The overarching theme derived from the data was: Increased planning—choreographing life. Within this overarching theme there were two categories, namely Limitations in mobility and New restricted functioning in everyday life, each with either 3 or 4 sub-categories (see Table 3). The first category examined how performance of everyday movements were affected and how certain strategies were used to stay in control with respect to participants safety and resources. The other category explored how diminishing balance control altered participation in activities in their daily and social lives. Moreover, this category expands on how participants applied strategies to perform everyday tasks to maintain independence and functioning. The participants tended to rigorously plan their life around their current state of mobility and balance. Overall, there was also an increased need for awareness in order to remain in balance and a need to choreograph each of their movements and activities.
Limitations in mobility
This category explores the increased attention and awareness needed to walk and move safely at home, in public space and in nature. The participants used strategies like planning for fluctuating mobility and increased their awareness to perform everyday movements with a focus on maintaining balance control. It further specifies the increased challenge that different exterior surfaces pose to PwPD.
Planning for fluctuating symptoms
As a result of fluctuating mobility participants had a feeling of uncertainty towards their body’s ability. At any moment, periods of reduced mobility could appear that would affect their postural stability. This could mean that participants suddenly need support to stay in balance or that walking would be more unsteady and slower on certain days. However, participants could also predict when fluctuating mobility and balance would occur, and experienced that circumstances like being tired, stressed or cold would exacerbate these symptoms.
“So sleep is extra important for me, if I don’t sleep enough also my balance is affected…” Participant 12
Balance control was experienced to be best after having exercised and when they were well medicated, and was worst during off periods, i.e. periods of bradykinesia. Consequently, the ability to control movements was then reduced, affecting how different functional movements, like standing up to stair climbing were performed. Dissimilarly, periods of dyskinesia could be perceived as easier to control than bradykinesia. Not knowing when periods of reduced mobility would come affected the ability to participate in everyday activities, as they needed to plan for periods of reduced mobility.
“I haven’t used public transport in ages. Yes due to balance and everything. When I sit down, I can sit down in the car and be so damn alert… and then when I walk out of there then I can hardly get out because I am so stiff. That’s this disease.” Participant 14
Public space and increase of walking limitations
Several scenarios were described when participants had fallen or been close to falling in situations out in the public. Walking inside and especially in stores would trigger walking disabilities, and participants would therefore become fearful of navigating interior and cluttered spaces. Some used a shopping cart or extra medication to be able to perform these tasks.
“Yes, people are in the way. I notice it in stores when I walk. It’s like coming inside after having been outside and walked with long nice steps outside and then you come in and then it’s short steps and that is how it is in stores also, even though the space is bigger.” Participant 11
Other situations that would cause problems was walking in crowded areas, like when using public transportation. To walk through a crowd and handle the unpredictability of other people would offset the rhythm of their gait. Walking through narrow spaces like turnstiles on the subway, the doors of a train or getting on the escalator would cause problems with initiation of gait, freezing symptoms and at times cause falls.
”Last time when I was walking on the escalator last Saturday and was going up, then I had a gait-stop and I wanted so much to get to the escalator but I wouldn’t quite reach it but I thought if I can grab this railing with my hand then it will come, then it pulls me away. But the legs didn’t follow…” Participant 13
Conscious movement strategies
This sub-category describes how participants had a heightened awareness towards their performance of everyday movements like raising from a chair, standing and turning around. A similarity among participants was having problems with turning in place, also for those that did not experience major difficulties with their balance per se.
”I can not move, neither turn, just take the foot and turn and put it there, without any drop-downs on support points. It goes very slow when I turn…” Participant 9
Also, less complex but common movements in everyday life were considered unsafe or worrisome. Participants were aware of when and how they needed extra support. The need for support when walking varied from using walking aids, such as a walker to walk safely or to holding on to objects in their home environment, to not needing any support at all. However, the walker was also described as an extra “thing” to handle, requiring attention, therefore, not always making walking easier. Something participants had reflected on was the need to concentrate on what they were doing, to think about how they were moving—a strategy used all the time or only in medication off-periods.
“When you are out and walking otherwise, you just walk. 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.” Participant 9
“Well, when I am about to sit down, a thought can hit me and then I stay standing. I let go of the thought, and focus on the task.” Participant 16
Increased attention and focus to navigate uneven terrain
Participants were afraid of walking on ice and snow during winter and they used strategies, like using ice-cleats to reduce their fear and to try and remain active. Use of walking aids like canes, Nordic walking sticks or having company, were common strategies to feel safer when walking throughout the year. Another strategy was being more mindful by paying close attention to the movements and condition of the surface they were navigating, to avoid slick patches and falls. Participants also avoided going outside completely due to fear of falling, affecting the ability to participate in activities especially during winter-time.
