Living With Motor Neurone Disease: A First Person Account

About Motor Neurone Disease (MND)

Discuss about the Report On Motor Neurone Disease.

I am a 37-year-old female living in Capella in Central Western Queensland. I had been diagnosed with motor neurone disease three years ago. I live with my three kids and my husband. We live in a two storey house and my bedroom is on the top floor. I used to find it extremely difficult to climb up the stairs, after being diagnosed with the condition. In order to facilitate my living, my husband made several changes in the layout of the house. Owing to the fact that my life expectancy is not more than 5 years, my husband and kids take all possible efforts to make me feel comfortable. The disease has left me paralysed below my neck. My family members tried every means of helping me gain comfort while in bed. A mattress elevator has been installed to raise me from lying to the sitting position. We have also hired a paid house help to assist me with the basic chores such as, showering, feeding, combing and dressing.

I have been diagnosed with Amyotrophic lateral sclerosis (ALS), better known as motor neurone disease (MND), three years ago. This condition is an umbrella term that refers to a specific disease, which leads to death of several neurons that control activity of the voluntary muscles. The major effects of motor neurone disease are manifested in the form of atrophy, muscle weakness and muscle spasms (Salameh, Brown Jr & Berry, 2015). I felt a weakening of my muscles throughout the body that occurred due to degeneration of the lower and upper motor neurons. This also resulted in significant negative impacts, as a result of which I lost the ability to control or initiate my voluntary movements. After being diagnosed with the condition, for the first few months the effects were observed in the form of my inability to walk for long distances, or climb up steps. However, as it progresses, my physical condition worsened and I failed to perform even the daily activities, such as, preparing meals for my kids, or dressing them. Gradually, my condition deteriorated and I became paralysed, below the neck. The fact that I have a life expectancy of not more than 5 years added to our distress Behavioural or cognitive dysfunction are other direct effects of motor neurone disease. More than half of the people suffering from this condition often experience mild variations in their behaviour and cognition (Brown & Al-Chalabi,2017). I also experienced these effects, with the most common ones being gestures, repeating phrases and apathy. Furthermore, I also find it difficult to sleep. Commonly reported cognitive effects in ALS include executive dysfunction, and language dysfunction (Renton, Chiò & Traynor, 2014). A year after being diagnosed with the disease, I began experiencing troubles with my verbal memory and social cognition. The initial symptoms of ALS are so subtle that the symptoms often go unnoticed or unlooked.

Effects of Motor Neurone Disease

I encountered a similar thing and failed to report muscle weakness or the problems faced during breathing or swallowing. This resulted in a delay in diagnosis. My first symptoms were also related to an awkwardness faced while strolling at the park with my kids, or running after them. I often used to stumble or trip over. Gradually, began to face difficulties while buttoning the shirt of my kids or writing with them. Further effects of the motor neurone disease are experienced in the form of slurred speech that is nasal in character (Robberecht & Philips, 2013). My recent symptoms encompass diminished vital capacity, and quadriplegia. The latter has resulted in partial or complete loss of all four limbs.

My husband and kids are always involved in providing me care. They often say that although this experience has brought them closer, they are unable to cope up with the fact that  I have a short life expectancy. This sudden disclosure about my health statusnhas brought about tension in our relationships and resulted in their break down. Most family members who act as carer for patients suffering from motor neurone disease often feel guilty or sad about the worsened health condition of the patients (Turner et al., 2013). Although my husband and kids want to provide as much of the physical and personal care as they can, they often feel exhausted, due to the demanding nature of my physical condition. My disease has also created considerable effects on my extended family such as, my cousin and their family members. They often show sympathy and a compassionate attitude towards me. However, some of the family members have also began to consider me as a burden and have tried all possible means to cut all ties.

Organisations
International	National	State	Local
The ALS Association 1275 K Street NW - Suite 250 - Washington, DC 20005 phone: 202-407-8580	MND Australia PO Box 430 North Sydney NSW 2059, Australia. T (MND Australia): +61 2 8287 4980 T (MND research): +61 2 8287 4989 Mobile/Cell Phone: 0408 461 932 Email:[email protected]	MND Queensland PO Box 470, Inala 4077 35 Wedgetail Street, Inala, 4077 Phone: 07 3372 9004 Free call: 1800 777 175 Fax: 07 3278 9871 Email: [email protected] www.facebook.com/mndaq www.twitter.com/MNDQueensland	MND and Me FOUNDATION QLD MND Centre. Cnr Birubi and Stanley Street East, Coorparoo Qld 4151 Postal: 5/28 Cavendish Road, Coorparoo Qld 4151. Phone- 07-3394 5333

