Rehabilitation Huntington's Disease - Case Study Example

Name: Tutor: Title: Rehabilitation Course: Date: Rehabilitation Section A: Statement of case study three: Huntington’s disease I am a 41 year old male living in Emerald in Central Queensland. I am affected by huntington’s disease which is a neurodegenerative disorder. I live with my wife at an apartment where I have to use approximately thirty stairs to access our house. It also has two stairs inside it for accessing the bathroom. Section B: Disability awareness Effects of the disease on my body can be divided into three: motor, cognitive and psychiatric effects. They have progressed over the years. Motor effects caused spontaneous movements and hindered movements’ that I would do voluntary. Hindering of voluntary movements has contributed more to this disability. I have experienced difficulties in swallowing, falls, inaudible speech and body balancing problems. This has led to me being unable to care for myself. My body has lost the speed required to perform difficult tasks and has also been unable to coordinate between different tasks flexibly. This I would refer to as loss in cognitive functions. Many times I have felt depressed, nervous, short-tempered and spontaneous. I find simple calculations that I used to do virtually impossible to calculate. I feel withdrawn socially as I cannot interact in the same way I used to interact with people. I have been unable to drive due to inability to move my limbs, something I enjoyed doing. At the moment, I require assistance in almost everything I want to do (Rosenblatt et.al 2009). Effects of disability on family The disability has had effects on my immediate and extended family in many ways. I see that they find it frustrating it because it does not have an exact means of treatment. Many are the time when the symptoms of my disorder change. This forces my wife to always ensure she gives me proper and cautious attention. It takes a lot of her time which she would have used in doing other important duties. She has to rely on other family members for support. The family members go out of their ways and means to find a means to support us deal with the disorder. Emotionally, I see that it negatively impacts on my wife’s emotions and those of some members of the extended family. At times she is sad at my condition but seems happy to have me. Family members alternate in assisting my wife to help me in performing daily activities. Economically, the family has to rely on well wishers, neighbours and family members who have better incomes so as to fund the means to manage the disorder such as drugs (Rosenblatt et.al 2009). Organizations that can provide information and support I have identified several organizations that can provide information and support about my disorder through the help of my wife. The huntington’s disease association is one such. Through its website: hda.org.uk my wife has learnt valuable lessons about my disorder which she shares with me to help me cope. Also, the CHDI foundation is another organization that helps the understanding of my disorder. It also helps in fastening therapy development for my disorder. It has offices in Newyork and Los Angeles and is also available via the website chdi foundation.org. The international Huntington association is another organization that is available through the email iha@huntington-assoc-com. The worldwide federation of neurology research group on Huntington disease is also available through email r.a.croos.neurology@lumc.nl. The, we move foundation that provides worldwide education and awareness for movement disorders is available through the address: box 1052, Newyork and telephone number 1-212.2418567. The Huntington project aims at providing funding for projects dealing with ways to deal with huntington’s disease. It is available through the website www.huntingtonproject.org. Organizations in my area I live in Australia in the state of Queensland at an area called Emerald. In my state there is an association by the name huntington’s queensland. This association is an established centre that provides support to individuals affected by the disorder and also to their families. It has a website, www.qahda.com that helps create awareness of the disorder, the experiences of individuals affected by it and offers information on huntington’s. Ablecare is another organisation that makes available programmes that help better the abilities of individuals with disorders. There is also access arts Queensland that provides the arts and cultures preferred by people with disorders like Huntington. Access recreation Inc has recreational facilities suited for people with disorders like mine. Acrod Queensland provides workforce that assists people with disorders like mine while also articulating policies that are of helpto people with disabilities. The Australian Huntington disease association (QLD) Inc avails support that is professional for people affected by huntington’s. It offers counselling services, education on the disorder, family support to family members and day service program to cater for individuals with the disorder. Section C Every day, I take it as a day to continue fighting, being positive and doing the best I can to live (Madeya 2006). Time/Activity Ease of doing an activity(0-4) 0= no difficulty 4= complete difficulty Barriers or Facilitators I have encountered Your solution to overcome the Barriers 7:00 a.m: Wake up 3 Unable to move my limbs. My wife helps me out of bed. The wheel chair is raised to bed level 7:30 a.m: Taken to the washroom that has a toilet and bathroom. 