As the life expectancy of the American population increases, an increase in the incidence of chronic illnesses associated with an aging population, such as Parkinson's disease (PD), can be expected. The incidence of PD rises sharply as age increases (Marnila, 1992). Moreover, increasing age is the only incontestable risk factor for PD (Marnila, 1992; Tanner & Goldman, 1996). Currently, there is no cure and no known way to arrest disease progression. Treatment of PD, either pharmacological or surgical, is largely governed by the individual's degree of functional disability and discomfort (Koller, Silver, & Lieberman, 1994; Riley & Lang, 1991).
The classic clinical manifestations of PD are resting tremor, rigidity, bradykinesia, and postural instability. Tremor and bradykinesia are the most common presenting symptoms. Late manifestations include dysphagia, freezing episodes, and problems with activities requiring whole body movement, such as turning over in bed or rising from a chair (Riley & Lang, 1991). In addition, individuals with PD may exhibit cognitive changes, and experience depression, sleep disturbances, or altered sexual behavior or functioning (Cummings, 1992; Melamed, Zolden, Friedberg, Ziv, & Weizmann, 1996; Welsh, Hung, & Waters, 1997). The many life management issues individuals living with PD face are clearly highlighted in the clinical and research literature. As nurses, we know what these individuals cannot perform, but little is known about what they are doing to sustain quality in their lives. Therefore, the purpose of this study was to uncover the common practices older adults with PD use to sustain quality in their lives.
Quality of life is a complex, multidimensional construct for which no universal definition exists. However, the components of quality of life (i.e., the physical, functional, emotional, cultural, social, and spiritual domains of life) are universal regardless of the individual's level of wellness (Brown, Renwick, & Nagler, 1996). Nevertheless, the significance of each of these components to overall quality of life can vary among individuals and can vary over time. Even though this variability exists, it was the premise of this study that common practices to sustain quality of life do exist among adults with PD.
Unquestionably, PD can affect all aspects of an individual's life and have a negative effect on quality of life. Throughout the course of their illness, individuals with PD must continually make adjustments in their daily lives. Their relationship with the world is dramatically altered as they experience changes in their ability to move, speak, and, possibly, think. Qualitative studies exploring the lived experience of individuals with PD have depicted the significant day-to-day challenges these individuals confront as a result of their illness. Coping with these challenges often involves striking a compromise between the effect of the disease on their lives and the accomplishment of personal goals (Habermann, 1996; Marr, 1991; Pinder, 1988). How this compromise is accomplished so individuals with PD can maintain a good quality of life has not been well studied.
This study is based on the assumption that those who are "successfully" living with PD are learning how to sustain quality in their lives - this learning or know-how is acquired through their experience of living with PD (Benner, 1984). Therefore, for nurses to understand the significance of their experiences nurses must examine it within the context of their everyday life.
As part of everyday life, many skilled actions are performed in a habitual manner. Riding a bicycle, opening and closing doors, or turning lights on and off become "automatic." Individuals do not think about these actions, they simply perform them (Benner & Wrubel, 1989). This reflects the intelligence of the human body (Leonard, 1994). Similarly, decisions on how to act or respond in certain situations are based on a particular relationship the habitual body has established with the situation. This relationship was established through previous experiences.
Individuals become cognizant of their habitual body only during times of breakdown (Benner & Wrubel, 1989). For example, this may occur when one can no longer hold a cup of coffee without spilling it or walk through a doorway without freezing at the threshold. This is the loss of the habitual body, and it is what individuals with PD experience. As Carl (all names are pseudonyms), a 59-yearold rancher with PD, observes:
the progress of the disease is to take me away from all the things I have learned. It is as if I have to relearn the use of every muscle . . . the disease is omnipresent.
At times of breakdown, the world becomes unfamiliar for individuals with PD. Their relationship with their world (i.e., how they use things and how they relate to others) is dramatically altered. So, what do individuals with PD do when faced with the loss of their habitual body, when they constantly need to overcome obstacles before being able to complete the task at hand? The answers are in the practical knowledge acquired through living with PD. Because this practical knowledge is so embedded in the lives of individuals with PD that they are unaware of its existence, the best way to access this knowledge is by listening to their stories. Interpretive phenomenology was the method used to access and interpret their stories.
