A Disease Which Affects the Brain and the Spinal Cord - Case Study Example

Concepts of disability Paper name: Name: Institution: Section A: Case study Multiple Sclerosis (5 years post diagnosis) I am a female aged 38 years, and I am suffering from Multiple Sclerosis, which was diagnosed five years ago. I live in Bowen in North Queensland with my three children who go to school, together with my husband and my mother who helps to take care of me. My home has two levels, and it is low set with 6 steps. The sitting room and the kitchen are on the lower level, while the bathroom and my bedroom are on the upper level. Moving from the bedroom to the sitting room poses a problem since there are steps and I usually experience difficulty in moving and muscle weakness. Sometimes I experience visual problems, and these problems require me to use assistance from other people and my walking stick when going up or down the steps. My children go to school and my husband go to work, therefore, I always need a carer to assist me to move from the upper level when going to the kitchen, and from the sitting room in the lower level to the bathroom, which I visit frequently or the bedroom in the upper level. I always need constant care and assistance from the people around me, in case I get a relapse or experience problems when moving. Section B: Disability Awareness Multiple sclerosis is a disease which affects the brain and the spinal cord (MacLehose and Bowen, 2009). This nervous system disease affects the myelin sheath that protects the nerve cells, hence blocking any messages between the brain and the other parts of the body, and this causes the symptoms of multiple sclerosis. This condition leads to the deterioration of nerves, and this process cannot be reversed (Hassan-Smith & Douglas, 2011). The symptoms of multiple sclerosis (MS) are not universal to every person, and they greatly vary, depending on how much the nerves have been damaged. Having multiple sclerosis comes in with visual, sensory and motor problems (MacLehose and Bowen, 2009). The MS disability leads to losing of sensation or increased sensation like tingling and numbness, weaknesses of the muscles which leads to a difficulty in moving, coordination as well as balance. There is also a problem with the speech whereby, a person suffering from multiple sclerosis experience difficulties when talking, or may be unable to talk at all. There is also acute pain, unstable mood, feeling tired as well as visual problem like seeing double vision (Hassan-Smith & Douglas, 2011). Having difficulties in walking as well as the double vision will make it very hard for me to move from the bedroom to the sitting room without any support like being supported by a person on holding on the rails. Again, the double vision will make dependency more pronounced as I can skip or miss a step while going up or down the levels. Being tired most of the time means that I cannot do my work on my own, but will require the assistance from other people, for instance cooking, washing, using the bathroom, or even walking. This is a major challenge since the stations for these chores are in different levels of the house, my children are young and go to school, while my husband go to work (MacLehose and Bowen, 2009). My condition has a very big impact on my family, since they always see it as their responsibility to take care of me, as I have become so dependent on them. The most affected of all is my husband, who has to take care of me, provide for my family, and act as both a father and in most cases, a mother, to my children who are still young and need assistance as well. My mother who is elderly takes care of me most of the time when my husband is at work. The MS disability affects my family as well in that, my children have to depend on my mother and my husband for help, unlike their school mates who get their food prepared by their mothers (Department of Health, 2005). My inability to talk sometimes makes them feel like they do not have a normal life since they cannot relate their experiences about their mother with their peers. My family members are aware of my condition, but whenever I have a relapse, they always get the fear that I might be dying this time round, which is very traumatising for them (MacLehose and Bowen, 2009). There are various organisations that can provide information and support about Multiple Sclerosis, which range from local, state, national and even international organisations (Stachowiak, 2007). Organisation Email and Website Telephone number Services provided Multiple Sclerosis of Canada info@mssociety.ca www.mssociety.ca 1-800-268-7582 Support and self- help groups Information and referral. Recreation and social programs. Conferences, education programs and workshops. Financial assistance. Supportive counselling. Advocating for yourself. National multiple Sclerosis Society (New York, USA) www.nationalmssociety.org 1-866-675-4787 Raise awareness of MS nationwide. Help to connect with other people with MS. Helps people to understand the latest research. Multiple Sclerosis of Australia info@msaustralia.or.au www.msaustralia.org.au +61 2 8484 1315 Supportive counselling. Recreation and social programs. Conferences, education programs Provides awareness of MS to people. Multiple Sclerosis Association of America (New Jersey) webmaster@msassociation.org www.msaassociation.org 856-488-4500 800-532-7667 Connects a person with MS resources in their area. Fundraising. Organise support and educational events. There are organisations in Queensland which help me to manage my daily activities of living. There is the Multiple Sclerosis society of Queensland where I usually go for regular check- ups and constant counselling to help me manage my condition. There is also the Bowen State Primary, which is near my home, where my children go to school. The proximity of the school helps in that my children can walk to and from school, instead of me having to pick them up. Section C: Daily living Time/Activity Barriers or Facilitators encountered Solution/s to overcome the barriers Approximate financial cost 7.30am: Getting out of bed No support to help stand Railing on the bed would help. Placing the support gadgets like clutches or a walking stick near the bed. $ 0.00 7.45am: Going to the toilet Unable to stand Required personal assistance A catheter would also help. $ 0.00   8.00am: Taking breakfast  Lack of coordination and weakening of arm muscles   Requires