Interaction between Health Conditions - Multiple Sclerosis - Case Study Example

Section A I am 38 year old female living with my husband and 3 school age children in Bowen, North Queensland. I was diagnosed with Multiple Sclerosis (MS) 5 years ago with symptoms occurring on and off but with a progressive course. As a mother and wife I have to perform various household chores and activities of daily living which have been severely affected by this condition. During some periods I cannot perform most these duties for several weeks or even months where my husband has to forfeit his businesses to help in the activities and some aspects of self care. Our home is a low set with 2 steps and has two levels inside with the bedroom and bathroom on lower level. Section B (part 1) In multiple sclerosis there is destruction of the myelin sheath (the protective material around nerve fibres) by body’s immune cells causing random patches or scars in central nervous system causing impaired function with its attendant limitations in activities of daily living (Fauci RA S et al, 2008). It is a chronic disease that is progressive with episodes of attacks of several weeks to months where visual problems, sensory disturbances, weakness and spasticity occur (Nicki R C et al, 2010). Several types have been described and my condition is remitting-relapsing MS which is characterized by sub acute onset of attacks which occur over several weeks and remit with occurrence after some time. It may also cause altered body functions such as pain, loss of limb functions, urinary problems and over long time cognitive problems (Fauci RA S et al, 2008). Most of the time I feel weak and tired which worsens when I get an attack; I cannot even lift my limbs hence all domestic duties and self care have to be done for me (Brown & Edwards 2008). I remain in bed or seated supported since walking becomes impossible. Sometimes I suddenly develop pain in the eye and cannot see, this threatens my life especially when driving or in the kitchen. In the past my limbs became stiff and painful and as I urinated on myself and had burning sensation on my body during a women’s conference; a really embarrassing and frustrating moment. At times the face is affected with saliva drooling on one side, chewing becomes a problem and feeding becomes a nuisance with my face loosing sensation and my look in the mirror becomes horrible. With the attacks I get hospitalized sometimes, I cannot go to work, I cannot care for my children and my husband becomes overburdened by pressure to cope with this stresses at this times, this too is very tormenting for me and my family. Sexual pleasure has deteriorated and sometimes it is very hard to get stimulated or if I do so it occurs once in a long time (Fauci RA S et al, 2008). Being in this state provides chance for distressing thoughts to engulf me and I once contemplated committing suicide. Since when I get very weak or paralyzed for some time I cannot move from the bed, my husband has to wash me, change my dressing and deal with my toilet needs. MS can be associated with loss of balance, mobility disturbance and poor coordination as well as hand tremors (Nicki R C et al, 2010). He has to turn me in the bed or prop me up in a comfortable chair to avoid pressure ulcers from developing, feed me and almost every other aspect of self care becomes his duty (Nicki R C et al, 2010). My children have to bear with this, preparing them for school, assisting with home work, cooking and meeting their day to day demands is shared between them and their dad. Watching this and realizing you cannot help adds insult to my weakened body. However after a while I regain my functions slowly which provides some but not without the residual weakness that has become long standing. Though my family has been very supportive my friends and employer find it hard to believe my ability to function independently after the attacks resolve. Multiple sclerosis also rarely causes cognitive dysfunction such as memory loss, impaired attention, problem solving difficulties and psychomotor slowing which have luckily not affected me (Fauci RA S et al, 2008). Section B (part 2 MS Queensland- is a local non-profit organization in Queensland involved in MS information, education, treatment, care and other forms of support in Queensland. Multiple sclerosis society of Western Australia-is a non-government, not-for-profit organization that provides support such as information, education, treatment, care and support to tackle MS in Western Australia MS Australia- is the top national body that provides leadership in various aspects of MS such as advocacy, information and communication, collaboration and research and treatment of MS. It incorporates the local organization such as MS Queensland Multiple Sclerosis Network of Care Australia- is a national non-profit, research based body that partners with other MS organizations whose objective is to increase access for people with MS to services that enhance quality life, promote research and serve as a