Interpretative phenomenology is a method designed to help individuals reach a deep understanding of everyday experiences. At the core of interpretive phenomenology is the role of storytelling (Benner, 1994). Storytelling permits the participants to describe and reconstruct past experiences in a way that makes sense to them. From a research perspective, interpreting life stories offers a way to gain an understanding of the human experience, of how people explain their situation, and of the meaning given to a particular experience (Sandelowski, 1994).
Purposeful sampling was used to recruit 12 individuals with idiopathic PD from a large, mid-western movement disorder clinic. Characteristics of the participants include:
* Living at home.
* Onset of idiopathic PD at or after 58 years.
* Disease duration of 1 or more but 5 or fewer years.
* No other chronic disabling illness.
* English-speaking and had intelligible speech.
* At a Hoehn and Yahr stage of 2 or more. The Hoehn and Yahr Staging Scale is based on the patient's level of clinical disability and is a close approximation of disease severity (Hoehn & Yahr, 1967; Paulson Si Stern, 1997). Modified Hoehn and Yahr staging occurs on a scale of O to 5 (Stage O = no signs of disease to Stage 5 = wheeichair bound or bedridden unless aided) (Paulson & Stern, 1997).
This study received approval from the University's Human Investigation Committee. After consent was obtained from the participants, the interview was conducted using an unstructured format. Nine participants were interviewed in their homes and three interviews were conducted in a private office at the University.
Six men and six women participated in this study. The majority were White (n = 9) and married (n = 8). Their mean age was 71.3 (range 64 to 84 years). All participants had a minimum of a high school education (mean =15 years) and two were still working full-time. The amount of assistance each participant required with activities of daily living varied from needing occasional help with dressing to home health support for bathing and cooking. Median Hoehn and Yahr stage was 2.5 (i.e., mild bilateral disease with recovery on pull test).
The audio-recorded interviews were transcribed verbatim. The interpretive method used for this study was a modification of the method described by Diekelmann, Alien, and Tanner (1989) and revised by Diekelmann (1996). Although this method is described in a linear fashion, interpretation of the data is "reflective, reflexive, and circular" (Johnson, 1997, p. 196). Initially, each interview was read in its entirety to obtain an overall understanding of the text. Themes (i.e., recurring categories of common experiences) were identified and described. Using the themes as a framework, an interpretation of each interview was written.
At this point, two researchers familiar with the content or the method, read the interview texts and written interpretations to ensure that the interpretations were supported by the data. Next, relational themes, those that cut across several texts, were identified. After relational themes were described, interpretations of the individual texts were reread to determine if contradictory data existed. Extensive documentation from the texts was used to support the relational themes. A constitutive pattern, one that was present in all interviews and demonstrated the relationships among the relational themes, was identified.
The constitutive pattern of Maintaining the Square, and the following five relational themes emerged from the participants' stories:
* Learning How.
* Accepting Limitations.
* Seeking Knowledge.
* Engaging in Meaningful Experiences.
* Living for Today.
In the interest of clarity, these themes will be discussed individually. However, there is no hierarchical order to these themes. That is, one does not need to "learn how" before one can "accept limitations." These themes co-exist and the participants constantly move back and forth among the themes. The blending of all the themes culminates in the pattern of Maintaining the Square.
Pattern: Maintaining the Square
The metaphor "Maintaining the Square" emerged from Sarah's story. Sarah and her husband gave up square dancing, an activity they loved doing together, because of the slowness of her movements, particularly when walking. Through her tears, Sarah described what PD has cost her:
I used to square dance for many, many years. But I don't anymore. ... When you have to work with 8 people, you know, you can't break down the square.
The vivid image of "breaking down the square" transcends the mere literal explanation of disrupting the dance pattern. The square represents Sarah's world and encompasses all the people and things that are important to her. Preventing this square from breaking down is Sarah's primary goal. So Sarah works at keeping up the appearance of being unaffected by PD:
You wish you didn't have it. But you have to go on ... you have no choice. You just like to try to keep upbeat. ... You don't want to have people around you that don't want to be around you.
