We conducted eight focus groups and five one-on-one interviews between March 2007 and February 2008 ().16
Five focus groups (two groups were early age of onset, and three groups were typical age of onset) and five one-on-one interviews were conducted with 48 PD patients; the other three focus groups were conducted with a total of 15 caregivers. Of the eight focus groups and five one-on-one interviews, one typical age of onset patient focus group, one caregiver focus group, and a single one-on-one interview were conducted in Spanish; the remainder of the interviews were conducted in English.
Sociodemographic, clinical, and functional status characteristics of the study participants are shown in . shows how the final total of 1022 comments (text segments) collected from the focus group participants were distributed among the seven salient themes (physical functioning; social and role functioning; emotional impact; fears and uncertainty about the future; stigma and other feelings about PD; coping mechanisms; and benefits of PD) and across three subgroups: early onset patient (age of onset ≤ 50 years) versus typical onset patient (age of onset > 50 years); patient versus caregiver; and English versus Spanish speakers. Review of the one-on-one interview transcripts did not reveal any additional themes or contradictions to the themes and subthemes identified from the formal focus group transcript analysis.
Sociodemographic characteristics of PD focus group participants, one-on-one interviewees, and caregivers
Frequency of occurrence of each health-related quality of life theme by focus group characteristics (n = 1022 comments from 43 patient and 15 caregiver focus group participants)
In the category of physical functioning, patients and caregivers commented on a wide range of topics pertaining to challenges associated with the disease, especially concerning loss of motor control, lack of facial expression, and difficulties due to impaired cognitive functioning and processing. While the subgroups of participants presented highly shared comments regarding the most prevalent category, physical functioning (more than 40% of all 1022 comments), the intergroup difference between early and typical age at onset patients (36.8% versus 46.4%, respectively) may indicate that perhaps typical age at onset patients appear to be more concerned with the extent of their physical deterioration. In particular, it appears that typical age at onset patients (46.4%) and Spanish speakers (50.5%) had a slightly higher tendency to focus on the physically degenerative aspects of PD (see ).
Loss of the basics
The inability to do basic things in daily life constituted one of the most notable challenges related to patients’ physical functioning. Patients with caregivers seemed to have the most severe physical difficulties, usually requiring assistance in carrying out basic daily activities, such as dressing, bathing, and grooming. For patients with early and typical age at onset, the comments pertaining to physical limitations ranged from mild to moderate difficulties in movement (walking, turning or getting out of bed, falling, tremor, and dyskinesias); hygiene (grooming, bathing); manual motor skills (using utensils, handwriting, driving); and sleep (problems falling or staying asleep, nightmares, restlessness). It was common for patients to be acutely aware of their increasingly deteriorating physical functioning, as one patient succinctly pointed out by drawing a sharp comparison between life before and life after disease onset: “I used to hop, skip, and jump. Now it’s a shuffle, waddle and a stumble, literally”.
Caught behind the mask
One effect of PD is the inability to move, similar to a state of constant numbness, freezing, stiffening, or deadening of the body. A common feature noted by some patients was a lack of facial movement, akin to having a “stone face” or a “facial mask”. One patient expressed the devastating effect that the lack of facial expression, what he referred to as “mask face”, had on his relationship with his spouse, due to the fact that through facial expressions we can communicate our deepest feelings and thoughts with loved ones:
“It was really hard on her in the beginning because I had symptoms, you know, a few years before and I had the mask face and everything, and ... I’d throw water in my face because I would just be so stiff in that, and evidently she thought that I was losing interest in her, and once I got the Sinemet and we found out what happened and all the dystonia went away, you know, she cried because she thought I didn’t love her anymore. She’d say something and I’d ... be smiling at her, but she couldn’t really see it”.