communication platform to all stake holders in MS Multiple Sclerosis Foundation- is a global organization that provides a comprehensive help to people with multiple sclerosis to maintain their health and well-being. Multiple Sclerosis International Federation- is an international organization that has experts and volunteers worldwide whose focus is research, supporting MS organizations, MS advocacy awareness, and providing MS information World Health Organization, WHO- is the global health care organization that partners with all other organization in all issues related to MS from information, funding, research a, providing guidelines regarding diagnosis and management of multiple sclerosis among others. Section B (part 3) WHO MS Atlas, 2008, highlights significant disparities in the provision of basic specific forms of information relating to MS. The above organizations play a key role in providing the relevant, current, and specific information assist the cope with the condition independently. The information also includes the disease itself, diagnosis, management and how to live with it. This is provided written publications and through the Internet sites of most of these organizations allowing convenient ways access and sharing information. Quality of life principles are also part of the help that the organizations help us with. This empowers us to help in self-management of the disease and to help us achieve full life potential. To encourage the highest possible degree of self-management, through the organizations, we can seek quality and evidenced based care in the relevant facilities and also we are able to embrace complementary treatments for this chronic disease. This occurs through information sources above, local community organizations, mutual and peer support groups, (WHO, MS Atlas). Access to health services without limitations by financial ability is also an important benefit from the organizations. We can access evidenced based care from neurologists and MS nurses who providing quality and compassionate care since they are well conversant with our afflictions and requirements, (Multiple Sclerosis Foundation). Personal support is a key part we have received from our local organizations such as access to medications which could otherwise be too expensive for me and my fellow afflicted patients to afford. Through home visits and during our peer group meetings, we get advice how to remain in education, employment, legal issues, activities of daily living and copying with problems like weakness and paralysis, visual disturbances, among other challenges and how family and technical support can be utilized, (WHO, MS Atlas 2008). To ensure those who suffer from MS, their carers and families receive the relevant support and rights and entitlements such as work place, these organizations have been key in advocacy and campaigning to lobby for us translating into better lives through favorable legislations and guidelines to allow resources that enable us to coexist in our society, (Multiple Sclerosis Network of Care Australia). MS impacts on the whole family by causing physical and emotional burden which is proportional to the progress of the disease (WHO MS Atlas 2008). Through information, financial support and peer group support these organizations help our families to cope with daily domestic tasks, self care, psychological wellbeing, intimate issues and financial deficits due to loss of income generating capacities. This has seen us face MS and conquer its impacts in our daily lives (MS Australia, 2013). Section B (part 4) The physical limitations that occur during the relapses have jeopardized my role both as a wife and mother (Compston A et al, 2002). Due to fatigue that is longstanding, I cannot handle strenuous household tasks and during attacks the weakness usually keeps me in bed for weeks and I cannot cook, do household cleanliness and even sort laundry for my husband (Nicki et al, 2010). There appears role reversal and my husband has to take care of these. Our sexual life has been worsening with time; from disinterest to inability to cope up with the activity. I really pity my husband who more often than not appears frustrated since I cannot meet his needs as before. Due to weakness of the limbs, facial weakness, and visual disturbances among others, I need assistance in some aspects of self care. Both my husband and children have to bear with this new task to them and out of their normal daily routine they have to accommodate me. At times extra assistance from a hired assistance is sought to meet the deficits when my husband has to go to work and I cannot handle myself and duties independently. This brings extra financial cost amidst lost income during our absence from work. The cost of hospitalization, investigations and medication is expensive for us since the relapses became more frequent and hence more demanding for us (ABS, 2012, WHO, MS Atlas 2008). As a mother, my school going children require to be prepared for school each morning, require homework assistance and