2 Toilet has a seat on eat. Bathroom has a bathtub My wife helps clean me up. Dresses me up too. 8:15a.m: Head for breakfast 2 Unable to take solid food. The food is mashed up. 9:00 a.m: Read novel or book 1 Turning of pages Use of a tablet 11;00 a.m: Outdoor visit to friends 0 No difficulty My brother takes me there 1:00p.m: At home, watch news as I take lunch. 3:00p.m: Watch T.V programmes 1 1 Sitting position. Has to be turned. Changing stations Signal for someone to help turn me. Signal for change. 7:00 p.m.: watch news 8:00 p.m.: Have supper and medication. 9:00 p.m. : Sleep 0 1 2 Changing stations Unable to take solid food. Getting to bed Signal for change. Mashed up food. My wife helps me take medicine. My wife helps me to bed. Section D: Social restrictions Regarding my social life, it is kind of tough. This is because there are so many things that I did in the past but since been affected by this disorder, it has put to hold many of them. The disorder has affected my ability to perform different functions such as mental, body, emotional, personality, energy and sleep functions. This limitation to perform these functions has negatively affected my social life (Cimarolli et.al 2011). Mental function limitations have retarded my ability to communicate. I am normally rarely audible or clear when I do talk. This has restricted me to use signs when trying to communicate with my friends or family members. This way they can understand me. Also, I cannot involve myself in planning my family’s budget with my wife. It’s something that I used to enjoy doing with her. However, due to my restricted ability to calculate, I leave it all to her and only nod in agreement. My body functions have also been derailed hence restricting my social life. Muscle movement has been virtually impossible. The ability to walk and visit friends, go to the golf park, take my wife out has been restricted. These are social activities which I normally took without hindrance, but at the moment I cannot undertake them. The emotional functions like expressing joy or anger has been derailed (Cimarolli et.al 2011). I cannot truly interact with friends or family members through expression of these emotions. Such is the restriction that I am restricted to in such a manner that I can only speak to myself emotionally without a means to use them to interact socially. My social life has also been restricted through a not so social personality. It has been affected by tempers even to the slightest of jokes. This hinders my interaction with persons around me. My energy levels have also reduced over the years with the advancement of my disorder. This curtails my ability to perform house chores that would help me interact with family members. This is part of my social life that is restricted. I can no longer move about because I am unable to move my limbs. If I am to move, then it is with the help of my wheelchair which I cannot do without. This restriction in movement, coupled with low energy levels due to swallowing problems has severely affected my social life. My ability to participate in leisure and recreational activities with people is limited. This involves use of communication gadgets to talk to friends which I cannot use. Regarding, relationships with friends, colleagues’ neighbours and community members, it is restricted in a manner that we can only communicate or interact when I want due to mental derailment. All this factors have limited my social life (Finger et.al 2011). Community or environmental challenges faced In regard to the environment various factors have posed a challenge. For example in the working environment, there have been barriers and facilitators. Barriers pose the challenge in such an environment. In the earlier days of my disorder, I had to adapt to my ever changing body to fit myself in the working environment. Also, measures had to be put in place to accommodate me. Due to my inability to move my limbs, I had to acquire a wheelchair. This forced the workplace management to put up lumps for my use. The work schedule also had to be changed for my sake because I could not be at work that early in the morning. The area around my work station also had to be cleared so as to accommodate my wheelchair and give me space for movement. Also the relationship within my working environment which includes the relationship with my fellow workers was also affected. The way we related with them before my condition changed in such a manner that they seemed to care more about me than before. My home also had to be altered so as to provide an environment that was best suited for me. The stairs in the house were removed and lumps put up too. The seats were replaced to a size that I could easily access from my wheelchair without problems (Finger et.al 2011). Objects that could easily hurt me by falling on me had to be removed and put in the store. The house environment was changed so much that many time it confused me because I was used to the former setting. The family members also prevented me from interacting with the house pets as they feared they would harm me. They also prevented me from doing a lot of things within the house environment again to guard against injuries. The amount of work that I could participate in, be it in the house or working environment dwindled over time because I became too slow to perform a certain function. My response to changes in the environment became too slow or no response at all which affected my health a lot. Responses to things such as sound were reduced to slowly nodding the head as it was the only body part that I could move without struggling a lot. Response to