The Advanced Stages of Huntingtons Disease - Essay Example

Section A: Background I am a 36 year old man in the advanced stages of Huntingtons Disease.  I am living with my wife and two teenage sons in Emeraldin Central Queensland.  My home is a two-storey structure with three bedrooms, a living room, and a kitchen.  There are bathrooms on both floor levels, including the master bedroom.  The challenges I am facing in my current home include the awkward navigation of steps and impaired general mobility through the house.  Uncoordinated movements and unsteady gait are also some of the symptoms affecting my mobility.  Section B: Disability Awareness The disease can have various effects.  I note that during the earlier stages of my disease that I had mild and uncontrollable muscular movements, stumbling, clumsiness, decreased concentration, decreased short-term memory, depression, and changes in mood (NHS, 2012).  During this time, I often felt confused and could not understand what was happening to me and why.  The diagnosis of my disease later helped me understand what I was going through (NHS, 2012).  As the disease advanced, I found it more difficult to walk, and sometimes had trouble sitting and standing on my own.  I also manifested involuntary movements at times.  I had trouble speaking clearly, and sometimes had difficulties in swallowing (NHS, 2012).  I also lost weight.  I also manifested emotional changes including mood changes, depression, and frustration.  My mood changes also caused a loss of motivation and drive, often causing me to withdraw from normal activities (NHS, 2012).  This disease has caused strain with my family members.  For my family, my disease caused much strain and stress.  Financial burden was one of these issues caused by my disease on my family.  It also made them embarrassed to have a family member suffering from the disease (Knowles, 2006).  My children felt misunderstood and did not socialize well with other children because of the embarrassment they felt.  My children also felt that they were constantly in a stressed household and often had to deal with arguments with my wife and with each other (Knowles, 2006).  My children’s studies were also affected due to the stress they had to deal with.  At times, they also had to deal with abuse, mostly emotional abuse from me (Knowles, 2006).  I would sometimes lash out at them and utter angry and hurting words which caused them much pain and frustration. My family also has a history of this disease, with my father and grandfather having died both in the early 40s due to the ravages of this disease. The fact that they died from the disease also fills me with much dread about my own fate. I also fear for my children who share my genes and who may also suffer the same illness in the future. They also have shared similar concerns about later being diagnosed with the disease, but they are resolved to not let the possible diagnosis limit their activities. Most of the time, my wife is the primary caregiver, along with my children who help in my daily activities. Since I now require care 24 hours a day, we have hired a personal nurse to assist and monitor my health progress. Organizations for Huntington’s Disease include the HD Australia, HD Association UK, HD Association Canada, HD Association of America, etc (Huntington’s Disease Advocacy Center, n.d).  I believe that HD Australia can help me holistically manage my daily activities of living, including day respite services and community nursing.  They have a day respite services in my community during weekends which I can use (Huntington’s Disease Advocacy Center, n.d).  Through this group, I know that I would be able to secure the much needed psychological, spiritual, or social support which I would most need. Section C: Daily living In the morning, I usually get up by first moving my buttocks near the edge of bed, and then using my hands to slowly lift my head. I then slowly swing my legs out of the bed and at the same time turn my torso towards the edge of the bed. Once I land my feet on the floor, I retrieve my walker and then slowly stand up. I then proceed to the bathroom to shower and relieve myself. I dress myself with the assistance of a personal nurse we hired. With the help of the nurse, I carefully navigate the hallways until I reach the steps. The nurse also helps me carefully navigate the steps until I reach the first floor. My wife cooks our food. With help from the nurse, I then brush my teeth. After breakfast, I usually stay in the living room reading the newspaper. My wife has a business which I sometimes visit. My son usually drives me to the shop because I cannot drive safely anymore. I then take a nap in the afternoon and in the evening watch a movie with my wife and children. The nurse usually helps me up the steps. By 10pm, I am asleep. Time/Activity Ease of doing an activity or participating (0-4) 0= no difficulty 4= complete difficulty. Barriers or Facilitators you have encountered Your solution/s to overcome the barriers Approximate financial cost to you 7am: Getting out of bed 3 Unsteady gait 1. Electronic bed (with call button) 2. Ramps and handrails installation/lowering