrain.
Due to a feeling of uncertainty about their physical ability, participants would have to predict when fluctuations in mobility and balance occur. Not knowing when episodes of reduced mobility happen affected their participation in everyday activities.
According to one participant, “sleep is extra important for me, if I don’t sleep enough also my balance is affected.”
Walking limitations in public spaces were described by patients who had fallen or almost fallen in public. Walking inside cluttered spaces and crowded areas would trigger balance problems.
Many participants reported a heightened awareness of basic movements such as standing up and turning around. A need to concentrate on what they were doing was a strategy used all the time or during times without medications.
“When you are out and walking otherwise, you just walk,” said one participant. “You don’t think, you don’t go on and shout orders to your feet when you walk they just go where you want them to. I kind of need to concentrate on what I am about to do.”
Increased fear of walking on ice or snow, or uneven terrain was discussed. The use of cleats, canes, and other walking aids were common strategies to feel safer, and many avoided going outside in the winter.
The category “new restricted functioning in everyday life” had three subcategories: increased tendency to avoid leisure activities, restricted personal and social freedom, and strategies to perform everyday tasks with less trepidation.
People with Parkinson’s increasingly avoided leisure activities due to a high risk of falling.
“I have a bike that I don’t dare to use any longer,” a participant said. “It’s like with an airplane, the critical moments is the take off and landing … I don’t trust my ability.”
Participants found that their reduced balance made it harder to plan, attend events, and keep social appointments, resulting in being confined to their homes. Over time, their personal freedom and social life were restricted.
“I was free to go to the store and try on clothes or shoes,” one participant said. “Go and look at something, an exhibition or concert. Meet friends and go to the movies or organize something and go together but now it is … ”
An increase in the amount of planning and the need for strategies were required to perform everyday tasks with less fear. Participants also felt the need to be more aware of their personal hygiene and activities such as getting dressed.
“The transition between sitting to doing things, make you afraid,” a participant said. “To handle the clothes. To clean up and so on, busy with both your hands. I question my balance. Is it enough? Will I manage?”
“In conclusion,” the researchers wrote, “people with mild to severe [Parkinson’s disease] experience reduced balance and this affects their ability to participate in activities of everyday life and perform dual-tasks. This resulted in participants choreographing their life around current states of mobility and balance.”
“Future research is needed on how to implement these strategies, who to target specifically, and when to target them,” they added.