By maintaining the square, Sarah and the other participants are preserving their sense of belonging in the only world that feels familiar to them. By preserving their familiar world, they are essentially preserving their self-identity. However, sustaining a positive self-image is complicated by the effect of PD on their appearance - the hands are tremulous, posture is stooped, the voice soft and monotone, and the face becomes expressionless - leaving the essence of self housed in a rigid and often unpredictable body.
These participants express their struggle to be recognized as the same person they always were and feel they still are. For example, Tony's sense of self is sustained by expecting family and friends to relate to him, not to his disease. In this way, Tony remains connected to his pre-illness life. He knows who he is and where he belongs. As a result, he is maintaining the square:
And he [son] . . . just acts as if I don't have any problem at all. I mean a lot of people I know just at a glance, they say "How you feeling?" And I say, "Fine." ... To let them know that I have an ailment like that would cause me to be treated specially. I'd rather be treated just like I am.
An indication that the participants are successful at maintaining the square is their ability to sustain continuity in their lives, as Mable does by sustaining her homelife:
Well, I continue doing most of my housework, not all of it ... I still do all my cooking. I do my washing and not too much ironing anymore. . , . It's just that I have that little tremor in my left side. If I could stop these tremors altogether my life would be better. But they're not too bad. I can still button my buttons.
On the other hand, John finds that maintaining continuity in his social activities is helping him keep his life as good as it can be:
You know we don't sit home and rot away . . . our friendships, the ones we've had, have certainly held up. We don't see each other as frequently as we used to. Some of them can't drive at night . . . they'd rather go to lunch than dinner . . . but that's no big deal whether you go to lunch or dinner as long as you're enjoying each other's company.
All the participants shared similar stories of their struggles to maintain the square. They all latched on to something that connected them to their familiar world and preserved their relationships with familiar people, places, or things. How they are able to maintain the square is reflected in their willingness and ability to learn, accept, seek knowledge, engage in meaningful experiences, and live for today.
Theme: Learning How
Learning and developing new skills occurs throughout life. At first, mastering a new skill is a struggle and it seems as if the unity of self and body is disrupted (Gadow, 1980). Over time, however, the new skill becomes effortless and the self and body are reunited. However, when no longer able to act as desired and when confronted with the body's inadequacies, as those with PD are, one is forced to think about the body again (van Manen, 1998). Often, it is not the body symptom that an individual first notices, but the difficulty in completing a desired task, such as putting on a coat or getting in and out of a car. Actions that were once taken for granted are now awkward and difficult to accomplish.
Individuals in this study are learning that their mind and body are no longer working in harmony (Gadow, 1980). For example, Sam is learning how to accomplish tasks that were once second nature to him. To successfully complete the routine task of getting in a car, Sam must divide the task into discrete steps and consciously execute each step:
For example, to get in a car. I open a door and I have to figure out how I'm going to do it every rime. It's not a matter of sliding into the seat and closing the door. I have to figure I'm going to lift this leg, slide my butt over, bring the other leg in, close the door, put on the seat belt. You have to reprogram yourself every time. Which I didn't realize had happened. But it's true. , . . It's all a mental strengthening, if you will.
Sonia is learning that stress exacerbates her symptoms. She is learning how to reduce stress in her life:
One of the things that bothers me the most is the writing. ..if I am going to the store and I have to sign a check . . J feel like I have a compulsion to explain the reason why my handwriting is so bad ... any kind of stress, any kind of stress makes it worse. Absolutely. And if I know that there is somebody behind me waiting, then it's worse. Like if I go to the [grocery store] I will write my check way, way before and I will leave the amount blank.
The participants are learning how to minimize their symptoms, to adapt their Komes, and to modify their daily routines. They are learning the need to be more cautious in their everyday lives and they are learning how to listen and understand their bodies' response to a variety of life situations.
Theme: Accepting Limitations
The participants are choosing to accept what Ufe has dealt them. They believe that the only reasonable option is to begin accepting and adapting to their limitations. Tony's view is shared by many of the participants when he says, Tve learned to live with it and I've learned to accept it. Much as 1 don't like it."
