Parkinson's_Disease

The Onset, Progression, and Death due to Parkinson’s disease: How do we cope' Liberty University Coun 502 David Sexton May 1, 2010 Abstract Parkinson’s disease is an ever present factor in the life of the aging. The fact that there is no known cause and no known cure only adds to the prevalence of its effects and the increasing chances of being diagnosed with it. Studies show that by the year 2040 it may become the second most prolific cause of death to the elderly. There are recognizable characteristics such as: Akinesea, Tremor, and Dementia. These bring with them physical mental and spiritual strains. There are ways to deal with the anxiety and grief that will become a part of the life of the patient and the caregiver. Factors that will be weighed and measured are preparation (fore knowledge of events and expectations and anticipatory grief) and spirituality (belief or non belief in a hereafter). Developing skills to deal with the progression of the disease and the eventuality of death help to produce closure and bring peace to the heart, mind and soul. Keywords: Parkinson ’s disease, Akinesia, Dementia, Anticipatory grief As he/she walks into the room, you see a person that once walked proud and carried themselves with an air of confidence and dignity. You see a person struggling to get down the single step from the porch to the deck of their home. They have lived and thrived in this home for many years. You see a flashback of the memories of how things used to be, but once again you are wrenched to the present. You are dealing with an elderly person that has been tragically diagnosed with the debilitating condition known as Parkinson’s disease. “Parkinson's disease received its name from James Parkinson, author of "An Essay on the Shaking Palsy" published in 1817; however, the disease and its treatments have been described as early as 5000 BC in India.”(Day, Brown, 2009,p. 40) “The prevalence of Parkinson’s disease is approximately 100 individual per 100,000 an example that is relatively uniform throughout the world.”(Rao, Huber, Bornstein ,1992,p.373) . “Parkinson’s disease (PD) is a progressive neurogenerative condition resulting from the degeneration of dopamine containing cells of the area of the brain known as the basal ganglia, specifically the substansia nigra.”(Parnhill, McMahon, 2008,p. 31) Dopamine has a wide variety of applications in the brain. It affects the way the brain controls our motor skills (most specifically fine motor skills). A shortage of dopamine results in Parkinson's disease. Dopamine is a chemical naturally manufactured by the body that controls the flow of information to the frontal lobe. The frontal lobe is responsible for our personality, our moods, our memory and our problem solving abilities. The presence of this condition has visible and physiological effects on the person and those who are responsible for their care. “Parkinson’s disease is a neurodegenerative disorder of unknown cause that affects over 1 million people in North America.” (Lang, Lozano,1992, p. 1)The fact that this disorder has no known cause also brings to it a level of anxiety not only to the individual but also to the care giver. This is not to say that they are suffering from Xenophobia (fear of the unknown), but as humans we like to have a sense of knowing or of control and a disease such as this takes away that ability. It seems from studies that, “age is the single most consistent risk factor; and with the increasing age of the general population the prevalence of Parkinson’s disease will rise steadily in the future.”(Lang et al., 1992, p.1) According to Parnhill et al. (2008) it also seems to be more prevalent in males. Although, it is found mostly in the elderly and in males, it does occur in the younger population. Whenever and to whomever it is diagnosed the promise of long and arduous days are ahead. The treatments for PD vary from pharmaceutical therapy to nutritional management and physical therapy. All of these are designed to bring about an improvement in dealing with the symptoms of the disease. As of this moment, there is no known cure and in most cases, the end result is a tragic death. “The impact of the disease is indicated by the fact that mortality is two to five times as high among affected persons as among age-matched controls, resulting in a marked reduction in life expectancy. In fact, neurogenerative diseases (Parkinson’s disease, motor neuron disease, and dementia) are projected to surpass cancer as the second most common cause of death among the elderly by the year 2040. Thus Parkinson’s disease shortens life as well as causing debility during life.”