This is an article that, while not about Parinson's, does suggest some interesting thoughts about the tasks before us in adjusting to our lives as Parkies. I have included the intro only. The whole article can be found at
--Ron
The "Psychological Emergency" Of New
Onset Physical Disability And Deformity <o:p></o:p>
Kamela K. Scott, Ph.D.
Kamela K. Scott, Ph.D. is a Clinical Assistant Professor in the
Department of Surgery at the University of Florida Health Science
Center, Jacksonville. Dr. Scott is a licensed Psychologist
serving the Division of Trauma / Critical Care. <o:p></o:p>
<o:p></o:p>
"Rob the average man of his life illusion, and you rob him of his happiness at the same stroke..." Herik Ibsen <o:p></o:p>
The psychological "experience" of physical disability and deformity encompasses myriad emotional reactions, a "call to arms" of one's coping repertoire and defenses, and a journey of personal challenge through the caveats of despair and loss to the ultimate reclaiming of oneself. Extreme in its significance, the psychological side to injury and healing is nonetheless minimized, if addressed at all, within the clinical domain. Perhaps this is resultant of our own incapacity, within health care, to confront our human fragility and vulnerability. In casual conversation with a colleague, the following was provided: <o:p></o:p>
I don't allow myself to relate to my patients...in caring for a patient with bilateral upper extremity traumatic amputations...if it happened to me, nothing in life would be worth living...can you imagine? A physician without hands? My career, my livelihood, all that I deem important...I can't...I won't. <o:p></o:p>
Yet the psychological side to injury and healing is paramount to physical rehabilitation and imperative to the art of practicing "good" medicine. What, then, does it mean to "experience" physical disability on the emotional level? How does one traverse the experience to arrive on the other side, not O.K. with the event but O.K. with oneself? This article provides a general overview of the psychological "experience" of physical disability, from encountering disillusionment, through the work of adaptation, to treatment considerations focusing on positive emotional recovery. Due to space constraints, discussion will be limited to new onset physical disability and deformity occurring in adulthood. The article aims to signify the importance of psychological factors in healing and recovery while challenging the practitioner-reader to evaluate his or her own perceptions of, tolerances for, and attention to the "human drama" of emotion. <o:p></o:p>
Experiencing Disillusionment <o:p></o:p>
Traumatic events occur at all times, across all socioeconomic classes, and with no particular bias for age, gender, religion, occupation, etc. Tragedy can strike, at any time, and with little or no forewarning. It is the unexpected tragedy that highlights our own beliefs — beliefs in the world at large, beliefs in ourselves, and beliefs in the cause-and-effect nature of crisis. These beliefs, or assumptions, guide our daily interactions, thoughts, and behaviors. As Janoff-Bulman2 states, tragedy forces the realistic appraisal of these beliefs and the immediate impact of their naivety: <o:p></o:p>
My world is benevolent. Even in such a good world negative events happen, even if relatively infrequently. Yet when they occur, they are not random, but rather are meaningfully distributed. They happen to people who deserve them, either because of who they are or what they did or failed to do. I am a good, competent, careful person. Bad things couldn't happen to me. <o:p></o:p>
Through tragedy, patients experience the loss of former beliefs and views that defined their existence. Cause-and-effect contingencies are challenged, as the patient realizes the lack of control he or she has in the world and the sense of meaning or loss embodied therein2. <o:p></o:p>
Denial And Intrusive Recollections <o:p></o:p>
Horowitz 3 presents a model of adaptation following sudden physical disability, which includes the following phases of recovery: outcry, denial, intrusiveness, working through, and completion. Initially, following the tragedy, the patient shifts to a state of shock or emotional "outcry". This prompts mobilization of the psychological defenses. Denial and repression are the primary defenses utilized in the face of tragedy. Patients may deny the mechanism of injury, severity of injury, the prognosis regarding level of functionality, the need for surgical interventions, and the impact of the disability — temporary or permanent — to their overall life functioning. Many times in clinical practice, I have heard the new onset paraplegic state, "I know they are wrong ... They don't know me. I'm different. I AM going to walk again!" or the survivor reporting, "Life is so wonderful ... I know I've been injured, but I'm just happy to be alive! Nothing has really changed", said as I look in the face of the twenty-one year old traumatic lower extremity amputee, fear hiding behind eyes of stoic heroism. <o:p></o:p>