Parkinson's disease is a very intrusive illness, defined by Charmaz (1991) as one that "demands attention, allotted time, and forced accommodation." An intrusive illness makes one aware of its existence. For example, Tony is clearly aware of his functional limitations:
I'll do something and I'll say "Whoa! Just accept it." [For example] If I turn, make a quick turn and I'll feel myself lose my balance. And I'll say, "Whoa! " That's something there that I should have realized that I shouldn't have done. . . . I'm not dwelling on the fact that "Oh boy, you've got to really watch yourself" ... I just watch myself, that's all.
And Don is realistic in his approach to life:
Just try to do the things that you have been doing all along. If there is something you can't do - forget it. For example, I can't work ... I understand the reason for that ... I am beginning to realize there is stuff I can't do. [So I] just put up with it. Don't sweat it. You got to live!
Individuals with PD are constantly reminded of their limitations as they try to complete activities of daily living. So, a decision they must make is when to accept help from others. They do not view accepting help as a weakness, nor is it seen as giving in to the disease. For example, Sam has negotiated a mutually beneficial arrangement with his neighbor:
I made a deal with my next door neighbor... "I'll make a deal with you. I'll provide the snow blower and you provide the labor. You do yours and you do mine and we're very happy."
Acceptance, rather than resignation, can contribute to feelings of increased self-worth and personal freedom (Haase, B ritt, Coward, Leidy, & Perm, 1992). When acceptance occurs, energy is available to transcend the situation and move forward (Haase et al., 1992). These participants are accepting their limitations. They are not struggling to achieve the unattainable, reverse the impossible, or giving up (Miller, 1998). This is reflected in their ability to readjust their self-expectations to match their abilities, and to accept help from family, neighbors, and social agencies. Acceptance allows the participants to maintain the square.
Theme: Seeking Knowledge
Actively seeking and obtaining knowledge helps the participants understand what is happening to their bodies. As van Manen (1998) explains,
sometimes only a reassuring explanation is required to appease us and to help us resume or rebuild an unbroken relation with the body and thus with the world. The power of explanation is quite amazing (p. 12).
And Sam concurs:
If you have to live with it, you ought to understand what it is ... I wish someone had assured me that this is a long-range illness. ... That there is some help for it. ...But I had to learn it myself through reading. ... It took me some digging ... in the very beginning I didn't know what I had or how serious it was or what the ramifications were going to be, and as a problem solver I had to get to the bottom of that as much as I could. That was a difficult time. . . . The reaction is a "what have I got, how serious is this, and what do I do about it?"
Actively seeking knowledge reflects Bill's belief that one must take responsibility to help oneself:
I've asked repeatedly about what can I do ... I didn't know a lot about the disease until I read up on it some from the information sent out by United Parkinson Foundation. So now I know some of the things that you feel as a result of Parkinson 's. I find it useful to see how other people attack the problem and other possible means of fighting it.
These participants are willing to attend lectures, support groups, search the Internet, and read literature with the hope they will learn how to keep their life as good as it can be. Corbin and Strauss (1988) refer to this quest for and receiving of information as "information work," an expected part of the work involved in living with a chronic illness.
Theme: Engaging in Meaningful Experiences
Individuals do not exist isolated in the world. Every person is constantly engaging and being engaged by others and by things they encounter. From these encounters, individuals simultaneously give and receive meaning. All the participants shared stories about activities such as gardening, playing golf, going to work, and participating in church activities that had meaning and purpose for them. These activities allowed them to remain connected to family and friends, to feel useful, and to be challenged. By remaining engaged in a meaningful world, they are maintaining the square.
Ed and the others talk about the need to have a purpose in life. Ed finds meaning and purpose in his work. So to keep on working, Ed's trade-off is shorter work hours and scheduling appointments only in the afternoon:
The day becomes a very long day without work. . . . Quality of life, I suppose, is being able to get up, shower and shave, put on a suit and tie or jacket, go in the office, and work. I used to get down to [work at] 10, now I don't get down till 12, 12:30 sometimes. You know, in the morning after I work out and we have breakfast . . . and shower and shave . . . I'm a tired kid. ... I used to be a bull, work hours upon hours. You know, 10 hours a day, 12 hours a day. I can't do that anymore.
For Don, playing golf means much more than just hitting par. As he explains:
My golf game has gone all to hell with Parkinson's disease. I use to be a 7 handicap, now I am up to a 26 handicap but that is all right. I still enjoy the game immensely. [It's] the comradeship. [And] the fact that you never can win over the game, it is always on top of you. It is the way golf has you in its grips. It is just a game that you can't ever conquer.