(Lang et al.,1992, p.1) Some of the ways that this disease is so debilitating is that it slowly begins to remove the individual from what they would consider the normalcy of their life. “The three most characteristic signs of PD are akinesia, rigidity and tremor. Akinesia describes the ‘slowness of movement’, the initiation of a movement being especially affected. Rigidity describes their increase in muscle tone resulting in stiffness of the limbs and manifests as ‘leadpipe’ and ‘cog-wheel’ rigidity. Lead-pipe rigidity refers to the general stiffness of a limb, which changes little as the limb, usually the arm, is moved. In cog-wheel rigidity, the arm ‘catches’ as it moves, rather as if it were controlled by a cogwheel. In addition, the patient may have a ‘dead-pan’ facial expression with loss of blinking and emotional content. Moreover, increased flexion of muscles in the upper back may cause the spine to bend forward, leading to a characteristic stooped appearance. Stooping may also be due to decreased postural reflexes, which usually function to prevent a fall. Tremor, which occurs at a frequency of four to eight hertz, primarily affects the fingers, hands and head. Tremor is most acute while the limb is at rest but improves as it is used. Tremor is often increased by fear and anxiety and disappears during sleep.” (Armstrong, 2008, p. 129) A final and possibly more devastating symptom is the presence of and continued development of dementia. “Dementia has been described as the modern epidemic of later life and the most feared diagnosis by older adults.”( Aminzadeh, Byszewski, Molnar, Eisner, Marg,2008, p.281) “PD patients have a 5-fold increase in the risk of developing dementia with the risk increasing with advancing age.” (Hindle, 2010, p. 159) “The presence of dementia further shortens survival in patients with Parkinson’s disease.” (Lang et al., 1992, p. 1) This dementia shows itself in a loss of thought process, loss of reality, and misplaced actions. The loss of thought process occurs as the individual will start discussing a topic and mid sentence lose the ability to complete the thought. The loss of reality shows itself as the individual acting out in a way that is contrary to the current situation. The misplaced actions take place when the individual behaves as if they are in another time and place. Each of these individually creates an atmosphere of frustration for the individual and the caregiver. When they are combined, they are a significant cause for concern. When dealing with an individual with dementia, the cause for concern stems from the fact that there will be times and situations that arise that will not allow the caregiver to be in constant supervision of the person with PD. This results in anxiety about the person and whether or not they will have an episode of dementia and place themselves in harm’s way. The emotional burden developed by the individual that so wants to live a normal life begins to take its toll. “Most investigators have viewed depression as the most common form of emotional disturbance in PD. Prevalence estimates of depression range from 20-90% with most studies reporting figures between 40-50%.” (Rao et al., 1992, p.373) Also according to Rao et al. (1992) depressive symptoms include depressed mood, anxiety and fatigue. The ability to function in activities once seemed trivial brings about this depression. “Patients with PD are frequently unable to engage in their typical work and recreation activities because of physical limitations. Such limitations also increase dependency on relatives and friends.” (Rao et al., 1992, p.375) For a person to lose their independence and have to be assisted in life’s most ordinary actions tends to increase the level of depression. There are instances when the individual will express regret on being a burden to their family out of guilt at not being physically or cognitively able to perform in a manner they expect and assume others feel they should or at least the way they used to. This dependency also weighs on the care giver as the level of responsibility to the other individual impedes on the ability to maintain their normal lifestyle. This can carry with it a level of guilt as well leaving the caregiver questioning whether they have done enough and should I do more. The depression will display itself by emotional outburst of anger, frustration, sadness, worry and guilt. There may be times when the individual with PD considers taking their own life as opposed to struggling with the disease and being an increased burden on family members. “Suicide is often a consequence of severe depression or some form of dementia.” (Feldman, 2008) The care giver will also deal with many of the same feelings due to the fact that whatever is done only prolongs the inevitable and comforts for the moment. The disease will continue on its path of destruction. Without a sense of hope, people often fall into despair. Family members need to understand the reality of the situation at hand and try to develop the proper mindset for the continued progression of the disease and ultimately the death that will be the result of it. This advanced knowledge of what is to come has been titled anticipatory grief. “Anticipatory grief occurs before death, and is experienced by both the dying person and their loved ones. It is very similar to the grief that occurs after the actual death.” (Simon, 2008, p.1280)There are both benefits and struggles that accompany anticipatory grief. The pain that accompanies it is real and the fore knowledge of the suffering of one that you love can and often does increase the level of stress dealt to all those involved. Also there is the ever present situation of dealing with those family and friends, in their innocence and attempt to show caring, asking questions and formulating cause and effect statements. Although their meaning is innocuous it still carries with an additional amount of emotional baggage. Both the individual and the caregiver have to try to keep up the façade that all is well and in control as their world crumbles around them. “There are many positive consequences of the