Denial, initially adaptive in allowing the patient to avoid overwhelmingly painful emotional stimuli, then permits the patient to experience the tragedy in smaller, less distressing chunks2. It allows the patient to process events surrounding the trauma of disability in pieces, typically through intrusive remembering. The patient begins to experience nightmares, flashbacks or reliving of the events. Not only do recollections of the facts and images emerge, but also revisits to the emotional experience and the intense feelings of helplessness, fear, and anxiety. As Janoff-Bulman indicates, the patient's mind seeks confrontation, reevaluation, and integration of the experience through reliving and recalling. Intrusive recollections become paramount to clarification and adaptation2. <o:p></o:p>
Working Through <o:p></o:p>
Count The Losses <o:p></o:p>
New onset physical disability engenders countless losses — loss of body parts, loss of functionality, loss of self-image, loss of personal integrity. As Nemiah4 summarized: <o:p></o:p>
Hopes and aspirations must be modified income and security for his family and himself are threatened; his position in the social structure is altered; feelings of helplessness and weakness replace his former sense of strength and competence. All that...forms a person's concept of himself is jeopardized...loss may involve physical objects...and psychological entities — self-concepts, ideals, social status, etc. <o:p></o:p>
The patient is confronted with the task of grieving which, for these losses, is not unlike the grieving process outlined in Kubler-Ross' work on death and dying: Denial, anger, "why me," depression, bargaining, and ultimate acceptance of the loss5. <o:p></o:p>
The grief process may take days, weeks, months; as Langer relates, future goals and aspirations may be destroyed, "knowns" about the present challenged, to be replaced instantly with anxieties and despair for the unknown future6. Depression becomes the frequent response to the multiple losses, as described in Langer's 1995 study: Physically disabled patients were found to demonstrate two times the prevalence of major depression as the norm, with results suggesting no relationship between depression level and severity of disability6. <o:p></o:p>
Grieving And Depression <o:p></o:p>
Although widespread and uniformly documented, depression following the experience of traumatic disability remains frequently misdiagnosed and untreated. The impact of this oversight may interfere with overall effective treatment and rehabilitation7. <o:p></o:p>
As Rybarczyk, Nyenhuis, Nicholas, et al demonstrate, the incidence of physical disability, along with comorbid depression highlight the need for increased awareness and effective treatment within the domains of physical, surgical and orthopedic medicines8. <o:p></o:p>
In her work on depression and persons with disabilities, Langer identifies the following factors for consideration in effective identification and treatment of depression: <o:p></o:p>
- The future course of the condition, new losses or expected declines; <o:p></o:p>
- The amount of time since onset; <o:p></o:p>
- The issue of accompanying physical pain or discomfort; <o:p></o:p>
- Personal (premorbid) affective and cognitive style; <o:p></o:p>
- The social resources available to the person, versus the depletion of social resources; <o:p></o:p>
- The meaning of the disability to the patient in considering both Narcissistic colorations and the actual or perceived impact on functioning; <o:p></o:p>
- The meaning to others in society; <o:p></o:p>
- The personal ability to sustain hope regarding opportunities for the future as well as about any aspect of experience in life and find some sense of purpose or meaning in it; <o:p></o:p>
- The "domino" effects of disability on other factors such as financial status, environmental accessibility, quality of living, stress on existing social networks, and stressors to future social contacts, etc.; <o:p></o:p>
- The prior experience with, and meaning of, disability that may render disability meaningful as a life challenge or simply add to the strain of preexisting multiple chronic stressors upon coping resources6. <o:p></o:p>
Effective identification and management of depression is essential to the overall assessment of the patient's recovery status. Depression may underlie perceived and prolonged pain, development of secondary comorbidities such as alcohol and substance abuse, secondary gain issues, anxiety disorders, and extended hospital stays with prolonged physical recoveries9-20
The whole article can be found at
CumbyCrawfish