Don's golf game has suffered because of the effects of PD, yet he aggressively pursues the game. It is not how well he golfs that is important, but that he can still golf. The challenge of the game gives Don a sense of purpose and accomplishment, and both are very important to his self-image. Similarly, Tony finds meaning in helping his son renovate a building:
it's been great for me because it's helped to fill in the [rime]. I know that it's helping him. And there's things that I ... don't help him with but I'm there for him, if he wants to talk things over. Maybe it's the fact that I'm needed that's what helps, that helps.
These participants found meaning in a variety of experiences. For some, engaging in social or recreational activities gave them a sense of purpose, and others found purpose in their work. Even though the type of activities varied, their experiences had many similarities. The activities were ones that primarily kept the participants busy, involved other people, and helped them feel useful and productive. "Engaging in a meaningful world enables, or creates possibility," according to Benner and Wrubel (1989, p. 22). It keeps open the possibility for learning new ways to relate to their world, thereby keeping life as good as it can be by maintaining the square.
Theme: Living for Today
Most of the participants would advise other individuals with PD to "take one day at a time, to keep on living." Focusing on "today" is not simply a way to give themselves more time to cope with their illness on a daily basis, nor does it require them to relinquish their future hopes and plans. But with an uncertain future, living for today allows the participants to temporarily set aside their fears and to seize the opportunity to enjoy life. As Ed recommends:
Keep busy. Try to ignore it. Try to live like you've always lived except, if you want to do anything, do it. You know like the Nike commercial "Just Do it" I added one word "now." Don't postpone anything. . . . Just do it, now.
Thinking about their future can be so overwhelming to individuals with PD that it can affect how they live today. As Sam remarks:
I realize psychologically that it could bear on you and it could make you depressed. Especially when you realize that it's never going to go away. ... I have refused in my own mind to look to the point where I am immobile. . . . we do as much normal activity as we possibly can. I read with my wife. We go to the movies a lot ... [and] we travel whenever both of us are in condition to do so.
By adopting the Living for Today philosophy, the present world becomes more manageable for individuals with PD. Living for today does not suppress their hope for a positive future, but rather it enables them to hold in abeyance their disappointments and their fears for the future. The participants are simply choosing not to dwell on the unknown. They are electing to focus on what they are capable of doing today.
Overall, the culmination of learning how to think and do things differently, accepting their limitations, seeking knowledge to help them understand what is happening to their bodies, engaging in experiences that are meaningful to them, and living for today enable these participants to maintain the square and, as a result, sustain quality in their lives. John summarizes the participants' philosophy of life when he advises:
live a normal life. You know, don't let the thing overwhelm you. It's not that difficult. It's not that much of a burden to carry.
Currently, these men and women are residing in a world that, most of the time, feels familiar to them, but this was not always the case. For many of the participants, their difficulties began months before they were diagnosed. They all talked about the circumstances surrounding their diagnosis, their reaction to the diagnosis, and their conscious decision to do what they could to sustain quality in their lives. They were all certain that their lives would never be the same, yet very uncertain as to how their future would unfold. Bill speaks for many of the participants when he explains:
my immediate concern was do we give up this 2 story house . . . are we going to be forced to move out right away and find other accommodations or be near a nursing home . . . [and] should I be saving everything I can in case I get in a nursing home.
Parkinson's disease caused a disruption in the lives of these participants. Initially, this sense of discontinuity impaired their ability to sustain a coherent identity, creating an inner sense of chaos, uncertainty, and hopelessness (Atchley, 1989). Eventually, in an attempt to overcome this sense of discontinuity, they developed strategies to restore optimum continuity in their lives. Optimum continuity was achieved when the rate, type, and magnitude of change that the participants experienced fit with their individual preferences, coping capability, and social obligations (Atchley, 1989; Onega & Tripp-Reimer, 1997).
According to Atchley (1989), continuity is a dynamic phenomenon that allows older adults to make adaptive choices by applying familiar strategies to handle the life changes associated with normal aging. However, continuity does not guarantee successful adjustment to age-related changes. It simply means that individuals will first try to use available resources and familiar coping strategies to adapt to life changes (Atchley, 1989; Onega & Tripp-Reimer, 1997). As individuals adapt to life changes, they strive to sustain internal and external continuity.
