SECTION A Clear statement of selected disability from list, selected age, rural area, and described home.

I am a 35-year-old female living with my husband and 2 school age children in Charleville, Western Queensland. I had been diagnosed with Myasthenia Gravis five years ago. My home is low set with 4 steps, and has 2 levels inside, with my bedroom and bathroom on the upper level.
SECTION B 1 Brief outline of effect of condition on bodily functions http://www.australianprescriber.com/magazine/30/6/artid/927/

http://mychroniclife.com/2009/06/08/living-with-myasthenia-gravis/ http://www.myasthenia.org.au/html/diagnosis.htm http://www.freewebs.com/myastheniagravis/nursearticle.htm http://www.mga-charity.ie/what-is-mg/patient-stories/assumpta-creavan/ http://www.myasthenia.org/LinkClick.aspx?fileticket=0cGAIBaZ2A8%3D&tabid=171 https://profiles.google.com/Myastheniagravisindia/about Many of us does not know what it is to live our life with a rare disease called Myasthenia gravis. I would like to share my MG experience with you. Myasthenia Gravis (MG) is a neuromuscular autoimmune disease that affects the use of muscles normal communication between the nerve and the muscle is interrupted, leaving the muscle weak and fatigued. Myasthenia Gravis (MG) is not uniform in the way it affects people. Different people have difficulties with different muscle groups - severity may fluctuate, and reaction to treatment can vary as well. The course of the condition is variable, but in most cases progressive. Symptoms include: I am 35-year-old, living with my husband and two lovable school going children in Charleville, western Queensland region. I worked as a Receptionist in an out-patient clinic in 2006. It happened to me while I was at work. One day, I noticed that I could not focus well when reading, my speech became staggered, and my legs weaker. Then I fell down. After that incident, I was brought to our rest room with the assistance of 2 nurses. My symptoms were improved after 2 hours of bed rest. Everybody thought it's because of anaemia or hypoglycaemia I didn't give much importance that time. Everything went well after that. But that was not an end. I got the symptoms again when I went to a night club with my colleagues. While I was talking and laughing with my friend, I realised that I couldn't smile and my eyes were drooping. My friend understood that something strange is going on. After few minutes, I dropped the wine glass from my hand and fell down on the floor. Everyone was frightened and called the emergency service. It was informed to my family then. After few hours, I woke up and I saw my husband and kids standing next to me with worried face. After thorough physical examination, blood tests and electro-diagnostic testing, I was diagnosed to have Myasthenia Gravis. Eventually I was started on drug therapy to control my symptoms. I was prescribed with Mestinon (ChE inhibitor drug). That drug really worked well for me, but left with few side effects like fatigue, nausea, and muscle cramps. It is not often realised that there is no single test that absolutely proves the diagnosis of However, the combination of history, clinical examination, nerve tests and blood tests establishes the diagnosis beyond reasonable doubt. If there is doubt after the tests have completed often a trial of treatment for MG helps clarify the issue, and the diagnosis also becomes clearer in the longer term. MG. often been often

My symptoms started to diminish soon after commencing the drug Mestinon. Then I went back to work after few days. But I couldn't work like before. I found that I was easily fatigued. I got remission once while I was driving my car. I felt so hard to focus on the road and drive and my legs