diagnosis disclosure identified by people with dementia and their caregivers, including psychological benefits ( e.g., confirmation of suspicion, sense of relief, opportunity to develop positive coping skills, and the chance to make the most of time).” (Aminzadeh et al., 2008,p.282) Of these positive aspects is the ability to make the most of the time left to relate. Knowing that there are going to be days ahead when the patient is no longer going to be able to relate in a consistent logical way. Knowing that the ability to communicate is going to diminish as they draw deeper into their level of depression and knowing that the physical limitations that will take toll on their being opens up the opportunity to act in such a manner that assures the individual as well as the caregiver a full uninhibited expression of love and attention. “Take the opportunity to say goodbye and voice the unspoken or unexpressed. You might even involve the dying person in planning for the future. This could bring them a sense of comfort and reassurance that you will be okay after they die.” (Simon, 2008, p.1280) The benefit of additional time in advance to make for preparations can be a sense of relief for both individuals. The cost of funerals and expenses related to it can be exorbitant. Having an opportunity to make ready can reduce some of the tension normally associated with this time of life. Individuals in this profession are courteous and will do all within their means to make the preparation as calm and mannered as possible. “Despite all your anticipatory grief experience, your grief after the death is not likely to be lessened.”(Simon, 2008, p.1280) Death is an eventuality for all of us. The knowledge of that does not seem to carry any reduction in the amount of loss one feels. “In order to recover when experiencing a disruptive life event, the person initiates, both consciously and unconsciously, a search for meaning.” (Marcu, 2007, p. 398) There once was an individual in our lives and now they are gone. The most important realization is that they are not coming back. There are several ways to go about coping with this passing: Narrating, Characterization, and Comparisons. One of the main strategies used for meaning making is narrating. (Marcu, 2007, p. 404) Marcu (2007) learned through a series of interviews with individuals dealing with loss that they could make meaning of it more successfully when they could vocalize the event. When describing death as it occurred, the participants gave a detailed account of their thoughts (premonitions, coincidences, regrets, etc), emotions (shock, numbness, pain), and coping (avoidance, denial, wishful thinking, etc). By expressing their situation vocally and not holding it in the caregiver released some of what they had been containing within and were allowed to deal with it in an open forum with someone who expressed concern and condolence, this airing out allows for decompression of all the weight they had been carrying.(p.402) An alternative step to coping is categorized as characterization. This step is similar to narration but differs by focus. Narration is openly speaking about the deceased in general, characterization centers on a mental picture of who the deceased was. By making a portrait from words the grieving person can create a more personal and in depth meaning to the departed’s life. “Highly positive characterizations of the deceased supported meanings like the significance for the self, the dimensions of loss, the unjustness of death or illness, but it also n a cultural belief that one should only speak good things about a dead person. The feelings of loss, pain, despair, and respectful ritual grief were also given weight in the light of the positive characterizations of the deceased.” (Marcu, 2007, p. 405) These positive mental images give relevance to the life of the lost family member. These significant feelings act as a cushion that leads not to despair, but instead the brokenhearted can feel comfort in having been in a close relationship with someone so dear. The final technique recommended by Marcu (2007)is comparison. The sorrowful individual can voice other life instances and occurrences that have similar feelings or emotions. This can happen in one of two ways; 1) rationalizing with what seems to be obvious and 2) relating to life’s own experiences. First we can rationalize our emotions by saying, “they are so much better off now, their suffering is over.” This may mask our feeling of loss by comparing the condition of life for the deceased before and after death. Most of us would rather have our loved ones pass on than have them continue to suffer in a miserable state of discomfort. This acts as a cushion to our selfish feelings of wanting them still with us. As individuals the situation is evaluated as to what is in the best interest for the dearly departed and by doing this it can have an effect of minimizing our grief by allowing us to feel compassion for the lost. The second technique is to compare to our own life experiences. This technique can be broken into two separate sub categories: 1) Using common knowledge to clarify and 2) Knowledge of what we have been through before. First, by focusing on our own life experiences, we can cognitively come up with reasons for the occurrence. For example, he/ she was getting (older, weaker, more ill, etc…) and death is inevitable. Putting