Multiple Sclerosis - Symptoms and Treatment - Case Study Example

Multiple Sclerosis Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Name Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Course Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Instructor Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Date Statement of Case Study My name is Amelia Williams. I am aged 33 years old, married and with two school going children. They are aged 6 and 8 and their father is 40 years old. I live in the surbabs Bowen, the northern parts of Queensland. My family lives with me; my husband goes to work on a daily basis, leaving in the morning and reporting back in the late evening hours. He drops the kids to school on his way to work every morning. In the evening, the kids are dropped by their school driver in their school van. I stay in the house most of the times. And the reason for this is because I am a patient of multiple sclerosis. My home lies on a low plane. My house is one storey, my bedroom and the bathrooms both being on the upper floor. I love it. It is cosy and comfortable and has always been comfortable. Only until I was diagnosed with multiple sclerosis and my life changed completely. I am now to leave this home to a new home for some temporary period of time. However, the challenges that await me there are what I am yet to discover. Right now, my mind can only picture them. SECTION B The effects of the condition on my body and bodily functions have been far much wanting. Multiple Sclerosis is one of the most common diseases that affect the central nervous system. The doctors have told me that its cause id still unknown but that the area around my nerve systems known as the myelin sheath, is what has been affected. Myelin is the organ responsible for the transmitting nerve impulses through the nerve fibres. The last report from the hospital indicated that the damage that has occurred to my myelin sheath is very heavy and thus the transmission of the nerve impulses in my body is very slow (Anne 2008). Additionally, the nerve fibres themselves have been damaged. From the implication of the name, “multiple” implies that several tissues have been attacked and “sclerosis” is a suggestion that there are several scars on the tissues. My body is what has been affected to the greatest extent. In more than enough situations, I have had symptoms such as extreme fatigue, body weakness, impaired sensation, lack of coordination, tingling in the skin muscle and severe mood swings (Anne 2008). I also experience bladder problems and impairment in my cognitive senses. The symptoms have come at separate times on different occasions. It is not such a fatal disease, because if it were, then I guess I wouldn’t be writing this right now. At least I have the assurance that I can still walk in the next 15-20 years, although disability in the end is inevitable. I will not be able to avoid it. However, when I was first diagnosed with multiple sclerosis, my mind jumped to the worst case scenario, the wheelchair. But now I am assured that this cannot happen in any less than 10 years to come. The major impact I have had to suffer now is recurring relapses. Fatigue as a symptom is always experienced daily. This, I must say has had the most impact on my immediate and extended family. It is least understood. During my primary stages of diagnosis I had a lot of problems with my co-workers and my boss. They could easily label it as laziness no matter how much I tried to explain. Fatigue, being the only real symptom of multiple sclerosis is as a result of severe damage to the nervous system. Sometimes my friends and family would be astonished by my behaviour because to them it seems mysterious. Other times I have had to explain to them how I feel. My husband has to do some of the house chores and at times and this is embarrassing to me. More than often, he has complained of being overworked by the duties. My young children at times also fail to understand why I cannot be there for them. It is saddening and heartbreaking. However, my consolation is one. Multiple sclerosis is not a contagious disease. Since several genes play a major role in creating the risks of contracting a disease, the risk of transmission to my children is very rare and very unlikely to happen. Moreover, it is not water bone. Neither is it air bone. I am totally convinced that my condition is not genetic since there is no past evidence of it in my family lineage. Even though, some family backgrounds have a very high susceptibility to multiple sclerosis. What I know is that an immediate family member, such as a child or a sibling has got very low chances of developing the disease ranging from only 3% to 5%. My husband and my children are my biggest caregiver and very integral to my health and my well being. This might have had a negative effect on his health. I have noticed that it has deteriorated in the past few months. My children, though in good shape health wise, might also be affected, if not physically, then psychologically. Lately, my husband has also complained of security concerns regarding the family finances because of the direct and the indirect expenses that have accrued from the care giving. I can choose to get help from one international organisation known as the MS Society of Canada. The organisation