became very heavy. I was having double vision and could not able to drive. Fortunately I got some strength left to drive my car to the hard shoulder and put break. I was trying to call for help. But my speech became slurred and couldn't frame a sentence. I showed my medic alert bracelet to him. He assisted me to reach the hospital in time. I was prescribed with steroids in addition to Mestinon. Because I skipped my medicine on that day I was resulted with life threatening situation. After that I was instructed by the doctor again to take my tablet before engage in activities to obtain maximum relief. I had few remissions and exacerbations since after being diagnosed with MG. Current therapies for MG include: 1. Anticholinesterase Therapy - an attempt to strengthen neuromuscular transmission with the use of drugs such as pyridostigmine bromide (Mestinon, Mestinon extended-release) and neostigmine (Prostigmin). 2. Immunosuppressant Therapy - Prednisone; azathioprine (Imuran); cyclophosphamide (Cytoxan); cyclosporine (Sandimmune); mycophenolate mofetil (CellCept). 3. Plasma Exchange - Plasmapheresis 4. Intravenous Immune Globin 5. Thymus & Thymectomy 6. Other Therapies - atropine; pro-banthine; ephedrine 7. For the past two years, I have no remissions. I started to live with MG. I understood the factors like stress, drugs, infection, temperature extremes etc. exacerbate symptoms.
I used to be reasonably active, even though me age, I could get out quite easily and everything. But now it has restricted us for going different places. I mean, even from going out socially and dancing, or anything like that. Ive had to give up driving and it has made a lot of difference to us also, like you can hear me voice and breathing, and everything like that. It has made a lot of difference, and I feel that every so often I know things are slowing down and I can feel muscles in me body gradually deteriorating. (Man with MND in his seventies, diagnosed for 3 years)

2 Effects on Family unit

My husband and my kids were terribly affected by my diagnosis. It was hard for us to believe and our life has changed since after knowing my disease condition. My little kids could not understand like what happened to me. My husband and my parents gave their helping hand to bring me out of the darkness. I was in denial state for a while. My husband and my parents gave their helping hand to bring me out of the darkness. My husband changed his job to part-time in order to look after me and my kids. I felt so guilty to see my elderly parents working hard. My husband's involvement in my care was very much appreciated. Whenever I felt low and depressed, he was the one boosted me with confidence. He never let me down. He never showed his stress to me. He and my kids tolerated my mood swings. I became depressed and lost after taking career break. My family and support groups helped me to cope up with my lifestyle changes. My family's participation in attending counselling provided them with knowledge about MG and how to cope and live with that. I still have lapses but these are getting less and less. I feel stronger with my family support. My children are grown up now. They do understand and helping me in this battle. As with other chronic illnesses, managing people with CFS requires consideration of the psychological and social impacts of the illness. People with CFS may be unable to continue full-time work, so financial difficulties may rapidly develop. Similarly, CFS frequently disrupts high school or university studies. Successful return to work or school after a prolonged illness with CFS often requires a rehabilitation program

incorporating medical treatments, psychological support and occupational therapy. Doctors may need to coordinate the help of other healthcare and educational professionals to implement this. The impact of the illness on the person's family should also be considered. In some circumstances it may be useful for people with CFS to bring their spouse or partner to a consultation, both to help them better understand the illness and to discuss their difficulties in coping. Parents of children and adolescents with CFS should be seen regularly, and may require additional support and counselling. Doctors should be prepared to act as advocates for their patients in negotiations with employers, educational institutions and social welfare organisations. For instance, part-time work or school alternatives may need to be arranged, or disability allowances may need to be sought. Joining a patient support group may be valuable for some people. CFS societies can offer individual and group support, education, and advice about access to social welfare agencies (Box C). Individuals may also benefit from the opportunity to exchange information on how to cope with the many practical day-to-day difficulties that arise for those living with this debilitating condition. However, the quality of advice given can vary and it is therefore useful for the doctor to have ongoing knowledge of the activities and attitudes of local support groups.

3 Identify International, National, State, Local organizations

The Australian Myasthenic Association in NSW

Glenda Bidner, President 108 Bantry Bay Road Frenchs Forest NSW 2086 Tel: (02) 4283 2815 (Glenda Bidner) E-mail: info@myasthenia.org.au Web: www.myasthenia.org.au Muscular Dystrophy Queensland

Myasthenia Gravis Association of Queensland, Inc. PO Box 16, Mt Gravatt QLD 4122 Tel: 1 800 802 568 E-mail: Mgqld@gil.com.au Web: www.mg-qld.gil.com.au