The disheartening deadening of facial expression can lead to a progressive disconnect with one’s sense of identity, feelings, and thoughts, and consequently, to an agonizing alienation from loved ones. The constant stiffening of the body may lead patients to feel trapped in an alternate universe of sorts, as one caregiver described the trance-like state in which her mother would often lie, with eyes half-shut. One patient equated the underlying feeling of suddenly being alone and disconnected from the world to an experience she had being trapped in an elevator early in the morning: “I was caught in an elevator at 7:30 in the morning and it was pitch black, and nothing worked and they didn’t come and get me until an hour after that. Nobody knew I was there. And I was shaking so bad I couldn’t stand on my feet. I fell in the elevator, like, I couldn’t stand up”. Yet, far from being temporarily trapped in a pitch black elevator, PD presents the condition of an at times nonresponsive body.
Changes in social and role functioning
PD inevitably results in significant changes in the relationship between patients and caregivers. Both groups commented extensively on the category of social and role functioning, particularly on the debilitating toll that PD has on many social aspects. There appeared to be a variation between early and typical onset patients, which suggests that early onset patients may experience more difficulty accepting and coping with the social and role changes as a result of PD; a similar variation appeared across caregivers and patients (see ).
Some patients voiced their sense of a progressive alienation from the world around them, lamenting either the gradual erosion or complete loss of some relationships. One patient recognized the accumulation of losses not only in physical activities, but also in emotional wellbeing and in a close relationship, such as marriage: “Losses, yeah. I lost a job. I lost a marriage, too. That’s the painful part. And a loss of activity time. A loss of motivation ... A loss of inspiration ... So it’s all an accumulation of losses”. Moreover, one of the most compelling commonalities among patients was the sense of loss and sadness over not having the same social role they once had in relation to their family members (particularly, not being perceived as the provider, or not being able to partake in family activities or certain social events). One patient, for example, disclosed a sense of feeling obsolete in his former familial role as the provider:
“But all these little duties they’re jerking away from me. And what I don’t mind is that the toilet plunger, in the house whenever the toilet overflowed, I’m your man. When it comes to other things, whether it be driving down to the market for a gallon of milk or shoveling out the walkway so everyone gets in the house alright, these things used to be me. It’s how I identified myself. And now my little girl is, well ... she’s 26. She’s no little kid, but she’s taking over my responsibilities. And I can’t help but feel a little bit pushed, little bit obsolete because of this”.
Quite difficult to accept is the reality of having to reconstitute a new identity as a PD patient: the handyman finds himself needing a hand to do daily tasks, and the emotive consequence is that the newly formed identity as a PD patient inevitably displaces his former one as the provider.
Social networks and communication
Individuals with PD can develop hypophonia (soft voice) which, if severe enough, can adversely affect social functioning. A patient recounted his experience in losing the ability to communicate effectively with his formerly vast social network, a monthly amateur radio group, which afforded him an open line of communication with friends in many places:
“We had monthly meetings, a radio amateurs association. And I was one of the most active ones. We would get together every month and we would go everywhere. We went to Mexico; we went to many places, all of California ... And now, it’s been over a year since they last heard from me. Before, I would turn on my radio to communicate with people anywhere in the world. I have many friends. They send me letters asking why they don’t hear from me anymore. If I start to talk, I bite my lips”.
The tremendous loss for this patient was his inability to communicate verbally with his social network, now forced to partake in the physical communication of squeezing the microphone in order to indicate his presence: “Oh, I mean, I used to talk a lot with all those people in my town ... And that has affected me a lot, not being able to talk to them now. Just listen. And sometimes they tell me, ‘Hey, XXX, if you are listening, squeeze the microphone to let us know you are there’, and I just squeeze it and they hear me”. Particularly poignant is this patient’s realization that his formerly vast and vibrant social network, which brought him much joy and fulfillment, has now been reduced to the mechanical act of squeezing his hand. The loss of the ability to communicate verbally can thus lead to a loss of social networks, social roles, and self-identity.