has supported research in the major areas of concern regarding multiple sclerosis. Mainly, it has focused on discovering the major causes of the disease and the prevention methods that can be used to avoid it. It has also undertaken research that can help identify the methods that can be used to find ways that can help to repair the myelin that has been damaged. It has progressed in scientific research in areas that are pertinent to the disease (Rehabil J. 2008). Additionally, the MS Society of Canada may benefit me with its care giving programs. It has voluntary caregivers who under their care I can get full medical, physical and emotional support. They are trained to impart information on the patients on how they can manage the disease. In their local support groups, they visit the patients, prepare their meals, do their cleaning and help in providing for transport facilities. More importantly, they accompany the sick people to their medical appointments hence offering emotional support. I have been told also that they can manage my financial matters and provide me with specialized medical care. There is also a community organisation in my local area that can help me in my day to day living. This is the Multiple Sclerosis Society of Queensland which is a charitable organisation helping people who are victims of the disease. The organisation support both online such as face book website and also manual support; they have day respite services such as the sporting wheelies which help the people to engage in sport and exercise. I can benefit from the physiotherapy and the counselling sessions that they offer daily (MS Society of Queensland). SECTION C Managing a whole day has not been easy for me. It gets worse from day to day. My daily routine starts from the time I wake up. I have to wake up at 7 o’clock daily. My story is not ordinary. I can still walk but sometimes I experience immense fatigue that leaves me paralysed. This explains why my husband has a lot to deal with. I have also had to make some adjustments in my daily chores so that the ones that I choose are not so physically demanding and that I may get the rest I need. I go shopping on rare occasions and I no longer drive. I do not always want to push myself to the point of exhaustion. I always plan for easier and light jobs and I have trained myself to take breaks in times that I feel my energy has been drained. I am also considering a different type of employment, maybe some work that can generate income from home such as painting. This is actually more productive and less exhausting. Table Time/Activity Ease of Doing the Activity or Participating Barriers and facilitators I have encountered Ways I will overcome the Barriers The Approximate Financial Cost 7am: I wake up and get out of bed 2 Absence of a rail in the bed Provision of a rail or supportive structures 5 dollars of his morning allowances 7.15am: Going to the Toilets 4 In times of immense fatigueness. Physical assistance from my husband “ 7.25am: Showering and Cleaning up 3 Unable to stand in time of immense fatigueness Personal assistance from husband or a volunteer from the organisation 10 dollars a day 9.00am: Washing Utensils 3 Unable to stand up An electronic washing machine or personal assistance could help 3 dollars for the electricity bill 10.00am:Washing Clothes and hanging 4 Unable to stoop or adequately operate the washing machine Personal assistance or use of electronic washing machine 5 dollars a day 12.00 noon: Preparing my lunch 3 Unable to stand for long hours. Especially when it is a hot afternoon Personal assistance 5 dollars a day 12.30pm: Unhanging laundry and Pressing 4 Dizziness and fatigue Use of personal assistance 10 dollars a day 3.00pm: Going to the Nearby Stalls for Grocery Shopping 4 Unable to drive well. Fatigue in hot afternoons Being driven to the malls or use of a volunteer 5 dollars a day 4.00pm: In my Study for some Reading 2 Difficult to use the stairs sometimes Use of a wheelchair or a lift could help 50 dollars for the purchase of the wheelchair 5.00pm: Preparing tea and Snacks for the Children 3 Unable to stand due to dizziness and fatigue Physical assistance 5 dollars 6.00pm: Bathing the Children 4 Unable to stand due to dizziness and fatigue Physical assistance 5 dollars 8.00pm Preparing Supper and Serving 4 Unable to stand. Mood swings and stress Personal assistance from my husband, the kids or a volunteer 5 dollars in case of a volunteer 9.00pm: Lay the Children to Bed and Retire to Bed Difficulty in getting them in their upstairs bedroom and also my bedroom My husband’s assistance 50 dollars to purchase the wheelchair SECTION D 1. The International Classification of Functioning, Disability and Health (ICF) have been used to describe the various social restrictions that patients with multiple sclerosis have had to face. The disability has touched several aspects of my social life especially in a negative way. I can say that it has affected me directly or indirectly through my experiences with friends, family, colleagues at work and even members of the community at large. Generally, there are negative attitudes from the society and stereotypes which are a major disabling factor for the affected. Some of the social restrictions that I have had to face include: Constrained relationships between me and