Unit 13 191 Hedley Ave Hendra Qld 4011

Reception: (07) 3607 1800 Freecall:1800 676 364 International: +61 7 3607 1800

Disability Services Australia Corporate Office 76 Harley Crescent Condell Park NSW 2200

Phone: 02 9791 6599 Fax: 02 9796 3101

Myasthenia Gravis Friends and Support Group

29 Kingsdown Road MADDINGTON WA 6109 Public Charleville

Address: 72 King St, Charleville, QLD, 4470 Phone number: (07) 46541736

Myasthenia Gravis Foundation of America, Inc. 355 Lexington Avenue 15th Floor New York, NY 10017-6603 mgfa@myasthenia.org http://www.myasthenia.org

http://www.myastheniawa.info/ http://www.health.wa.gov.au/HACC/providers/reporting.cfm Myasthenia Gravis Assocn of Qld Inc http://www.health.qld.gov.au/healthservices/default.asp

QFinder lists public, private and NGO health and community services which are located in Queensland and offer a service to the public. 13HEALTH (13 43 25 84) is a 24 hour, 7-day a week health advice phone line for all Queenslanders. mdqld.org.au
http://www.nind.nih.gov/disorders/myasthenia_gravis/ org_myasthenia_gravis.htm 4 Outline how organizations will help

The above organisations help to provide support and information to Myasthenics and those who care for Myasthenics and to raise awareness of the disease in the community and with health professionals. Support groups and associations are beneficial in that: members normally can empathise with your experiences. you will realise that you are not alone in your battle with MG. you have the opportunity to share experiences and ask questions. you have the opportunity to help others and make new friends. http://everyaustraliancounts.com.au/changing_lives/at_work/

http://www.health.gov.au/internet/main/publishing.nsf/content/7E7E9140A3D3A3BCCA25 7140007AB32B/$File/stratal3.pdf

http://www.carerswa.asn.au/information-and-support/government-assistance/government-benefits/ http://www.dsa.org.au/life_site/text/intro/index.html www.health.wa.gov.au/HACC SECTION C

Living a Day http://www.jstor.org/pss/3452596

Time/Activity

Ease of doing an Barriers or activity or Facilitators you participating (0-4) have encountered 0= no difficulty 4= complete difficulty

Your solution/s to overcome the barriers

Approximate financial cost to you

Getting up from the 1 bed Going to toilet Bathing Going up/down stairs Eating Reading Getting on a bus Driving 0 1 2 2 1 2 3

Shopping Exercise Going back to bed

2 2 3

SECTION D http://clinicalcenter.nih.gov/ccc/patient_education/pepubs/copechron.pdf Social: Family & Friend relationships

Whenever possible, doctors should seek to work cooperatively with support groups. If effective dialogue is to be established and maintained, professionals must be sensitive to the concerns of patient groups, particularly in relation to the inappropriate use of pejorative and stigmatising terms.521 Arrogant and dismissive professional attitudes, amplified by polarised press coverage, can contribute to the alienation of patients from traditional medicine.517,522 Poor communication can also perpetuate misconceptions about aetiology, natural history and treatment rationales, which may themselves contribute to disability.
The reason for this complexity is that much confusion abounds over what is actually meant by the term, quality of life.Quality of life is therefore a dynamic concept that not only incorporates physical, psychological and social domains, but individual perceptions and values of their role function.

relative who has MG?

Most myasthenics believe that the support of their family and friends is extremely important to their task of coping with this disease. Your willingness to be a part of your relatives support systemis quite valuable toward his/her well being. Recognize that your relative has experienced a loss, i.e., a loss of muscle strength, perhaps also a loss of functioning at home, at work or at play, and a loss of a perception of themselves as having a well body. Therefore, allow themtime for grieving their losses. The stages of denial, anger, bargaining, depression and acceptance are normal for people coming to terms with any type of major loss. Let themknow that you are there to listen when they want to talk. Offer your presence and your time. Dont feel that you must solve all of their problems or give advice. Sometimes a good listener who genuinely cares is all that is needed. Empathize rather than pity. Empathy conveys your understanding of the other persons feelings, whereas pity conveys only your distress at your perception of their suffering. Pity is not welcomed by most myasthenics because they find it demoralizing. Your distress about their illness also compels themto help you feel better by offering your assurances that they will be all right. Learn as much as you can about MG. Request literature fromyour localMG Chapter. Attend MG Meetings or support groups with themif such programs are provided in your area. With your relatives permission, you may want to accompany themto their doctors appointment so that you may hear, learn and ask questions. Myasthenics may need help with certain tasks, but find it difficult to ask for help. They are reluctant to bother