personal assistance  $ 0.00 10.30am: Moving to the sitting room Unable to go down the steps to the lower level Requires railing on the steps Need personal assistance $0.00 1.00pm: Eating lunch Cannot prepare lunch Assistance needed to prepare lunch and feeding $0.00 5.00pm: Taking a shower Unable to stand Lack coordination of arms Need personal assistance $0.00 9.00pm: Preparing for bed Unable to change clothes  Requires personal assistance  $0.00 Section D: Challenges Functioning and disability I face various social restrictions as a result of my disability (Multiple Sclerosis), every day while undertaking my activities. MS leads to difficulty in speaking as well as in walking. It can also lead to mood changes and sometimes depression (Compston & Coles, 2008). These factors really affect my relationship with my family members as well as the members of the society. This is because, relationships often adapt according to the experience a person has ever gone through with MS (Kearney & Pryor, 2004). In this case, sometimes I become moody, and this is reflected on my outlook, and my husband and mother, who takes care of me may feel like I am not happy with how they care for me. My inability to speak clearly also affects my relationship with my children, especially the youngest, who is four years old. The children fail to communicate with me, and this makes me depressed, which in turn, is interpreted by the children as rejection from me (Hassan-Smith & Douglas, 2011). Family members tend to live the life of the Ms Person instead of theirs, and if they feel that the MS person is not happy, or maybe a relapse occurs, they tend to be overwhelmed with guilt, thinking that it is their fault that the relapse occurs. This in turn causes a strain in the family unit as the condition is being managed (Groetzinger, 2012). Children on the other hand always carry out more responsibilities as compared to their peers who have their mothers on their side to help them out with these responsibilities (Kearney & Pryor, 2004). This is because, due to poor coordination and weakening of muscles, taking care of myself is almost impossible leave alone taking care of my children, whom I cannot be able to communicate with sometimes. During social gatherings like going to church or other functions, it becomes hard to interact with people and friends. Some people avoid talking to me so as not to be embarrassed by being forced to say something polite or just because; they pity me and do not want to find me in my worst moods (Compston & Coles, 2008). I do not like being pitied, and so I avoid being around people who pity me, because of how I walk or even talk. This greatly affects my relationship with my friends as well as the members of the society since most do not know about my disability, hence cannot understand me. Sometimes, when faced with a difficult situation or when required to make a difficult decision regarding my disability, my family and friends are brought together in a common course, and this greatly strengthens their relationship among themselves as well as with me. This is because they usually revisit the circumstances surrounding my disability; hence they understand me better (Groetzinger, 2012). Contextual factors I have faced various environmental challenges as well as in the community, as a result of Multiple Sclerosis disability. My house has two levels, an upper one and a lower one. The bedroom and the bathroom are in the upper level while the kitchen and the sitting room are in the lower level. Going to the bathroom or to the bedroom in the upper level requires me to climb 6 steps, which I cannot do on my own because of my difficulty in walking and sometimes standing. I cannot use my wheel chair; therefore, I always seek assistance from my mother or my husband to support me. This in turn forces me to be confined in the bedroom with my small television set instead of being with the rest in the sitting room. Another reason is because I use the toilet frequently, and getting someone to take me to the toilet and then back to the sitting room is hectic and tiring. Going to the church too poses a problem since I have to be accompanied, in order to be assisted up the steps outside the church door. I am also required to sit on my wheelchair which sets me aside from the rest of the congregation. This subjects me to the stares and pity of believers, some who do not know or even understand the disability that I have. Bowen in Queensland, where I live is full of tourist attractions and 8 beaches surrounding it like Queens beach, Kings beach, Rose Bay and Greys Bay. In order to accept my condition, frequent information and counselling from the Multiple Sclerosis society of Queensland, I frequently visit the beaches to marvel at the beauty of nature. This puts in more hope and reduces chances of depression since I can look at the beautiful beaches and happy people. The Multiple Sclerosis Society of Queensland helps people with MS in the area to meet and associate with others. Through this association, we have organised picnics on the beaches where we have a chance of meeting with our family members or carers and have fun while sharing experiences. This helps us greatly to accept our condition and appreciate our loved ones. I would like the community to embrace the people with disabilities and be considerate while designing the infrastructure. For instance, having wheelchair tramps in all the public places to enable the comfort ability and easy movement of the people with disabilities. Railings should also be provided in places with stairs or steps, for easy movement of people with disabilities, and for support too, to avoid accidents (MacLehose and Bowen, 2009). Self-concept means how an individual thinks and evaluates themselves. This is the same as being aware of oneself during a given period of time. Having realised that my condition is permanent and I have to depend on people to take care of me, it is always hard to accept such situations and even understand what I should do at times. At times I find myself in denial and rejecting my current situation. Disability is a hard state for one to be in but acceptance helps in rehabilitation. There is that part of me that does not realise who I am any and what I am supposed to do with myself. The reason behind this is that life changed at once and it is very hard to adjust to different kind of to the one was used to. This is changing from being independent to dependant