Organisations	Names	Frequency
Domicilliary nursing	Blue Care Home & Community Care (07-4982 1488)	Every day
Community nursing	Blue Care Proserpine Community Care (07-49451790)	On every alternate days
Day respite service	Blue Care - Moura Day Respite Service (07-4997 3383).	7.00am to 3.30pm everyday
Therapy service	Blue Care - Therapy Services- Bundaberg (07-41530521)	Thrice a week

Time/Activity	Barriers/Facilitators encountered	Solution to overcome barriers	Approximate financial cost
7:00 a.m.- Getting out of the bed	Mattress elevators installed in the bed to rise from sleeping position	Wheelchair is kept close to the bed to facilitate getting down the bed. Personal assistance of family carers a d professional care giver is required	$60.99 (Bentley, O’Connor, Breen, & Kane, 2014)
7:15 a.m.- Going to the toilet	The toilet floor is quite slippery and has led to injurious falls in the past. Decreased mobility makes it extremely difficult to reach the toilet, beside the commode.	Some alternatives that do not need transferring from the room has been made available, such as, bedpans and urinals. Raised commode seats have been installed. Safety handles, shower rails and bath chairs have been installed. Roll-in showers enable transferring to the bath chair from the wheelchair.	$89.5 (Talley, Wyman, Bronas, Olson-Kellogg, McCarthy, & Zhao, 2014)
7:35 a.m.- Dressing and combing hair	Failure to move the arms to unbutton or put on a dress; Difficulty to lift hands to comb hair	Personal assistance needed. Velcro closures used in dresses, in place of buttons; slip-on shoes provided; long handled shoelaces used; sock aids bought for preventing strength on the limbs while slipping on socks; seated in  straight backed chair for dressing; weaker side is dressed first	$33.59 (Aoun, Bentley, Funk, Toye, Grande & Stajduhar, 2013)
8:00 a.m.- Having breakfast	Difficulty in picking up the spoon or knife, while eating.	Dietician recommended food pattern followed; Meals-on-wheels service used; Thickened liquids an softer foods consumed; Long plastic tubes attached to glasses to eliminate lifting them up, while drinking	$30.25 (Bentley, O'Connor, Kane & Breen, 2014)
8:20 a.m.- Going down the stairs	Loss of strength of voluntary muscles make it impossible to climb down the flight of stairs	Portable ramp built over which the wheelchair moves; Railings installed on both sides of the ramp; Well lit stairways; Leg braces used	$200.99 (Lee, 2013)
9:00 a.m.- Reading the newspaper	Difficulty in sitting straight and reading news articles	Sofa adjusted to a height by the caregiver; board attached at eye level with clipped newspapers	$79.99 (Gibbons, 2013)
10:00 a.m.- Taking a stroll in the backyard	Weakness in the muscles have limited the ability to move from the room to another surface	Assistance required; Long aluminium wheelchair ramps at the entrance to the home helps eliminates the barriers and helps to reach the backyard; two accessible exits and entryways; carpets are firmly attached to floor;	$112.75 (Gonzalez, Fausset, Foster, Cha & Fain, 2015)
11:00 a.m.- Speech therapy	Slurred speech and reduced breath supports while speaking	Speech language pathologist helps to perform speech drills	$150.99 (Gibbons, 2013)
12:30 p.m.- Having lunch and medicines	Difficulty in chewing and swallowing	Meals-on-wheels service used from domiciliary  nursing centre; Menus that need short preparation time and are of liquid consistency used	$37.60 (Winterton, Warburton & Oppenheimer, 2013)
1:15 p.m- 4:30 p.m..- Afternoon sleep and watching television	The condition has also resulted in sleeping difficulties	Mattress overlays to allow blood circulation and hospital style beds with adjustable heights installed	$60.99 (Medola, Elui, da Silva Santana & Fortulan, 2014)
6:00 p.m.-  Sitting by the porch	Same as strolling in the backyard
7:30 p.m.- Having dinner and medicines	Same as having lunch
8:20 p.m.- Going to sleep	Same as afternoon sleep

