Table 2.

Categories of Fears expressed in PD-PROP (N = 225). Quotes are copied verbatim from the participant’s response, in the format Bothersome Problem [Impact on Function]

Domain	Subthemes	Example Quotes	% (n)
Relationships/Social	Impact on family/being a burden	“My daughters worry about my health causing me to worry about them”“My fear of becoming a burden on my family. [We have a “high performing” family and I don’t want to be a drag on their potential]”	10.2% (23)
	Others’ perceptions	“tremor. [difficulty typing, using keyboard mouse, afraid what people think]”“the hardest part is that I’m still hiding this disease from everybody. But if I tell people I have Parkinson’s disease they’ll just stare at me and I don’t know if I’ll get the right support in at least in my workplace. It bothers me the most that this movement disorder makes people stare and not understand how difficult.”	10.2% (23)
	Social isolation	“Afraid to leave your home. [Always in isolation]”“Negative effect on relationships leading to isolation and depression.. [I haven’t changed, but people, understandably, treat me differently. I am perceived as a liability now, not an asset.]”	10.2% (23)
Dependence	Disability	“I will end up immobile and require professional assistance such as living in a care facility”“Fear of husbands health failing or of him dying and knowing that I can’t live alone, and knowing I am no longer independent.. [Causes depression, and then I do not function well, knowing that if I fall I cannot help myself up and neither can my husband. Fear makes me want to do nothing and it is a fight to keep going.]”	7.1% (16)
Prognosis/progression	Uncertainty about future	“This is actually the worst problem with my PD = fear of progression and the future”“PD consumes my thoughts. [I changed my outlook on life. Worry about future]”	26.7% (60)
	Fears of death/dying	“Thinking about dying when or if it will happen soon or how long do I really have left”“Possibility of short life span. [Scares me.]”	4.4% (10)
	Day-to-day variability	“It is difficult to know how far you can travel not knowing if it will be a good day”“I don’t have the stamina that I once had, and I don’t linked to age. I have to leave dinners and special sports occasions because I might crash.”	4.8% (11)
Employment	Work-related	“My work and office are very accommodating but I am not sure how long I can keep this up. I fear I am a liability so I wont let them file accidents reports when I fall.”“I lost my coaching job. [My medication at the time caused liability issues for my work.]”	4.4% (10)
Personal Safety	Safety	“Can’t drive fast out of fear of hitting with road divider or surrounding vehicles or persons, can’t take sharp turning, always feel afraid of loosing control in high speed”“R hand tremor. [Using kitchen knife is scary!]”	5.8% (13)
Specific symptoms	Cognitive impairment	“I fear the future and am terrified of getting dementia”“Fear of dementia and loss of spouse relationship. [It dwells in a corner of my mind most of the time, and makes me turn to God for comfort.]”	10.6% (24)
	Falling	“Frightful of falling while dressing and walking around clutter”“Apprehension when moving cautiously about –re: possibility of stumbling or tripping and falling. [When waling down stairs]”	10.6% (24)
	Cramps/spasms	“I’m always afraid of getting cramps when I stretch.”“Spasms, facial. [Afraid the spasms will occur in a meeting]”	4.8% (11)
	Unclassifiable motor symptoms	“Trepidation about doing anything involving movement”“physical discomfort, worry”	12.4% (28)
	Bladder symptoms	“Bladder control. [Nervous of leakage]”“incontinence. [afraid of messing self, pullups are expensive]”	4.8% (11)
	Constipation	“Constipation, lack of regular bowel movements. [Anxiety about being in wrong place when bowel movements might occur]”“Constipation ibs. [Constant worry about using bathroom]”	4.8% (11)
	Sleep-related	“Loss of sleep time, anxiety about being able to fall asleep”“I get sleepy middle of the day. [I’m afraid someone will catch me zoning out..]”	4.4% (10)