among other guidance on their daily lives. Teaching them to make their beds, how to perform self grooming and tell them bed time stories before they sleep is what they miss when I have an attack and I can only watch them miserably. These periods are hurting to me and for our children it is even worse as they see their mum unable to help and also miss her care (MS Australia 2013). They suffer from emotional and psychological torment due to the limitations that I have at that time(Larner, S 2005). Section C Living a Day Time/activity Ease of activity ( On a grade of 0-4) Barriers or Facilitators Encountered Solution/s to overcome the barriers Approximate financial cost 5:00 AM Wake up and exercise for 30 minutes 1 Limb weakness or paralysis during attacks and spasticity (McCrory et al, 2004) Tizanidine to relieve spasticity and regular physiotherapy (Fauci et al, 2008 ) -funding and support by government (Blue care 2006) 5: 30 AM Bible study 3 Blurred and double vision (American Academy of Opthalmology, 2003) Interferon and Corticosteroid therapy. Use of audio bible. (Filippini G et al, 2003) 6:20AM Prepare the children for school(Wash and groom) 0-during attacks 3-on remission Limb weakness, stiffness, visual disturbance(Nicki R et al, 2010) Husbands help and house help to assist House help upto $250 per month depending on duties (Australian Home Care) 6:40AM Cook breakfast and take breakfast 0-during attacks 3-on remission Clumsy fingers, weakness. Food retained on one side of the mouth -House help during attacks -designed one counter space with all requirements to allow doing all work seated Variable (ABS, 2012) 7:30AM Hug my husband goodbye and drop children at local school 0-during attacks 3-on remission Right Leg and hand of become heavy and tingling and cannot drive Husband help 8:00AM Wash the dishes 0-during attacks 3-on remission Unable to wash dishes due to tremors and inability to stand for long -Clonazepam - get assistance from a house help -seat down as I wash - Dish washer - funding and support by government(Blue care 2006) -$489- 586 8:20 Cleaning and organizing the house 0-during attacks 3-on remission Falls, Weakness and visual problems -House help -Use long handled sponge mops, cleaning brushes, and brooms Long handled cleaning apparatus from $9.99-12 (home care product Australia 2009) 9:00AM Shop for groceries at the local mall 0-during attacks 3-on remission Ambulation impaired by poor balance and weakness House delivery of groceries Use electric scooter (Devitt,Chau & Jutai, 2003) $1,895.00 ( A&J Mobility Solutions 2009) 11:00AM I am taking minutes of our monthly meetings 0 Fingers suddenly cannot write and speech becomes hampered, (Salan, 2003) Delegation 12:30PM Going to toilet 0-during attacks 4-on remission Stools are hard High fiber diet Laxative when worse 1:20PM Weeding in the garden 0-during attacks 2-on remission Fatigue and weakness Help from casual laborers Modanafil treatment - funding and support by government(Blue care 2006) -Variable cost upto $10 per hour (Australian Home Care) 3:00PM Taking a nap 5:00PM Evening tea and relaxing 0-during attacks 4-on remission Feeling of guilt, worthlessness and despair (Feinstein, 2007) Psychotherapy and peer motivation (Feinstein, 2007) - funding and support by government(Blue care 2006) 7:00PM Take supper as we watch the family TV program 0-during attacks 3-on remission Urinary urgency develop and I cannot hold urine for long Oxybutynin treatment and limit evening fluid intake (Fauci et al, 2008) 9:00PM Take the children to bed and tell them bedside stories 0-during attacks 3-on remission Impaired interaction due to speech and mobility problems during attacks (Compston A et al, 2002) Husband help 10:00PM We try to get intimate with my husband 0-during attacks 2-on remission Reduced or no urge, impaired genital sensation and vaginal dryness (Kroll & Klein , 1992) Vaginal lubrication Attend behavior therapy sessions (Kroll & Klein , 1992) Section D (Part 1) For a person with disability due to multiple sclerosis, social restrictions that affect the quality of life exist (World Health Organization & World Bank Group 2011). In the family, it has negatively impacted on our lives despite the attempts to reduce its impact. Ambulatory problems, especially during attacks restrict my participation in daily activities that allows me to interact with the children. Helping in cleaning, grooming, homework and weekend walks or attending their functions at school occurs only when I am feeling better and this denies them a great experience of love and care from (Kelly, 2001). The emotional impact to them cannot be underestimated since the stresses of seeing a mother who cannot attend herself and them is psychologically tasking. The financial strain experienced and extra effort they have to put on their side to cope with these changes affects them immensely at their tender age (Feinstein, 2007). My husband and I have undergone a change in our social life as a result of limitations cased by the disabilities I have. From reduced ability