Social withdrawal commonly refers to the condition that is experienced by an individual, expressing the desire to make social contact with the family and community members. However, the effects of motor neurone disease often lead to severe physical restriction or impairment in the patients that prevent them from maintaining appropriate social contacts (Donati, Demory & Arnal, 2014). The International Classification of Functioning, Disability and Health (ICF) define participation restrictions as problems or scenarios that are experienced by an individual in a range of life situations. Such impairment in motor control or bodily functions lead to a limitation in the activities of patients suffering from motor neurone diseases and often makes it extremely difficult for them to execute major tasks (World Health Organisation, 2007). I face similar situations where my disability is not just restricted to my physical functioning. Loss of motor control has resulted in my failure to enjoy a civic life, go out for recreational purposes with my kids and husband to visit spiritual or religious places of interest. The term social participation or social engagement refers to the degree of participation of an individual in the society or community. Prior to being diagnosed with motor neurone disease, I used to spend adequate time with my kids and husband. Our social engagement activities included going to the parks, children playgrounds, movies, and dinners. Moreover, I used to regularly accompany my kids on their way to school and also spent time with them by playing in our backyard.

Personal Account of Living with MND

However, the diseases condition has left me paralysed. Loss of sensation below my neck has led to severe impairment in participating in any form of leisure activities with my family members. Patients suffering from motor neurone disease often face social withdrawal from the immediate family members and friends due to their failure to participate in events that occur outside their house (Champion, Rose, Payne, Burns & North, 2014). I began experiencing more social withdrawal from my family, following diagnosis of my symptoms. This significantly reduced fewer visits to our acquaintances with my family. Furthermore, I began to demonstrate a failure to walk for long distances, which in turn made it difficult for me to accompany my kids and husband for the church attendances. Our most common form of social interaction has lately become restricted to visits to the clinic. Moreover, my impairment in going with the kids to the backyard for playing or taking them to the movies has distanced them from me. Low levels of social interaction have often resulted in an increase in psychological distress among motor neurone disease patients (Pagnini, 2013). Moreover, research evidences suggest that the social restrictions mentioned in the classification standards need high levels of support at the social level, thereby improving the quality of life. Difficulties in swallowing or chewing have led to the use of meals-on-wheels approach for my feeding. This has also created significant impacts on my social interaction with family and friends, owing to the fact that I am unable to go out with them for dinners or any other celebration.

Community participation refers to the involvement of all people, residing in a community to solve their problems. Wheelchair ramps were installed at all points of entry and exit of my house to provide me assistance to get into shops or other portions of the community (World Health Organisation, 2007). Furthermore, the disease often results in weakness in the lips, tongue, chest, and vocal cords. This creates significant negative impacts on the speech, thereby resulting it to become slurred, faint, or unclear. A year after being diagnosed with motor neurone disease, my facial expression and gestures began to change. Hence, one major challenge was encountering difficulties in communication that gradually worsened, with a progress of my symptoms. It generally takes great effort for individuals suffering from motor neurone disease to communicate appropriately. Hence, it is imperative to assess the needs and preferences of the patients. I overcame this challenge by taking assistance from a speech and language pathologist, who was able to provide me with the necessary therapy techniques and also recommended suitable communication aids. My husband established contacts with a speech therapist, who primarily provided help in maintaining swallowing and communication skills. The therapist was involved in demonstrating a series of exercises, to which I showed compliance (Körner et al., 2013). The primary objective of these exercises was related to maintaining flexibility in the joints and muscles that were affected by the motor neuron disease. Furthermore, I also began practicing learning appropriate gestures and body language that would facilitate better communication with my family and acquaintances. I encountered breathing difficulties that posed as a major challenge and led to a deterioration of my overall health related quality of life.  Assistance was also taken from the therapy service centre, mentioned previously.

Caregiving and Support

This helped me to clear my chests, thereby bringing about an improvement in my lung capacity Communication boards are often included for conveying topics, messages, and/or letters (Lilly et al., 2014). Words that are usually included on such communication boards contain lists of foods, positioning requests, comfort items, and social phrases. Owing to the fact that my paralysis has left me incapable of pointing towards letters, I began using my eye gaze as a reliable communication method (Spataro, Ciriacono, Manno & La Bella, 2014). Further environmental changes that can be implemented to facilitate comfortable living of such patients include creating provisions for mobility scooters and portable ramps in the community. Moreover, facilities for stand-up chairs, adjustable protector cushions and patient lifters should be available in the community, to enhance environmental participation of the patients.