of sinks $ 4,643 (MSEC, 2013) $3130 (World Congress on Huntington’s Disease, 2011) 7.15am: Going to the toilet 3 Limited muscle strength Assistance from caregiver $28,800 (World Congress on Huntington’s Disease, 2011) Section D: Challenges 1. Social restrictions of the disease With my disease, there are various social restrictions I face on a daily basis. I have basically lost my drive and initiative, and most of the time, I stay in bed or spend all day watching television, not bothering to socialize with my family or my friends (Henley, et.al., 2011). My family often sees me as lazy, and I have often been accused of not pulling my weight in the family responsibilities. I am also rigid and inflexible at times. I often like to stick to a specific set of behaviour or activities and sometimes appear like I can apply and adapt to new situations, but in the end, I do not like change (Keenan, et.al., 2007). I want things to basically stay the same and for everyone to follow set rules in the house. I am uncomfortable with changes in the family and in our home. The fact that my children are growing and are having their own interests and schedules does not appeal well with me, and eventually this often causes tension and arguments (Keenan, et.al., 2007). I am also unable to be involved in several things at the same time. In engaging with my children and other household activities, I usually stick to one concern at a time. I cannot seem to switch gears or tasks automatically in my head and as a result, when I am doing something and I am interrupted, I often get angry (Hartelius, et.al., 2010). I am also overwhelmed and stressed out with different things happening at the same time. I tend to be irritable during such times, and often flare up in anger and frustration. Even doing what appears to be simple tasks to other people requires my focus and concentration and when more demands on my attention are made, I usually snap out at my family and friends (Hartelius, et.al., 2010). I have also lost personal interest in my appearance as well as in self-care. However, I sometimes do not notice how I look to other people and as a result, I get constant reminders from my family to wash my face, take a bath, or even comb my hair (Veenhuizen, et.al., 2011). Since I do not understand their demands for me to look better, I usually just ignore these demands. Most of the time, this angers my family. I also feel uninhibited in my actions. I note that I do act rashly and without much thought (Veenhuizen, et.al., 2011). One time, I decided to buy a TV set without my family’s permission. This made them angry as we could not afford a new TV. I am told that I also often utter inappropriate remarks to family and friends, sometimes making sexual advances to my partner in front of other people. I do not however feel embarrassed by these actions. I also feel uncaring and I want things to revolve around me. I am not overly concerned about my words hurting my family or friends and I am also not too concerned about expressing affection to my family (Cox, 2012). I am also told that I can be self-centred at times, especially as I expect my family and friends to attend to my needs with little regard for their needs and concerns. Admittedly, I often get angry when I do not get my own way. 2. Community/environmental challenges Community challenges that I face mostly refer to the stigma relating to the disease. This stigma also seems to extend to my children as well (Wexler, 2010). First of all, I experienced stigma from the medical workers, especially as they automatically perceived me to be mentally incapable to making autonomous decisions about my care. There were times when I was having difficulty moving my muscles and I was wheel-chair bound that they, without asking my permission proceeded to poke and prod me (Hayes, et.al., 2007). I was treated like a mindless and helpless invalid. After I told my employer about my illness, I was asked to resign because they believed that I was no longer capable of carrying out my work efficiently. My neighbours and acquaintances were generally sympathetic after finding out about my disease, however, they soon started avoiding me after (Wexler, 2010). They stopped coming by our house and when I would run into them in our neighbourhood, they often avoided eye contact. I felt like a leper or someone with a communicable disease with the way they were treating me (Hayes, et.al., 2007). These actions often extended to my children, especially with the tone of sympathy which often seemed to indicate that my children would also suffer the illness in the future. As a result of my disease, I was forced to quit my job and rely on my wife’s business for financial support.  She now works her store part-time since my illness worsened. We had to do away with various luxuries since my diagnosis and my children felt the financial pinch as well.  In order to engage community participation, I suggest that information dissemination about the disease needs to be scheduled.  This can be carried out in schools in order to educate the children or in community social sessions as well as workplaces.  