things into the perspective that there is nothing more that can be expected may remove some feelings of remorse that the grieving can feel due to wishing they had been more involved in the life of the deceased. This allows for separation of the grieving from emotion and gives them foothold on reality, sometimes these things happen. The second sub category relates to what we have already experienced in life such as the loss of someone else that was very near beloved. This comparison gives the knowledge that the grieving have overcome this before. Also, it allows for revisiting another life that brings fond memories that may have a calming effect on the current remorse that is being felt. A final means of coping is the belief that the separation is only temporary and the loved one, in some form, is still with the grieving and waiting for the opportunity to rejoin the relationship. “These beliefs are, by nature, religious in the sense that they are based on the belief in an afterlife and the continued, independent existence, in some form, of the deceased person: without an afterlife, there would be no continuing person with whom to have a relationship.”(Park, Benore, 2007, p.39) It has been found that “individuals who hold a strong positive self-beliefs exert more control over their thoughts and anxieties than those with less firmly held beliefs.”(Daaleman, Dobbs, 2010, p.226) This statement includes those who are dying and those who are grieving for their loss. It seems the presence of a belief in an afterlife brings a level of comfort and security that is not as prevalent to those who do not have those beliefs. “Although religious activity and behaviors (e.g., Church attendance) are not consistently associated with less death anxiety, the integrity of specific beliefs may play a greater role. (Daaleman et al., 2010, p. 226) It seems by these observations that the strength of the belief system has a direct effect on how intently the individual will grieve over the loss of a loved one. The belief that there is a hereafter and a loving God that has control over the lives of each individual gives comfort. It does so because at these points in the lives of those left behind there is a sense that control has been lost. For those with a spiritual belief, those individuals can be consoled knowing that their lack of control is overridden by a greater One who does have control. It also opens the door to understanding that the existence of the person who passed away had meaning and purpose. They were created, lived and became a part of the lives of those around them as part of a greater plan devised by an Almighty hand with the better interest of His creation in mind. This gives much more credence as to why they were a part of this life and why they were a significant relationship for those who knew them. The comfort derived from this has benefit beyond measure of what the human mind can fashion of its own devices. Those who have no spiritual belief system write off death as inevitability. We are members of a world that was created by random forces and there will be a time when our life will come to an end. This is not to say that these individuals do not suffer loss. It is that they have found a way of coping. This way of coping also relinquishes control of self, but this loss of control goes to the nature of the universe as opposed to a loving Creator God. This method of coping may explain the loss but does not give meaning to the life or death of the individual. Instead this way of coping brings about a more calloused approach. The existence, while it may be important to the individuals closest to the deceased, has no real value above and beyond the moment. When tomorrow comes, life will go on as the universe dictates and all involved are mere participants in the activities. This separates the significance of the individual to the world, as opposed to just those intimately close to them, and minimizes the role they may have played in the lives of others. Each of us has to find our own way to cope with the ordeal that Parkinson’s disease will bring to our lives. There is no true standard for dealing with all of the emotions and harsh realities that are going to accompany it. It is a devastating condition that brings about a significant amount of hardship to the end of life process and eventually the sadness of death. Ultimately, most people are able to emerge from the grieving process and live new lives, independent from the person who has died. They form new relationships, and some even find that coping with death has helped them grow as individuals. They become more self reliant and more appreciative of life. (Feldman, 2008) Hopefully this new appreciation for life will carry over into all relationships. Making the most of the time we have at the present will have long lasting results. Making meaning of life while it is still being lived, when all is said and done, affects making meaning of life when it comes to an end. References Aminzadeh, Faranak, Byszewski, Anna, Molnar, Frank J., Eisner, Marg (2007). Emotional impact of dementia diagnosis: Exploring persons with dementia and caregivers perspectives. Aging and Mental Health, 11(3), 281-290. Armstrong, R. A. (2008). Visual Signs and Symptoms of Parkinson's Disease. Clinical and Experimental Optometry , 129-138. Beevar, Dorothy S. (2003). 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