And I make sure that I use ice-cleats or sturdy shoes so that ... I plan how I will walk and then I take a stroll here in the area and look at curtains and such.” Participant 15
It was also increasingly harder to walk on uneven terrain like in the woods and on hilly footpaths, since they did not trust their ability. There was a constant need to look ahead on walking paths to have the best grip and to avoid obstacles.
”If I walk on some trail and meet somebody and so on. Then I can let people pass instead of, so that I don’t have to walk to the side because then I can be afraid of maybe falling or so…” Participant 6
New restricted functioning in everyday life
This category explore how the disease increasingly restricted the participants personal freedoms. Further, this category highlights how participants employed strategies to perform increasingly precarious everyday tasks and how they changed their participation in activities.
Increased tendency to avoid leisure activities
This subcategory relates to how PwPD increasingly avoided leisure activities that involved challenging their balance as the disease progressed. One complex activity that participants had ceased with was downhill skiing, due to its complexity and the high risk of falling, but also due to having a disease and natural aging.
“I feel unsteady and I don’t ski which I did before and that is also connected a little bit with balance but also to, yes, with the whole situation I guess you can say.” Participant 5
Participants would still try to go cross-country skiing, but mainly on flat surfaces where they could control their own speed and the risk of falling was minimal, while others stopped with this altogether. Participants continued with activities like playing tennis or golf where they adjusted their way of playing to match their physical capacity. Other activities where participants noticed that the balance had changed were when dancing or riding a bicycle.
“I have a bike that I don’t dare to use any longer. It’s like with an airplane, the critical moments is the take off and landing… I don’t trust my ability.” Participant 8
Moreover, reduced ability to walk on uneven surfaces especially when simultaneously performing other tasks made it precarious to do work in the garden.
Restricted personal & social freedom
This sub-category coincides with how reduced balance have an impact on participants’ emotional and social life. Restricted gait and fluctuating mobility made it harder to be able to plan and attend to different events, as well as keeping social appointments. This could result in participants being confined to their home or them requiring outside company in order to participate. The participants could no longer be spontaneous and this created a feeling of restricted personal freedom. Further, not being able to do the same activities as before, like visiting the town and walk around due to decreased balance capacity, had an effect on their mood.
“I was free to go to the store and try on clothes or shoes. 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…” Participant 1
Gradually the personal freedom and social life was increasingly restricted. As the disease progressed, balance control was no longer taken for granted. On the other hand, by planning beforehand and having support from others, participants could remain active.
“Now, there will be a Christmas show, then grandpa has always attended so I want to do the same for all of my children. If I can only sit down... then I have one of those chairs… a beach chair that I sit on. Then I can sit for a long time. If I want to it is possible to solve.” Participant 3
Strategies to perform everyday tasks with less trepidation
This subcategory relates to the increased amount of planning and the need for strategies to perform everyday and personal tasks with less fear and anxiety. Depending on the disability level and the prevalence of fluctuating mobility, tasks and activities in the participants’ home, even those concerning their personal hygiene, became increasingly precarious. They were required to be more aware and use extra attention when getting dressed. Another situation performed with apprehension and increased focus due to its complexity, was when participants stood up and attended to personal care after using the toilet.
“The transition between sitting to doing things, make you afraid. 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?” Participant 10
Another strategy dealing with fluctuating mobility, was to postpone certain tasks or plan to perform them mainly during on-periods. Off-periods slowed down both movements and cognitive capacity, which affected the ability to perform tasks.
“Then I can do everything, I have a list of things to do.” Participant 13
”If I sleep a little long, then … If I get up at five o’clock, then there is speed in me. Then I go up and make coffee and fix everything… But if I let it get to around seven o’clock, then I can get standing in some situation so that I tense up. The muscles all turned on I hold on to the door, or some table there, something and I don’t dare to let go because then I will take off.” Participant 11
Depending on how frequent and predictable the off-periods were, other strategies like using aids or getting assistance from someone were needed to assure that a task could be performed. Another increasingly more common strategy was to start “doing one thing at a time”. Participants reflected on the fact that they tended to only do one thing at a time and that it had been a gradual shift.
“I can feel that when it becomes too much things that should happen then I can say ’stop now, now let’s take it one thing at a time’. I can say that more often then what I did before.” Participant 6