PD patients’ progressive loss of physical ability to carry out daily tasks impacted their roles in performing their jobs. Patients conveyed feelings of disappointment and loss after having to relinquish the job they had, reduce the number of hours, or switch to a job that was not as fast paced or physically demanding. Some of the patients commented on how the worsening physical conditions of PD forced them to leave their career, among them a graphic designer, a judge, a nurse, a schoolteacher, and a professional puppeteer. In one example, a teacher felt dispossessed of the skills necessary to educate students, and due to her PD, even the simple yet basic act of reading to students proved challenging: “And it just got worse and worse and worse and worse until I had to leave the job I loved. I can’t even go in and read a story to the kids anymore. The second grade students read more fluently than I do. Where do you go with that?” A similar yet perhaps more emblematic case was that of a puppeteer who used to perform educational shows – the artist who once adroitly manipulated puppets in a powerful mastery of both motor and speech skills ultimately had to surrender to the seemingly all-consuming physical conditions of PD: “I had to give up my job. I was a professional puppeteer, and this didn’t go with the words coming out. These were educational shows ... I was speaking in the back what had to be said but ... the mouth of the puppet wasn’t working with what I was saying”. Under the advancing grip of PD, the artist who once possessed the skill of carefully concerted manual dexterity found himself captive to the uncontrollable movements of his disease.
The feelings elicited by the questions dealing with emotional wellbeing present a range of responses from both patients and caregivers. The category of impact on emotional status was shared by all participants, and it is noteworthy that the English and Spanish speakers appeared to have equal representation. One of the most notable variations could be seen within this category, in which caregivers provided comments almost twice as much as patients (11.2% versus 6.0%). One intriguing possibility for this difference is that caregivers were significantly impacted by having to face a double dilemma, ie, dealing with the patient’s emotional needs in addition to their own.
Most patients commented on their initial depression or anger upon being diagnosed, while others reported that they became overly sensitive and easily driven to tears. Some patients noted that they experienced a sense of low self-esteem and of general uncertainty about themselves. One patient, presenting what may be at first glance a humorous occurrence at a social event, revealed a sense of embarrassment upon losing control of even the most basic physical functions, such as the ability to cut food: “I shouldn’t tell you, but the other day I was at a Christmas luncheon and I was struggling trying to cut a piece of chicken ... and all of a sudden, half the chicken piece flew behind me and I hope it didn’t land in the guest speaker’s lap. At first, I truly found myself with just tears. I was so embarrassed”. The sense of embarrassment and awkwardness that is implicit in such a social context was but one facet of the complex emotions intricately tied to the physical deterioration associated with PD.
Fears and uncertainty about the future
The primary concern among PD patients was that they would become a burden to loved ones, evoking fears regarding the loss of independence. One patient evocatively compared the experience of PD, and the underlying fear over its advancement, to a roller coaster ride of sorts, the outcome of which would be unpredictable: “You know you’re on this roller coaster and you know you’re going downhill, but you don’t know whether it’s the kiddy coaster or the rocket from hell”.
The primary fear experienced by caregivers centered on the uncertainty inherent in PD, particularly with regard to the future, of how the disease would progress and its toll on both the patient and loved ones. The children of PD patients expressed concern over the possibility of developing the disease. The fear of an intensifying sense of loneliness and alienation was also expressed by caregivers who witnessed the daily battle that a patient can face in dealing with dementia and forgetfulness. One spouse attested to the poignantly painful condition of seeing how PD progressively deprived her husband of his presence of mind, for which she felt a sense of constant fear that she would no longer be able to communicate with him:
“I really worry about the dementia. I mean, the physical part, I couldn’t care less. I don’t care that he can’t walk, I’m strong, and I can manage that. It’s the dementia and the absence of my husband that I worry about terribly. I mean, I have him physically there, I can see him, and I’m happy about that. But I miss him terribly. That’s why I worry about the deterioration that way”.
In this sense, PD not only can erode a patient’s cognitive faculties and awareness, thereby transforming the patient’s sense of identity, but can also destroy the most basic communication between patients and loved ones. In the case of PD with dementia, the patient’s communication with the outside world is compromised not only by the physical impairment in speech, but also by the reduced cognitive awareness and acuity associated with dementia.