my family members; as I mentioned earlier, there has been complete change of roles in the family. My husband has to wake up earlier than me, prepare the kids for school, prepare the breakfast on the days when I am completely helpless and also set the house clean for the day. Normally, there is lack of traditional support structures. For instance no family member, either immediate or extended is willing to act as a carer. For my case, my children are too young to take care of their ailing mother, while my husband feels overburdened. I have no close relative around who is willing to help. It is getting harder for me to maintain a friendly relationship with my family and friends. Multiple sclerosis has had profound impacts on my social roles within my family, at my work place and also in my relationships with my friends and my relatives. This also affects my wellbeing at large. The severe disability expected in the end will of course have the worst impact: loss of my job and a permanent stay in the wheelchair. My progressive cognitive impairment is an absolute indicator of my loss of employment. My standards of living and that for my family will of course have to decline. The possibility of withdrawal from any social activity is another outcome. Moreover, I will be forced to cut out from all forms of useful leisure activities that I have been enjoying. There is also a strong indication of stress among the relatives accruing from the burden of care. 2. There are also several community and environmental challenges I have encountered. ICF indicates that these are socio-cultural factors, the services available to me and the physical architectural space. These restrictions result from the fact that I am unable to interact successfully with my environment. Barriers to participation in community life; This is majorly brought about by the numerous cases of false presumptions in the society that the patients of multiple sclerosis are fully impaired and disabled to serve any constructive purpose in the society. These barriers have been classified to be either, cultural, structural, linguistic or historical. My case here does not apply to either linguistic or cultural, it is purely structural. My employment has been threatened. This is because the nature of my disability to a large extent denies me access to my workplace. Easily waking up, making up and getting to my workplace is no longer a reality to me, just like it is to many other people in Bowen leaving with the same conditions as mine. Even so, the greatest outcome here is unemployment because in the end no boss would want to pay money to an employee who does not even report to work. In fact I am considering adjusting and making several changes in life that will help me adapt to the hostile environment. Lately, I have not maintained a very good relationship at my workplace with my employer and other fellow colleagues as well. The core reason for this is my condition of fatigueness. Just like at home, it is easily confused for with laziness and fear of tasks. Employers need to understand that this is not the case. This can be done by creating awareness of the impact that the fatigue can have on a patient of multiple sclerosis (Groetzinger 1986). There are also some environmental changes that could lead to full community participation. For instance the provision of occupational therapy may help people like me to simplify some work tasks. Since fatigue is sometimes aggravated by hot environments, provision of cool environments to me at the work place and even at home may have positive impacts. Provision of wheelchairs will actually help. More so, strategies like employing people with disabilities who have skills and expertise will also help in the workforce population, which is a good strategy towards encouraging community participation of people with multiple sclerosis. Relevant legislation, if enacted and upheld will help in the environmental adjustment by the people with disabilities. I know that there is a law that protects me from any kind discrimination and this is quite encouraging. For example the Queensland Anti-Discrimination Act of 1991, bars any person from discriminating against any such person with disabilities either direct or indirect. 3. I may react to my disability in a negative way. I may hate myself, blame myself and at times blame fate and destiny. But I have been advised that the best way to deal with the concepts of self-image, my self esteem as well as my body concept to see beyond my disability. There are many negative attitudes and moral stereotypes in society that will actually fight to disable me more and bar me from fully participating in work and community life. But the best I can do to myself is to work on overcoming the barrier of misconception and the prejudice I face and work solely towards aspiring to be a useful asset in the society. In dealing with my body image and self conception, I may be required to deal with some issues like examining short term and long term broad consequences of my disease and then come up with ways to deal with them positively. I may also be required to raise awareness on the mental health issues as well as the physical ones on my family members, my friends and the colleagues at work so that they do not later impact on my self esteem by criticizing and demeaning