with other people in so many ways. Body image refers to the feelings that an individual have about their body structure and how attractive they are to other people (McLeod, 2008). I no longer like my current body and I do not admire myself in any way. This means it is always hard to describe myself using personal traits such looks. Due to staying idle with so little to do in the recent past I have gained a lot of weight which have made me feel that I am so fat as compared to me in the past years. I find nothing funny and am always gloomy and yet the time I was independent I was very humorous I find people are no longer attracted to me as they were used in the past when I could do everything for myself. The fact of waiting for someone else to make all my decisions is so depressing. Self-esteem this refers to the degree at which as individual accept or approve themselves without waiting for other peoples’ opinion on how they look or how they behave (McLeod, 2008). In this case I am finding it very hard to accept myself as a person with disability because this is a life changing occurrence.it all comes with adjusting although it is so drastic for one to just accept (Baker & Gringat, 2009). Being dependant make me think that other people see me as a burden to them because they have to help me in so many ways including financial help. This has really affected my self-esteem to becoming a low one. My confidence has really faded away because I find it hard to direct a person to do anything for me because I am now placed under their care and it is as if they are doing a favour in helping me out. This problem does not only affect me but the majority of the people with disability. Paternalism is the concept that refers to a state where an individual or a group of people acts in manner that limits some people of the liberty and autonomy to do what they are willing to do. This behaviour is seen to be against the other parties will and this case the will of the people with disability is not respected. The people giving treatment to the people disability tend to treat disability as individual problem which is full of inadequacies (Baker & Gringat, 2009). The professionals do not respect the peoples with disability opinion and they always decide for them what they think is the right thing. The healthcare practitioners at times are rude to these patients because they tend to treat them in a charitable manner and do not treat them as citizens’ but rather as patients. The care given to people with disability depends with the institution as it would be appropriate if taken to be a society issue. Self-efficacy refers to the extent at which an individual believe in their own ability to perform given tasks or even to reach the given target or set goals. There are health care professional who go to an extent of setting their goals so as to ensure that the patients are fully recovered (Argyle, 2008). There are also professionals who do not believe that these disabilities can be healed or even maintained and, therefore, they tend to discourage the patients. They believe that disability is an individual problem this affects the patients rehabilitation because they do not encourage them (Kralik & Van Loon, 2011). There are those professional who are always ready to face the challenges every day and this is driven by the strong ability for them to solve such challenges (McLeod, 2008). These strong willed professionals positively influence people with disability during offering treatment. The levels of self-efficacy differ from one healthcare professional to another. Independence as related to healthcare professional refers to degree at which they can apply their own judgement without seeking any clarification from their seniors or even their colleagues (Williams & Kralik, 2011). The healthcare professionals should understand that people with disability depend on others to give them care. Therefore, should be aware of all the procedures to treat people with disability in the best way possible. They should also have a positive attitude towards the patients because this is a human rights issue and encouraging them will help them recover (Power, & Dell Orto, 2004). Healthcare professional should be independent from their seniors and their colleagues so as to ensure that they can handle patients when on their own. Independence of health care professional is very important if people with disability are to get rehabilitated so as to ensure any health care professional can offer help to the patients whom they feel are close to them and feel comfortable with them. References Argyle, M. (2008). Social encounters: contribution to social interactions. Aldine Transaction. Baker, L. & Gringat, E. (2009). ‘Body image and self-esteem in older adulthood’. Ageing and society, 29(6): 977-95. Compston, A. & Coles, A. (2008). ‘Multiple sclerosis’. Lancet, 372 (9648):1502–1517. Department of Health (2005). The national service framework for long- term conditions. London: Department of health. Groetzinger, D. (2012). Multiple Sclerosis: its effects on you and those you love. Canada: Greenwood Tamad Inc. Hassan-Smith, G. & Douglas, M. (2011). ‘Management and prognosis of multiple sclerosis.’ British journal of hospital medicine, 72(11):174–6. Kearney, P. & Pryor, J. (2004). 'The international classification of functioning, disability and health (ICF) and nursing'. Journal of Advanced Nursing, 46(2):162-170. Kralik, D. & Van Loon, A. (eds). (2011). Community nursing in Australia. Carlton Australia: Blackwell Publishing. Lassmann, H. (2005). ‘Multiple sclerosis pathology: evolution of pathogenetic concepts. Brain Pathology, 15(3):217–22. MacLehose, A. &Bowen, C. (2009). ‘Advanced Multiple Sclerosis (MS) and family relationship processes.’ Multiple Sclerosis trust, 13(3): 6-7. McLeod, S. (2008). Self-concept- Simply Psychology,accessed on December 2, 2013 at http://www.simplypsychology.org/self-concept.html Power, P. & Dell Orto, A. (2004). Families living with chronic illness and disability: interventions, challenges, and opportunities. New York: Springer Publishing. Stachowiak, J. (2007). Top 10 Organisations for Multiple Sclerosis support. Multiple Sclerosis. Accessed on December 2, 2013, at http://ms.about.com/od/resources/tp/ms_resources.htm Williams, A, & Kralik, D. (2011). 'Working across a continuum of healthcare', in D Kralik & A van Loon (eds.). Community nursing in Australia, 2nd ed. Milton, Qld: John Wiley and Sons Australia. Read More