Through such information dissemination, the stigma against the disease would be decreased, and the community would be more willing to participate in activities which can accommodate the difficulties relating to my disease (Lemiere, 2004).  Adjustments to the community may involve the widening of side-walks to promote walking, the building of wheelchair ramps at churches, stores, schools, workplaces, and social centres.  Socialization activities can also be scheduled with the members of the community in order to gain their participation in the activities which can also enlighten and assist my coping (Lemiere, 2004).  Through these socialization activities, depression can be prevented and irritability as well as stress can also be reduced.    3.    Reaction to disability from the perspective of self concept, body image and self-esteem. My reaction to my disability in relation to self-concept, body image, and self-esteem mostly refers to a negative image of self.  I hate the way I look in the mirror.  I look unhealthy and unattractive (Chisholm, et.al., 2013).  I also look gaunt and deformed.  I am unable to sit straight on a chair, or even get up without falling down.  To most people who do not know about my Huntington’s Disease, I look retarded.  In terms of self-concept, my reaction is related to the perception that my self-worth is based on my role as a parent (Chisholm, et.al., 2013).  We remain parents to my children, however, such role has been diminished and compromised by my job loss and the fact that I am hardly contributing anything to the well-being of my family.  Although my children and my partner still include me in the decision-making process, there are times when they do not consult me anymore.  As a result, my sense of self and self-worth is very low.  In terms of body image, as was mentioned above, I feel unattractive.  The effect of the disease has caused atrophied muscles and a deformed figure to manifest (Smolina, 2007).  I look weak and unsteady on my feet.  This often causes me to be embarrassed about being seen in public and even by other family and friends.  My body image is also causing me much sadness and depression because I really feel ugly and pathetic.     Due to these negative and unfavourable feelings stemming from my body image and self-concept, my self-esteem is also very low.  Aside from the financial burdens which my disease has brought to my family, I am also a physical and emotional burden to them (Smolina, 2007).  They are obligated to care for me and to help me go through my daily activities.  As such, I feel depressed about my general condition and I feel unworthy of my family and my friend’s help and care (Smolina, 2007).  I also feel that it may be better for me to be put into a nursing care facility in order to relieve my family of the burden of care.  These feelings of unworthiness have caused me to reject my family’s efforts to lighten my mood.  There are times when I get angry at them for no reason because I simply want to drive them away.  Being distant from my family seems to be a more comfortable zone for me because it reduces my feelings of guilt and self-pity (Smolina, 2007).  As long as I feel angry towards them, the more they would stay away and the less I would be subjected to their judgment towards me.  I admit that my feelings of low-esteem come from my body image problem, but more than that, it also stems from the fact that I am unable to perform my normal functions as a member of the family (Smolina, 2007).  4.       Pity, paternalism, self-efficacy, and independence Pity in the rehabilitation setting relates to feelings of sympathy for the patient, mostly believing that they are too sick to help themselves.  For the patient, self-pity can also make the patient very dependent, sometimes unwilling to help themselves (Ponsford, et.al., 2012).  The patient’s willpower has a significant impact on the success of the rehabilitation process.  If they pity themselves, they would not be engaged in their rehabilitation.  And if the healthcare workers would also pity their patients, they would not bother to push their patients towards greater goals (Ponsford, et.al., 2012).  In other words, the health professionals would allow the patients to feel sorry for themselves.  Independence is one of the most important goals and objectives of rehabilitation.  During injuries, patients are often incapacitated.  They lose their mobility, their ability to care for themselves, and the power to make the decisions for themselves (Davis, 2009).  This can be degrading for the patient who would likely feel the loss of control over his life.  Simple matters like bathing and grooming cannot be carried out without assistance.  The goal of rehabilitation is to regain independent functions.  Rehabilitation is however a difficult and challenging process, especially as the physiological functions of the patient are often compromised (Davis, 2009).  Their muscles may be atrophied or compromised making it difficult to mobilize and to care for themselves.  Rehabilitation would often require specific exercises which would help strengthen muscles.  This process can be difficult and painful for patients because of the physical strain that these activities can cause (Davis, 2009).  