Multiple Sclerosis as an Autoimmune Disease - Case Study Example

Case Study: Multiple Sclerosis Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Name Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Course Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Lecturer Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Date xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Executive summary There are various disabilities as a result of different diseases. Multiple sclerosis is an autoimmune disease that affects the central nervous system of a human body. It has led to various disabilities in the body which has also affected normal functioning of the body. This include: slurred speech, blurred vision and imbalances. The report gives a case study of a female aged 33 years who is married and has 2 school children. Various challenges including environment and social restrictions that she is going through have been highlighted. Still it has elaborated the different challenges the family and friends are facing as a result of her disability. Contents Contents 3 1.0 STATEMENT OF THE CASE STUDY 4 2.0 DISABILITY AWARENESS 4 2.1 Effects of the disability 4 2.2 Effects of the experience of disability on my immediate and extended family unit 5 4.0 CHALLENGES 8 4.1 Social restrictions 8 4.2 Environmental challenges 9 4.3 Self concept, body image and self-esteem in relation to disability 11 4.4 Concepts of pity, paternalism, self efficacy and independence in relation to rehabilitation and health care 12 5.0 CONCLUSION 13 REFERENCES 14 1.0 STATEMENT OF THE CASE STUDY I am a 33 year old female living in Bowen in North Queensland with my husband and two age children. I live in a house which is low with 5 steps. Being a 2 level-house, my bathroom and bedroom are on the upper level. I face various challenges especially when the disease has relapsed. Climbing up the stairs to access the bathroom has been one of the challenges. This is so, especially when am confined in a wheelchair. However, while using a cane, it does not prove too difficult to climb the stairs. In addition, during the afternoon fatigue, getting into my bed has been a great challenge as there is need for me to have regular nap in the afternoon. This allows me to do some chores in the morning before I get fatigued later in the day. This situations call for assistance in order to access the basics. My neighbor has been of great help in my movements as my husband is never allowed in the afternoon as he works mostly at these hours. Still, my children are always in school. Nevertheless, my husband and I, have decided to employ a nanny to assist me because not always is my neighbor around. In addition, we are still working on having my bedroom and bathroom relocated to the first level or even moving out to a comfortable house to minimize the cost plus the energy and discomfort that I face in this house. Still, I will be able to do different chores as it will be easy to access the basics facilities in the bedroom and bathroom.. 2.0 DISABILITY AWARENESS 2.1 Effects of the disability Living with the disease may be viewed as living with daily pains and symptoms. It has been something that is hard to accept as it has various effects on my body which of course has also affected my everyday functioning especially during relapse. Some pains and symptoms come and go while some are always with me. In some cases, I experience mild sensory symptoms; warmth, burning, tingling and itching. These symptoms come periodically. Profound fatigue especially in the afternoon and frequent urination are also frequent symptoms. Fatigue may last for months or one year or may form a relapsing pattern. As a result of fatigue, my body has failed to perform the normal households’ chores. Frequent urination has been as a result of impaired bladder control which is sometimes accompanied by impaired bowel control. This has resulted to overall discomfort. Disability has also led to loss of vision especially on the left eye. Sometimes I get double vision mainly in the afternoon. In worse situations, I get confined in a wheelchair especially in cases where numbness or tingling of the limbs occurs or when I get paralyzed. In rare cases do I use cane in walking during worse situations. However, cane is suitable during imbalance. Multiple sclerosis has led to slurred speech. Communication, therefore, has been hard especially with my children who are very young to understand my state. However, my husband has been of great help in assisting me in communicating with them. Not only has the disability affected me physically, but also emotionally. Coping with this disease has resulted to stress as most of the time of the tome I get frustrated especially when am unable to perform some chores and spend time with my family on vacation. Helping my family in accepting the disability, to some extent has resulted to depression. 