me on the basis of my disabilities. Another probable and recommendable strategy is to maybe share some personal information about myself, in my counselling sessions for instance. Just the fact that I suffer from multiple sclerosis does not mean that I do not have dreams that I aspire to attain. It good that I also share some of these dreams, ambitions and aspirations with the teams that are sent from the MS Society as well as the local organisation of the area. This will help a great deal in helping me cope with the situattion while still maintaining and improving on my self-esteem. To boost my body image, I should not also let my dreams to be affected by the disease. I should also adopt a strategy that will help me deal with instances of denials, maybe in the family, in the community or at the workplace. High levels of anxiety, denials, depression grief and aggression maybe against the staff at the work place needs to be put in cheque. Failure to comply with the therapist will also affect my motivational spirit. I should work hard to maintain it. The only way that will help me maintain myself concept, as I have been advised is to cultivate the ability to accept my changed body image, which will boost my self esteem high and also improve my levels of competence in any work that I undertake. Without a sense of meaning, and a purpose to live for, the effects of multiple sclerosis can be an unbearable burden. 4. The professionals treating people with the disability are mostly volunteers of the charitable organisations that are engaged in such work. The ones from the Multiple Sclerosis society of Canada, for instance, are mostly referred to as the caregivers. Normally, they are most often the spouses of the patient, due to their closeness and their availability. At times there could arise issues of pity and paternalism when in the course of carrying out their work. There is an aspect in societal view of the sick that they are meant to be pitied. This is because they are mostly seen as not being able to determine their own needs and meet their desires. Therefore, they are assumed not to be able to achieve the same status as their counter parts who are not physically disabled. Such an attitude is in contrast with the code of ethics of professionals which dictates that the social workers should embrace the concept of empowerment, i.e. imparting in the patients with multiple sclerosis information on how they can empower themselves. Paternalism is also an issue here. It arises from what the experts believe is political oppression of people with disabilities. This disables the favourable environment in which the patients would have worked in productively. The paternalistic and sentimental charities towards the people with disabilities also reflect the aspects of pity and sympathy. Such factors also contribute a lot in impeding the emergence of some citizens, although with physical disabilities, would have been a very powerful group of the political elite. The self-efficacy and the independence displayed by the health professionals towards their patients if of great importance. According to the World Health Organisation definition, the social workers must encompass capabilities such as self esteem, self efficacy and confidence, autonomy, which equals independence and ability (Groetzinger 1986). These factors are what contribute to the positive empowerment of the people with disability. Generally, an empowered individual is supposed to display certain qualities. These are the ability to be in control of their own life as well as the personal health of the individual these aspects are very important in contributing to ones quality of life including the ability to decide, act, and also gaining the ability to influence the political grounds either through communication or even through physical manipulation. One of the major core responsibilities in professional responsibility of social workers when dealing with patients with disability is the duty to promote the self empowerment of the patients. This will help all the patients who seek professional help from them to gain overall control of their health and individual lives, something which is far from trite. Significantly, empowering such people with disabilities to gain full mastery over their lives requires a very deep-rooted sense of freedom as well as autonomy, thus self-efficacy and independence. Work cited Ann Charlotte E. Assessment of Social Workers’ Attitudes towards People with Physical Disabilities, University of Tennessee, Knoxville. Available from http://trace.tennessee.edu/cgi/viewcontent.cgi?article=1646&context=utk_gradthes Groetzinger, D (1986). MS, Multiple Sclerosis: Its Effects on you and those you Love 2008 Multiple Sclerosis Society of Canada Toronto, Available from http://mssociety.ca/en/pdf/ms-effects.pdf Rehabil J. Use of International Classification of Functioning, Disability and Health (ICF) to describe patient-reported disability in multiple sclerosis and identification of relevant environmental factors.2007 Available from http:/ /www.ncbi.nlm.nih.gov/pubmed/17225040 The Cost of Caring: Implications for Family Caregivers, 2008 Available from http://mssociety.ca/en/pdf/socact_caregiver-pospaper-feb08-EN.pdf (1995). Multiple Sclerosis. [Houndmills, Basingstoke, Hampshire, UK], Stockton Press. Read More