For patients with a weak willpower and a diminished desire to help themselves, rehabilitation can be a significant challenge.  They would likely give up easily on the process and be dependent for longer than is necessary.  As a result, their muscles would continue to atrophy and weaken and their chances for recovery and for regaining independent functions would remain compromised (Videbeck, 2011).  When patients often give up on themselves and on their recovery, the concept of paternalism may set in. Paternalism refers to the interference in the patient’s life, especially where they are likely to cause harm to themselves or others (Kauffman, et.al., 2007). During these times, their independence of autonomy is disregarded and measures to protect their welfare are carried out by the health professionals. Health workers should not pity their patients, instead, they should look at them as individuals who can still eventually regain normal functions.  There would likely be moments when the health worker has to be tough on the patient, pushing their limits, ignoring their pleas, and not being unsympathetic to their plight (Videbeck, 2011).  In the process, as these patients are slowly able to regain some of their muscle functions, they are able to understand that there may indeed be a way for them to recover from their pitiable condition.  As they progress further into recovery, they are eventually able to regain their independent functions.  With independent functions gradually restored, they are also able to regain their dignity and desire for life (White, et.al., 2010).  They are also able to understand what the health worker is trying to do for them; and they also start to be more cooperative and compliant with their rehabilitative process.      References Chisholm, L., Flavin, K., Paulsen, J., and Ready, R., 2013. Psychological well-being in persons affected by Huntington’s disease: A comparison of at-risk, prodromal, and symptomatic groups. J Health Psychol, 18(3), pp. 408-418. Cox, M., 2012. Quality of life among carers of people with Huntingtons disease. British Journal of Neuroscience Nursing, 8(5), pp. 288 – 294. Davis, C., 2009. Complementary therapies in rehabilitation: Evidence for efficacy in therapy, prevention, and wellness. London: SLACK Incorporated. Hartelius, L., Jonsson, M., Rickeberg, A., and Laakso, K., 2010. Communication and Huntingtons disease: qualitative interviews and focus groups with persons with Huntingtons disease, family members, and carers. International Journal of Language & Communication Disorders, 45(3), pp. 381–393. Hayes, C., Stevenson, R., and Coltheart, M., 2007. Disgust and Huntington’s disease. Neuropsychologia 45, pp. 1135–1151. Henley, S., Novak, M., Frost, C., King, J., et.al., 2012. Emotion recognition in Huntington’s disease: A systematic review. Neuroscience and Biobehavioral Reviews 36, pp. 237–253. Huntington’s Disease Advocacy Center, 2013. Huntingtons Disease Societies & Associations [online]. Available at: http://www.hdac.org/links/ [Accessed 13 April 2013]. Kauffman, T., Barr, J., Moran, M., 2007. Geriatric rehabilitation manual. London: Elsevier Health Sciences. Keenan, K., Miedzybrodzka, Z., Teijlingen, E., McKee, L., et.al., 2007. Social and behavioural research in clinical genetics. Clin Genet, 71, pp. 120–129. Knowles, J., 2006. Huntingtons Disease. London: The Rosen Publishing Group. Lemiere, J., 2004. Huntingtons disease: Early detection and progression of cognitive changes in patients and asymptomatic mutation carriers. Belgium: Leuven University Press. MSEC, 2013. Fully electric adult bed [online]. Available at: http://home-health-care.medical-supplies-equipment-company.com/product/fully-electric-adult-bed_23625.html [Accessed 13 April 2013]. NHS, 2012. Huntingtons disease – Symptoms [online]. Available at: http://www.nhs.uk/Conditions/Huntingtons-disease/Pages/Symptoms.aspx [Accessed 08 April 2013]. Ponsford, J., Sloan, S., and Snow, P., 2012. Traumatic brain injury: rehabilitation for everyday adaptive living. London: Psychology Press. Smolina, E., 2007. Psychosocial impact of Huntingtons disease on families and spouses from the perspective of the Family Systems Theory. Studies by Undergraduate Researchers at Guelph, 1(1). Sulaiman, S., 2007. Learning to live with Huntington’s disease: One familys story. London: Jessica Kingsley Publishers. Veenhuizen, R., Kootstra, B., Vink, W., Posthumus, J., et.al., 2011. Coordinated multidisciplinary care for ambulatory Huntingtons disease patients. Evaluation of 18 months of implementation. Orphanet Journal of Rare Diseases, 6, p. 77 Videbeck, S., 2011. Psychiatric-mental health nursing. London: Lippincott Williams & Wilkins. Wexler, A., 2010. Stigma, history, and Huntingtons disease. The Lancet, 376(9734), pp. 18 - 19, White, L., Duncan, G., and Baumle, W., 2010. Foundations of adult health nursing. London: Cengage Learning. World Congress on Huntington’s Disease, 2011. Burden of Huntingtons disease in the USA [online]. Available at: http://www.creativ-ceutical.com/presentation.pdf/WCHD_2011_Dorey_HD_burden_USA_31Aug2011_FINAL.pdf [Accessed 13 April 2013]. Read More