2.2 Effects of the experience of disability on my immediate and extended family unit Different reactions are expected from the family members when one is diagnosed with multiple sclerosis. The feelings range from fear, frustration, disappointment and anger. These reactions may have adverse effects on the patient. Therefore, there is need for the whole family to take initiative to ensure that the patient is well taken care of as much as they may find it to be a huge responsibility. This will help the patient to respond well to medication and eliminate frustration. It was hard for the family to accept my situation at first. My husband was the most affected. However, despite this, my husband has been of great help. He has been able to raise the required finance needed as multiple sclerosis costs a lot. The disability has made me be in and out of job regularly. My immediate family has also been of great help financially. Initially, it was a devastating event for my immediate family and friends too. This unpredictable course has created difficulties for planning necessary support and psychological adjustment. It has been hard to talk with my children about the disease as they are very young to understand. However, they are trying to cope with the situation am in as they are able to give the necessary moral and emotional support. My family has decided to come together to meet the challenges that am facing, though it is emotionally exhausting especially for those are the main caregivers. Each family member is expected to approach this challenge in his or her own coping style; communication which is effective is needed to enhance the family’s aptitude to work together in handling the challenges of this disease. 2.3 International, National and local support group There are various international, national and local organizations that are known to provide support and information that is important for the multiple sclerosis patients. International organizations include: Mellen Center for multiple Sclerosis Treatment and Research It offers specialized care and support programme for the patients. The organization provides information online and has support online via website and their tool number is also provided. MS Trust A British organization that provides information about MS that is constructive and positive, educating health professional and providing research that is relevant and practical to the people living with multiple sclerosis. MS Society of Queensland A local organization, MS Society of Queensland is set to offer services in Queensland to all people with Multiple Sclerosis together with families. Services provided include community nursing, counseling, attendant care, social and spiritual support. 3.0 DAILY LIVING 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 6.am: Getting out of bed 3 No rail use Using an electric bed $200 6.15 am: Going to the toilet 3 Difficulty in standing Personal assistance 7.00 am: Exercising and showering 3 Difficulty in making some move Professional assistance $50 8.00 am: Doing dishes 2 Minimal movement wheelchair $ 200 9.30 am: House cleaning 2 Minimal movement Wheelchair $ 200 12.00: Preparing lunch 1 Difficulty in standing Use of cane or wheelchair where appropriate $100 2.00pm : Resting 2 No rail to use Electronic bed $ 200 4.00pm: Getting children from school 2 Poor vision on the road sometimes Use spectacles $50 5.00pm: Prepare supper 2 Minimal movement Use of a cane or wheelchair where possible $ 100 6.00pm : Help children with homework 2 Poor vision Use spectacles $50 7.00pm : Do supper 1 Minimal movement Use wheelchair or cane where appropriate $ 100 9.00 pm : Retire to bed 2 No rail to use Electronic bed $ 200 4.0 CHALLENGES 4.1 Social restrictions Social restrictions are one of the challenges faced as a result of this disability. These include maintaining relationship among friends and family. For example, in the families new loyalties and alliances may emerge. This may be as a result of the basic care that I need. Some members of the families may feel excluded while others closely drawn in. Family leisure and lifestyle activities have been altered. This may result to lack of attention to other members of the families leading to division. Still, financial strains due to treatment costs have lead to social disruption as there is no enough money to take of the leisure activities. Some friends and people have reacted negatively towards my disability. They have done this through disparaging looks and remarks, avoidance. Social burden have resulted from dealing with people whose behaviors and attitude are judgmental, rejecting and stigmatizing. These behaviors have been characteristics of some relatives and friends. Some people, especially the impatient one have tried to rush the disabilities in life. For example, a man tried to unload my cart in the supermarket. However, the gesture would have showed kindness but it was too obvious that I was too slow for him in the queue. Social gatherings and family leisure activities to some extent have been restricted. This occurs in times when the family needs to take avocation and due to my state, they are not able to enjoy themselves in outdoor activities. These may have resulted to various relationships interruption. Communication, has been greatly affected by the disability and as a result, social interactions have been greatly been affected too (Morris 2005). Slurred speech has played a role in the downfall in the normal work interaction. It has been hard to relate with other employees especially during a relapse. This has created great a gap between my colleagues and me. It has also restricted my social life as it has proved hard to socialize and make new friends. Lack of interaction