Internal continuity refers to the perseverance of an inner structure, one's sense of self and identity, throughout a given situation (Atchley, 1989). When a new situation occurs, a person is able to draw on remembered internal structures (e.g., individual temperament, experiences, skills, preferences) to cope with the situation. External continuity refers to the preservation of a familiar structure in one's physical and social environments. It is through the preservation of roles, relationships, and activities that the older adult is able to use familiar skills, in a familiar environment, with familiar people (Atchley, 1989).
Similar to Becker's (1993) findings in stroke survivors, participants who successfully managed the disruption caused by PD did so by identifying markers of internal or external continuity. A marker of continuity can be anything that connects them with their pre-illness life, such as an activity, skill, or relationship. For instance, simply being able to accomplish the routine activities of daily living can create a sense of continuity (Becker, 1993). Although the actual markers varied among the participants, the meaning of the markers within their lives was similar. For example, the participants described a variety of activities in which they were keeping busy, being productive, interacting with others, feeling useful, or helping others. Some of the activities included golfing, doing housework, baby-sitting the grandchildren, or offering advice to family and friends. These activities were meaningful and provided a conduit to the participants' pre-illness lives.
The ability to accept their limitations was also an important marker for these participants. When changes in their level of functioning occurred, the benchmark for normal was also readjusted. They learned to adjust their individual preferences to fit with the change in their functional ability. Robinson (1993) referred to this as making trade-offs. Sometimes making trade-offs, the letting go of something, allows individuals with a chronic illness to retain something that is important to their life story (Robinson, 1993). Ed's trade-off is shorter work hours and scheduling appointments only in the afternoon so he can continue working. For Carol, the trade-off is accepting help from others, such as meals on wheels and home health care, so she can remain in her own home and be as independent as possible. Ed, Carol, and the others learned that accepting their limitations helped them maintain the square. By maintaining the square, these participants were, in essence, maintaining continuity with their pre-illness lives. They found a way to connect the present with the past and with their view of the future.
As nurses, if we learn what contributes to the well-being of our patients and what gives them meaning and purpose in life, then facilitate ways to help them maintain this connection, we will be able to help them sustain quality in their lives. To do this, we must get to know our patients. By understanding their experiences, we will be able to help them identify activities that will increase their participation in life, rather than restrict it (Charmaz, 1983).
First, nurses must learn what relationships and activities are important to patients and why. Next, they must learn how maintaining these relationships or participating in these activities is different since the patient was diagnosed with PD. What would the patient like to be able to do or continue doing? Nurses should discuss what is practical given the patient's signs and symptoms, then agree on a reasonable and realistic goal. This goal should become one measure of treatment success.
Also, the family needs to be included in the plan of care. Living with a chronic illness touches everyone in the family. Traditional modes of being within the family structure become disrupted. By caring for the family, nurses can help them learn how to manage the daily demands of PD so they are able to maintain the connection with their familiar world.
In addition, nurses need to help those with PD establish a "livable relation with their bodies" (van Manen, 1998, p. 9). Patients are learning that the reflexive communication between their mind and body is disrupted. By helping them understand what is happening to their bodies, nurses can facilitate the development of strategies to help patients learn how to cope with and manage the loss of their habitual bodies. It is important to remember that these participants have the same goals as any healthy person - to "live life fully and to function optimally in all aspects of life" (Miller, 1992, p. 8).
There are several limitations to this study. First, each participant was interviewed only once. Because learning to live with a chronic illness is a process, multiple interviews during the course of time might have revealed a different picture of the learning-how process. Secondly, the participants were deliberately selected because the author believed they could provide detailed information about the phenomena under study. However, there is no guarantee that the stories told by these 12 participants are typical of most individuals who are living well with PD. Yet, the goal of interpreting their stories was not to generalize to all individuals with PD, but to offer "plausible insights that bring us in more direct contact with" their world (van Manen, 1990, p. 9). What these participants explained about their world is that there is a way to sustain quality in one's life despite living with a progressive chronic illness, the way to do this is by maintaining a sense of continuity with one's pre-illness life.
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