Yet fear of the future with PD also transcends the particular, at times encompassing a total sense of uncertainty and isolation from the world. One Spanish-speaking patient divulged an all-consuming fear of fear itself, so generalized and persistent that every aspect of daily life seemed plagued by a sense of unshakable uncertainty: “Fear of fear. Fear of going on the freeway. Fear of dawn. Fear of sunset. A fear that doesn’t go away”.
Stigma and other feelings about PD
The prevalent comments within the category of stigma and other feelings about PD reveal a constant preoccupation among both patients and caregivers. A sense of stigma manifested itself when the patient or caregiver had to interact in social settings or in the workplace, but not in the privacy of the home. Some patients communicated a sense of stigma induced by the physical manifestations of PD, noting that they felt embarrassed by their inability to perform physical tasks, or perceiving that others may feel sadness, anxiety, pity, shame, or even feel resentful toward them due to their disease.
Within the category of stigma and other feelings about PD, there was a notable variation between nondemented participants with PD versus demented PD patients, as judged by their caregivers’ comments, as well as between English and Spanish speakers. The finding that caregivers offered half as many comments as patients may point to the possibility that patients may feel a sense of stigma (embarrassment, shame) to a much higher degree than their caregivers. Surprisingly, not all comments related to stigma and other feelings were perceived as negative, because several patients noted how they had received overwhelming support from family and friends.
Stigma in social networks
Many patients noted that friends and family members exhibited a sense of unease, of being uncomfortable with the physical symptoms of PD. In this sense, the patients’ perceived stigma is imposed upon them from external situations in which they have a heightened sense of awareness of their physical awkwardness or inability with basic motor skills. One caregiver declared surprise that her husband wanted to reveal his disease to everyone he knew, in what she amusingly referred to as a mass mailing:
“I had to tell my husband who wanted to announce it to the world when he first found out. He got these leaflets from Parkinson’s, your friend has Parkinson’s, and your family member has it, and here’s what you’re going to see, so you shouldn’t be shocked. I was mortified! I did not want him to do this mass mailing to everybody. It’s not that I didn’t want him to say he had Parkinson’s, but I didn’t want him to make everybody feel uncomfortable or sorry for him”.
Stigma in the workplace
Stigma in the workplace appears to be a significant concern for some patients, particularly because others’ reactions to the symptoms of PD, such as tremor, may induce or exacerbate a sense of stigma in the patient. One patient expressed her embarrassment and stigma due to others’ comments, which directly contributed to her decision not to divulge that she had PD: “One person did see me shake and go, ‘Oh my god, I hope it’s not Parkinson’s’ ”. One patient conveyed frustration over having to tell or explain to others at work about the disease: “Sometimes I wish I could wear a badge that says ‘don’t ask, I have Parkinson’s disease’ ”. Another patient in this study, a health care provider, pointed to the instances of awkwardness and embarrassment in explaining to her own patients that her symptoms of PD would not interfere with her ability to perform her job:
“I work so hard trying to control my shaking that my patients wouldn’t or their families wouldn’t see it. But, you know, it got to the point where I couldn’t do that anymore. And they were very bold about it. They go, ‘how come your arm shakes?’ Well, I have a disease that requires me to take medication … you know, I want to let you know that it doesn’t affect my brain or my ability to take care of you”.
Not all feelings related to PD are negative, because patients noted that most family members, friends, and coworkers had been helpful and supportive. One patient commented how others’ reactions to her PD were positive, even in a public venue in which everyone is watching: “I tripped down the steps and everybody in the bus just went (made gasping noise) and everybody stood up to try to help me. I mean, I would’ve thought they would’ve thought that I was drunk or on drugs, or something. It was so beautiful”. In this example, the patient had the expectation that others would make her feel embarrassed and self-conscious after a fall, yet complete strangers’ desire to help without passing judgment suggested to her that others may not deliberately intend to inflict stigma.
The comments pertaining to coping mechanisms represent the third most salient category across all subgroups. The impairment of physical functioning associated with PD motivated both patients and caregivers to find creative solutions, thereby enabling both groups to cope with the reality and consequences of the disease. In comparing patients with care-givers, the former offered twice as many comments related to the category of coping mechanisms, which suggests that PD patients without dementia may be more actively engaged in their quest to find ways to mitigate the symptoms of their disease than are PD patients with cognitive impairment.