Different aspects of motor neurone disease involve showing an adaptation to some radical changes brought about in the self-image, maintenance of positive wellbeing, and future expectations. These factors mentioned above have been found to play an essential role in resulting in independent fluctuations on negative mood and stress, thereby affecting coping mechanisms, social support, and the perceptions of control that intervenes in existing relationship between the psychological and physical status of all patients. Research evidences have established strong correlation of motor neurone disease with major depressive disorder, which in turn have been related to a range of physical and psychological factors (Connolly, Galvin & Hardiman, 2015). Being seriously disabled resulted in the development of a maladaptive coping style. According to several research studies, the patients suffering from motor neurone disease often display a high degree of personal belief in controlling over major life events (Barton, 2017). Upon being diagnosed with the condition, I continued to exert my mastery over my thoughts and actions. Initially, I became extremely emotional upon learning of my short life expectancy and began sniggering from depression, with the gradual progress of the disease that resulted in loss of motor control. However, my future reaction towards the range of disabilities that I am currently suffering from will focus on demonstrating a noticeable detachment and calmness towards my illness. Perceived locus of control might create an influence on the mood, attitude, and motivation to treatment (Nario-Redmond, Noel & Fern, 2013). This in turn might result in severe psychological consequences.

Hence, I will take all possible efforts to maintain prevent onset of any feelings that lead to depression, helplessness, anxiety or low self-esteem. Initially I was well aware of my abilities, personality and appearance that gave me a good feeling regarding my self-image. Having a speech or physical impairment often results in people develop poor self-image and consider themselves unworthy of care and love (Zale, Lange, Fields & Ditre, 2013). I intend to react to my disabilities by maximising the positive and minimising the negative influences. I will focus more on my abilities, when compared to my limitations. Further efforts will also be taken to avoid making unrealistic comparison with other people of my age (family members or friends). I also intend to set certain realistic goals for myself, keeping into account my limitations. I will provide myself the extra time required for reading different material and also intend to reward myself for displaying perseverance. Furthermore, self-concept encompasses the collection of the beliefs that are held by an individual, about oneself. In other words, it can be distinguished from self-awareness that focuses on the extent of defining self-knowledge (Bogart, 2014). It is based on an interaction of self-knowledge, esteem and the social self. I intend to utilise my creative skills and comprehend poems, with limited speech ability. This would enhance my self-image and lead to personal development.

Organisations Providing Support for MND Patients

Paternalism refers to the process of interfering with the liberty of action of an individual, which in turn is justified by several reasons that refer exclusively to the good, welfare, needs, happiness, values, and interests of the individual who is being coerced. Legal frameworks and theories for paternalism often establish its importance in cases when the decision taken by a patient would result in serious harm to him/her or others (Sjöstrand, Eriksson, Juth & Helgesson, 2013). Justified paternalism that is exerted in acute rehabilitation centres, upon people suffering from disabilities is usually based on the impaired psychological or cognitive organisation of the patients. Paternalism is found to commonly occur in acute disability rehabilitation centres when the patients display a resistance to treatment or demonstrate non-compliance to the proposed therapeutic programs. Patients suffering from disability often object to following the daily routines that encompasses their therapy programs. Furthermore, a resistance is also displayed towards the intensity and nature of the therapies. Hence, paternalism is exerted by allied health professionals under circumstance that require them to forcefully make the patients adhere to the recommended dietary modifications, the medications they require, and the aesthetics of rehabilitation settings (Lord, 2014). Furthermore, some disabled patients also insist on engaging in a range activities that might pose direct harm to them, such as, walking unassisted due to poor balance or muscular weakness. Hence, paternalism is exerted in all these cases. Self-efficacy reflects the perceptions and beliefs of an individual regarding their capability to perform specific tasks or activities. Low self-efficacy often acts as a barrier to adherence of rehabilitation techniques that the clinicians can improve or create an impact on. The theory of self-efficacy defines a person's confidence as the ability to perform activities. This theory is put to practice at rehabilitation centres that examines the ability of all disabled individuals to bring about changes by exerting direct control over their inner processes of self-monitoring, goal setting, problem solving feedback, and self-evaluation.

The professionals identify the patients with low self-efficacy before prescribing exercise programmes. This is followed by making adjustments to the individualized care plans (Choi & Twamley, 2013). Hence, individualized care that meets the demands and preferences of the patients improves their self-efficacy, thereby enhancing adherence to these programmes (Lewin, Jöbges & Werheid, 2013). Care professionals often make efforts to increase independence of the disabled patients with the aim of enhancing their ability choose their lifestyle and to speak up for themselves (Peiris, Shields, Brusco, Watts & Taylor, 2013). Many professionals also promote independence with the aim of helping the patients settle into a life or home, of their choice. Independence is generally promoted by creating provisions that help the patients to exert their autonomy (Brown, Therneau, Schultz, Niewczyk & Granger, 2015). The professionals also allow disabled individuals to get actively involved in the process of decision making and increase their opportunity of accessing the social, physical, economic and cultural environment, thereby enhancing independence.

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