to perform domestic tasks in the house and the garden he has to put more time to generate income to fix this as I usually do most of these tasks. Our sexual life is as good as dead since we hardly get intimate (Kroll & Klein, 1992); our periodic outings are no more since I cannot cope up with social functions. Fatigue, mobility, speech and urinary problems in public social functions embarrass us and I choose to avoid them. Though my husband supports me and encourage my participation, I feel that I am a letdown to him and look for excuses so that I don’t t shame him in public (Larner, 2005). As a lady, social relationships are very important. However, this have become limited during since during meetings I feel discouraged when my urinary symptoms, fatigue, vision and speech interfere with my performance and interactions(Nicki, 2010). My friends encourage me and support my efforts which have been dwindling over time as the attacks have been worsening with time. Self pity and depressive symptoms of worthlessness restrict my participation in the activities. On rare occasions, as it happened during my daughter’s music festival I felt discouraged as some children ridiculed my daughter because I was using a scooter to ambulate. Such episodes are very tormenting but with support by family and close friends I have learnt to handle them (Feinstein, 2007). Section D (part 2) There still exist disadvantages experienced by people with a disability that limits their participation in the society due to several barriers (Williams , 2002). Ambulatory problems is still a challenge to me due to infrastructural barriers at home and public transport which most often is unavailable or difficult for us to use (WHO, MS Atlas ,2008). The cost for mobility assistive devices and medication is still prohibitive though the organizations supporting us sometimes subsidize or purchase for us sometimes (ABS 2011a). There is also a lack of continuity of care at home and respite care to provide ensure adequate follow up and solve any arising challenges (WHO, MS Atlas 2008). According to the WHO 2011, “People are disabled by society, not just by their bodies”. There is a significant discrimination of people who have shortcomings due to disabilities. This is due to limited public awareness of MS, its impact and the lifestyle of MS patients. This results in a significant emotional distress which is higher in people with MS than in the general population (Gulick , 2001). These include increased stress, anxiety, depression and risk of other psychiatric problems with concomitant reduction in level of active involvement in socioeconomic activities The organizations that support us still do not fully give people with disabilities from MS to inform and be actively involved in decision making regarding our concerns which would allow adequate representation of our plight. Also the financial cost of managing MS is high and quite a challenge to a large number of us in Queensland (Queensland Government 2005). Access to medication, supportive and rehabilitative care is sometimes restricted by this since the government support is usually inadequate and I have to use my own means (DK 2001). To solve these challenges a good political will is needed to ensure the legislation on entitlements for people with disabilities is are enforced to enable people with disability to participate fully in the society (WHO, MS Atlas 2008). Some of the legislation that protects the rights of people with MS and other people with disabilities including financial or monetary compensation, rehabilitation and health related benefits, tax benefits. Infrastructure to facilitate our mobility of our mobility related assistive technology is very necessary to reduce the level of dependence on others and improve the quality of our lives (Devitt, Chau & Jutai, 2003). Though a lot of effort has been made to understand MS research on the impact of disability is still minimal and needs allocation of more resources so as to contribute to the overall health of people with disabilities from MS (WHO, MS Atlas 2008). Section D (part 3) For people with disability several factors such as functional limitations to perform daily activities and environmental factors interact to affect their lives (WHO, MS Atlas 2008). Living amongst people who are functionally and physically normal has been a challenge to me. Initially denial of my condition with selective attention to my physical and psychological environment worked to reduce anxiety and depression (Gulick, 2001). This failed as my condition worsened and it was clear to me that I could not effectively perform my life roles. This together with uncertainty of my condition with its attendant medical treatment and rehabilitative interventions caused me a lot of psychosocial stress translating these impacts on my family and friends. The need to cope with the changes of my well-being, body integrity, independence and pressure to fulfill family and social in the challenging environment puts me in a state of grief and despair especially