has been as a result of fear of being stigmatized. Maintaining good relationship with my colleagues has been challenging considering the fact that some not always do I report for work, for example during a relapse. At the workplace, it has proven difficult to relate with well because initially they labeled me as a lazy person. This was evidence if the work was shared among the employees. Most employees, therefore, avoided working together with me as they always thought that it would lead to work delay. In addition, my children have been affected it has been hard for them to come with their friends to visit. However, my husband has tried to talk to them and created awareness that the disease is not contagious as most people would conclude and avoid me. 4.2 Environmental challenges According to the International Classification of Functioning, Disability and Health (ICF), environmental factors do interact with people with disability. There is a complex relationship between the health condition of a person and the environment or community which a person lives. As a result of this relation different environment, therefore, has different impact on individuals having disability (Morris 2005). Environment factors are grouped in two levels: individual that describes the immediate environment of a person and the material features that people come face to face, societal, which involves the community and different government roles. There are various environment challenges that I have been facing as a result of my state. Many are the times that one uses a wheelchair as one is moving from one place to another, or a cane. However, in most buildings, stairs are used. This has been a major challenge and it restricts access to some places. Of importance, is that most building, however have adapted passages that are friendly to the people with disability. Therefore, it has become easier to access large buildings with minimal assistance. In some cases, most places lack communication device that assist in communication. Slurred speech may not be understood by many people and in most situations has resulted to misinterpretation of information. Augmentative communication device may be applied as they are speedy and assist in effective communication. Still, an interpreter may be used where necessary. Toilets that are available in most public places are not friendly to the people with disability. In actual fact, I have to carry portable one in case of need arises. The toilets should be made available in a way that the people with disability are able to use them with minimal attention. Basically, construction and building of path routing that are meant for private use are necessary, as they will assist people in finding their way outside and inside the building and locate their way in Braille, size of corridors, for example. Signposts are also necessary to alert people especially in parking areas. This will assist people in differentiating specific parking places for the people with disability. The community should also take initiative in meeting the environmental challenges. The group that has been assisting us in counseling and exercising has continued to engage the community in recreational activities which include physical fitness, sports, visiting museum galleries and museums, playing instruments and engaging in hobbies, for example. Initially, this was a challenge to me as it was impossible for me to take part in these activities on my own. Of importance, is the relationship that is being established with the people with the community who will eventually understand my disability and also assist where need arises. 4.3 Self concept, body image and self-esteem in relation to disability Self or body image may be defined as the conception an individual has on oneself. This includes the self assessment of personal worth and qualities. Body image and self-esteem are both derived from the perceptions of different people. Body image does also involve emotions, imagination and the physical sensations of our bodies (NDA 2001). It is mainly influenced by environment, self esteem physiological and physical experience. Therefore, self esteem and body image in case of disability, does play a major role in our life, especially a disable individual. Depending on the extent of the visibility of this disability, most persons are subjected to shunning, whispering and staring which adversely affect self-esteem and body image (Turner 2001). A disabled person always receive tiny put down if physical differences are mocked by other people. The tiny hurts may be accompanied by language of abuse and may lead to low self-esteem. Self esteem mainly describes how we do view ourselves, which may be either positively or negatively. It is a great challenge for an individual with disability to view or consider him or herself as a normal being. In addition, dealing with stereotypes and discrimination from society may affect self esteem. In most cases, my self esteem goes down when able-bodied individual speak to us. Voice tones and conversation levels may sometimes be offensive lowering my self-esteem and of course affecting my self -concept. As the importance of body image is gender differentiated, greater expectations and demands are placed on the females, in most cases I find myself trying to adapt