weather changes was with the help of my wife. Thus, my wife had to help me put on warm clothing so as to keep warm. In the community, I used to participate in community work such as clean up exercises, visiting the needy around the community and participating in community social projects. However, since my condition developed, I have not been able to be part of these community projects or exercises (Finger et.al 2011). Reaction to the disability In regard to self concept, that is how I figure myself out or see myself as. It has really changed a lot. I see myself more as a person who relies more on the people around me since my condition advanced. I cannot care after myself, like washing myself, dressing or looking after my health. All these have to be done by family members or my wife. It makes me look like a child to them. Though I try to show them that I can try and do some things, it does not work. I see like I have become a fool over time because my ability to do simple calculations or write simple words has really become impossible. I now consider myself as a person who has nothing more to do in this world apart from hurting the feelings of people and causing inconveniences to those around me (Friend et.al 2011). This view of me has negatively affected my self esteem. It has created periods of crisis in my life. The confidence to participate in doing house work, assisting others around me I do not have. I see it’s like if I try to participate, then I have their attention that is really like a bother to them, both emotionally and in terms of their time. I no longer value myself as a person worth living or being part of the society I live in. I see myself as useless as I cannot even move my limbs, change my sitting position without the help of my family members or even move myself around. This low self esteem has caused me to at time feel like it’s not me. To accept myself as I am has been really hard as a result of the low self esteem. I cannot stand up for the sake of my family nor defend them as the man of the house. Instead it is them who have to do it for me. I ask myself why this has to be so (Larner 2005). As a result of a low self esteem, I view my body as a useless body. I view it as a body that cannot help in any way but only be helped by all means. Since it cannot move itself without help, since it cannot cloth itself, feed itself and do all the things that I would normally do in the past. I view it as a useless body that has made me a less important person in life. I have had weight problems since my disorder advanced. This has made me hate my body because I cannot exercise to control my weight gain. It is a body I view with much contempt that if I had the opportunity to get out of, then I would. Concepts of pity, paternalism, self efficacy and independence in relation to rehabilitation Rehabilitation in my sense of view is the process through which I am able to adapt to my disorder through the help of health care professional or family members by taking me through steps aimed at helping me cope with the effects of the disorder. It is something that I have undergone both at home and through community based organizations that are concerned with individuals who are affected by conditions like mine. It has helped me advance the activities that I can participate in, in a day. My personal view of myself has really improved a lot through rehabilitation. I have undertaken both community and home based rehabilitation. This has helped me a lot in earning to associate with people through interacting with health professionals in the community, family and friends at home (Hale 2004). The know how provided by health professionals, the teamwork, their reassurance that I am as good as anyone else, their support during the rehabilitation process was of great value in accepting my situation and learning how to live with it (Griffiths, Austin & Luker 2004). It helped me take away the pity I had about myself and instilled confidence in me that I still have people who I care about and who care about me. However, a time came in which I really needed to go home. In spite of the care from the health professionals, I felt I needed to be at home (Hernandez 2006). Thus my rehabilitation had to be taken along with me to a home based one. I realised the advantage with it was with the financial aspect. That it made me in a sense, feel independent of myself as the savings I had would be used economically at home to provide the necessary materials needed to help in my rehabilitation. It helped my wife to set the targets for my rehabilitation within the home environment. It was very much easier and accessible to undertake at home allowing for my wife to invite other professionals who I valued very much. It also aids me a lot in fitting back into the community as I am (Cott 2004). I had the chance to be taken around and say high to neighbours, even to visit friends. However, signs of paternalism were evident amongst neighbours and some friends. Some of them express disregard for me and act in an unfriendly manner. However, the friendly ones helped my self efficacy as I would set targets of visiting a number of friends which I would do before the end of the day (Siegert & Taylor 2004). Rehabilitation at home also gave me a chance to feel independent as I would try and do things at home like reading a novel without supervision. However isolation from professionals who could deal with arising complications was quite a worry. Thus rehabilitation improved my self esteem, self efficacy and made me feel more independent (Hale 2004). 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