as I painfully get to know that these may be long lasting (Falvo, 1999). According to (Schilder, 1950) the unconscious mental representation or schema of one’s own body defines the body image changes with time and reflects several influencing forces such as sensory (e.g., visual and kinesthetic) and environmental (e.g. physical status).The impact of MS on my functional capabilities and social roles act in concert to alter my body image and self-concept (Bramble & Cukr, 1998). More often than not in social interactions with others, I am viewed as a person with disability making me loose a sense my real self (Falvo, 1999). This causes a negative self perception and lowering my self-esteem (Kelly, 2001). Such stereotyping and prejudices leads to social isolation that drives me into emotional isolation and loneliness (Kelly, 2001) and triggers a deviation from other norms and expectations of the society (e.g. use of health care services, social interactions). These even worsen and make people view me negatively translating to more stigma and discrimination increasing my stress levels and withdrawal from social arenas hampering psychosocial adaptation to my limitations. This also contributes to depression which is common in us living with multiple sclerosis. Intervention from support organization, health facilities and peer groups provide interactive sessions where we actively participate and has significantly help tackle critical issues concerning our daily lives such as how to cope with dependence (WHO, MS Atlas 2008). This has given me positive feelings about life and hence restoring self identity and esteem. Being in a wheelchair most of the time in order to move around and carry out my tasks amidst challenges of visual impairment is no longer a challenge as I have learnt to face them positively and am able to live each day to satisfaction by balancing between my capabilities and limitations (Hughes, Russell, and Paterson, 2005). Though I understand that my situation may get worse with time, I know with my attitude and support from my family I am going accept myself with the limitations I have and not being ashamed those that will arise but simply embrace them as the reality (Watson, 2002), though it is not easy. Legislative measures to end discrimination to people with disabilities by our country will to help the society acknowledge our rights and dignity (United Nations Convention on the Rights of Persons with Disabilities, 2006). Section D (part 4) Health care providers have a responsibility to provide support to individuals with disabilities during rehabilitative process to enable them live normal independent lives or near normal lives (Lutz, & Bowers, 2000). The attitude of health care worker during patient care is important to reduce hindrances from this important process. Most health care workers I have met have a positive attitude and serve me in a dedicated manner (Watson, 2002). We talk about my problems and the need of rehabilitation, benefits and risk, goals of treatment and how to adjust to changes during worse conditions. This makes me take part actively in my health care due to the comfort I have with them (Cardol , De Jong & Ward, 2002). My condition is characterized by periods where I am dependent on others making me feel sorry for myself due to compromised self efficacy. I usually try to sort out my everyday life which proves very hard but the workers help me to cope with this with empathy and understanding. This has boosted my self confidence and I am able to positively embrace the challenges I have and capitalize on my strengths to feel significant in the society (Bramble & Cukr, 1998). There are instructions regarding this form of treatment that I have to abide by in this process to facilitate cooperation for the benefit of both of us (Bramble& Cukr, 1998). I also understand that as a person with disabilities, I have rights that are meant to protect me from the prejudices in the community and freedom to demand respect and be allowed independent decision making (United Nations, 2006). However, this process it is not without problems since a few health workers have in some instances treated me in a way I feel disregarded as am not actively involved in decision making or my decisions not considered (Cardol, De Jong & Ward, 2002), such as missing a scheduled session where I am required to attend all in the name of my benefits. Patients have a right to be informed the nature and the benefits of treatment and consent has to be sought, this most of the time does not happen but rather the health care workers make most decisions without involving us. This is does not translate to the components of person-centered care which requires teamwork among knowledgeable and enthusiastic staff to be able to present the available options to allow patient autonomy and achieve the desired goals (Lutz, & Bowers, 2000). References A&J Mobility Solutions 2009, A&J mobility solution Pty Ltd, Sydney, Australia, viewed 22 November 2009, . 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