various cosmetic attraction, in order to hide my disability. In most cases I believe that using the cosmetic perception would improve my body image as a woman. At times, disability is not always visible. However, the treatment that I undergo may cause some swelling, gain of weight or spots on my skin. In situations where I need to use seeing aids, I may sacrifice my seeing aids in order to appear normal. However, despite all the effects of disability on my self esteem and body image, there is need for me to minimize the negatives and maximize on the positives, focus more on the my abilities and less on the limitation and develop on my abilities, avoid comparisons, especially the unrealistic ones, avoid over-generalizing, for example, some work I cannot do as a result of my disability, I should not generalize that I’m an overall failure. Of importance, is appreciating myself and my disability too. Self appreciation will not only help me but also assist my family a great deal in accepting my disability and helping me too. 4.4 Concepts of pity, paternalism, self efficacy and independence in relation to rehabilitation and health care Individuals with disabilities are normal people who only happen to have some difficulty with the basic life activities, for example talking, learning, breathing, seeing, hearing, moving or walking. Of importance to understand, is that not all conditions, diseases or illness may rise to that level to become a disability as stated by the law. Various barriers are faced by the people who disabled some which are hardest to remove, are erroneous image and stereotypical thinking of individual with disabilities which results to fear, pity, disdain or paternalism. Individual with disabilities are wrongly seen as confine, sick, helpless, limited in capacity and intelligence, victims or needy. As much as people with disabilities seem helpless, it does not necessary imply that they need help. This is in relation to rehabilitation and professional support. Most of them do try to live an independent life and may ask for assistance when need arises. The health professional should not insist in helping unless one asks for aid. In actual fact, it improves self esteem of an individual with disability (Longoria & Marini 2006). If assistance is requested one should minimize drawing attention to the individual with disability as this may embarrass the person. Most people have viewed people with disability as desperate figure who are basically in need of pity, caretaking and charity. In most cases, for example in schools, one of the prevailing attitudes to the individual with disabilities is one of pity. This has profound effect to the person with disability especially is he or she is confined in a rehabilitation centre or a health professional clinic. If stigmatization is experienced by people with disability, it will result to both external and internal consequences. Basically, it will affect an individual’s quality of life, psychological and social well-being. It will also result to anxiety, stress and of course further stigma. Self efficacy and self esteem may also be lowered. During rehabilitation or help from the health professionals, people with disability may observe stigmatization which may lead to self pity, rejection, reduced acceptance, withdrawal and discrimination. All these may result not only in pretence and denial as a mean of self protection but also may lead to reduced as they may not ask for assistance or help may not be offered or sought (Shapiro 2000). It is therefore, important that people with disability are given support and treated as normal people in order to avoid poor self esteem as a result of self esteem and efficacy. The rehabilitations and health professionals should treat people with disability with due respect and allow them to be independent. 5.0 CONCLUSION Various disabilities have affected a large population in the country. This has led to formations of different organization that support people with disability. Suffering from multiple sclerosis has been a great challenge, not only to me but also to my friends and immediate family. In most cases, an individual gives up if the needed help is not provided. Lack of self esteem amd self concept has also been a great challenge to me. It has led to taking all possible actions in ensuring that my body image is good. Environment and community challenges have greatly affected me. However, the measures that are being laid by different stakeholders are making our lives easier as we are able to access the basics. Social restrictions have also been major challenges. Despite all these challenges, moral and material is essential to all people who are suffering from disabilities as they are normal people who need to be treated s human and not despised. This will greatly help them to overcome everyday challenges the face with their disabilities. REFERENCES Longoria, L., Marini, I. 2006. Perceptions of children’s attitudes towards Peers with a severe physical disability Journal of Rehabilitation Morris, J. 2005. Citizenship and disabled People DRC, UK NDA, 2001. A Matter of Rights: Strategic Plan 2001-2003, Dublin: NDA Shapiro, A., 2000. Everybody Belongs, UK: Routledg , J. Shapiro Turner, S. 2001. Disability and the Sociology of the Body, CA: Sage Publications. Read More