The three most identifiable coping mechanisms relate to personal attitude and mental outlook, the attempt to control the environment, or the attempt to control the signs and symptoms of PD. Most patients and caregivers reported that there are specific things they can do to mitigate the symptoms of PD, ranging from doing certain physical activities (yoga, walking, riding a stationary bicycle) to fostering positive thinking and an optimistic attitude as a way to cope with challenging situations. The latter finding coincides with a study reporting that the majority of coping mechanisms of PD patients are psychological, such as focusing on psychosocial stressors related to the disease.12
One coping mechanism noted by patients and caregivers was the need to take the medication according to an established routine, proving particularly helpful when the patient takes the medication within a specific timeframe before engaging in activities that may be demanding.
Partaking in activities outside of the daily routine could also be beneficial to patients. One caregiver, for instance, mentioned benefits associated with leaving the house, such as going to a movie once a week, or even more adventurous, going horseback riding: “It’s called hippotherapy, and she goes once a week and does physical therapy on horseback. And it blows your mind, she can’t do it in her wheelchair, but get her up on a horse, and it just amazes me what she can do, so that’s the high point of her week”. One patient expressed the sense of accomplishment for finishing a 10 km bike ride, with the help and support of family: “Now, I had to ride on the back of a tandem bike with my husband, but we did it. My daughter rode along with us. And I had to walk the last part because my legs started moving around so much I was banging it against the bike, so I had to get off and walk the last part of the ride, but I finished it”. Sheer determination and stamina can have clear benefits, among the most important being the fostering of a positive outlook and the preservation of some sense of normalcy.
Benefits of having PD
In the category pertaining to benef its of having PD, responses centered on both patients’ and caregivers’ profound appreciation for life, and on strengthening meaningful relationships with loved ones. Intergroup variations were relatively minimal. Some patients and caregivers declined to acknowledge that there could be any benefits of having PD when posed the question. However, some patients manifested a sense of relief or gratitude that they did not have a worse disease, such as cancer. One patient even jokingly referred to his disease as a strangely convenient benefit that enabled him to avoid tasks he would rather not do: “And I do use my Parkinson’s card in my favor at times when my wife asks me to wash the dishes. I’m, like, ‘you really want me to wash the dishes?’ I use it to my favor sometimes”. While quite humorous in its undertones, this perspective seems therapeutic in turning a physical impairment into an advantage. Another patient expressed a more philosophical view about living with PD, pointing out that the slowing down of physical activity has also led to a more leisurely appreciation of life and its winding path: “I always remember a saying that somebody said a long time ago, and I think Parkinson’s sort of makes you think about that is ‘life is not a race, it’s a journey to be enjoyed’. And I think it slows you down a little bit, but I think you enjoy the journey a lot more, too”.
While both patients and caregivers commented on the sense of loss that accompanies PD, members from both groups pointed out that the experience had led to the forging of closer and more meaningful relationships. One caregiver, for instance, commented on the dichotomy of balancing the negative repercussions of the physical deterioration with the more positive outcome of strengthening spousal and familial ties:
“I know that for me, it’s made me a much stronger person and I guess it’s because I have such intense feelings for my husband. He’s the love of my life and even though we have this illness which has deprived us, robbed us of so much, it has made our life so much more meaningful in many ways. While we may be restricted in many things we may do, we have a very rich wonderful life and our kids on both our sides have also been touched by that. I think it’s made all of us much closer – actually we’ve always been close – but I think this has made us appreciate each other so much more and has made us so much more empathetic toward others who may have these challenges”.
Thus, the experience of PD, while diminishing the quality of life of both patients and caregivers, also appears to sometimes enhance the sense of appreciation for life and for each other. In the face of much adversity, patients and caregivers noted the benefit of refocusing on what is important in their lives, such as love and the strengthening of their familial relationships.