people who they know are busy with their own responsibilities. Offer to performspecific tasks periodically, such as helping with child care, hair styling, shopping for groceries, clothing, or their Christmas gifts, wrapping their presents, driving themto a doctors appointment or taking themout of the house for a social excursion. Be prepared for the unpredictable ups and downs of MG. The myasthenic may have to cancel an eagerly awaited social outing due to unexpected weakness. Do not feel hurt or suspect that you are singled out for these cancellations. Many myasthenics hesitate to make advance plans, preferring instead, to do things when they feel strong enough. Now for a few donts. Dont give simplistic advice like, Maybe you should just take vitamins exercise moreeat betterget more rest, etc. Chances are they already have opinions about these things, and your statements reveal that you dont understand the disease. Dont minimize or dismiss their complaints with if you wouldnt dwell on it, it wouldnt seemso bad. No one can be expected to be stoic and brave at all times. Myasthenics frequently hear the comment, but you look so well! While you may give this compliment intending to boost their moral, myasthenics often think that you are doubting that they are indeed ill. Although
National Office 355 Lexington Avenue, 15th Floor New York, NY 10017 Phone: (800) 541-5454 (212) 297-2156 Fax: (212) 370-9047 E-mail: mgfa@myasthenia.org Web site: www.myasthenia.org

the myasthenic may look like the picture of health, be aware that the symptoms of muscle weakness and rapid fatigue are not always visible to your eyes. Dont disappear fromthe scene because you dont know what to say or fear saying something that would make it worse. Most myasthenics welcome your questions about MG and appreciate the opportunity to talk to someone who cares to listen. Dont withdraw froma loved one because you suspect an emotional powder keg will explode if you bring up a problemthey are having. Rather, if you or they ignore a problem, it is bound to worsen or grow more awkward to handle. If talking about it brings tears, dont run away. Tears can be quite healing. A touch of the hand or a hug in silence can convey more comfort than any words or advice ever could. While being a good listener is an important part of offering support to your relative, they also value a friend who can be honest with them. You can let your relative vent his/her anger, frustration or bitterness, then later at a better moment, offer your honest feedback. Try to recognize when your relative needs help beyond what you can offer and encourage him/her to seek professional counseling. Finally, remember that the myasthenic needs to participate as normally and fully as they can in life. Dont abandon all family activities, normal conversations, affection and laughter. Remember, before you became a part of a support system, you were and still are Aunt Sally or Cousin Bud!!!! - Guy R. Corsello, M.D. Mercy HospitalI often Iu

General contd.

home. Make a list of emergency phone numbers and addresses and keep them in a practical place. In case of fire, have an emergency exit plan. Keep a fire extinguisher handy. Keep a flashlight in a convenient location in case of power outages. Consider using a personal medical alarm help button system such as Lifeline. Wear a medical identification bracelet or pendant. If you live alone, have a family member or friend check on you daily.

Be alert for objects that might cause you to trip. Keep walkways clear. Repair any holes or rough spots in your flooring, walkways or steps. Mop up floor spills immediately. Avoid rushing to cross the street or to answer the telephone or doorbell. Use non-skid wax or avoid waxing floors. Make certain that rugs lie flat. Secure them with carpet tape or tacks. Dont use throw rugs. Install sturdy railings on both sides of staircases. Keep stairs fee of clutter. Take time to regain your balance when rising from a chair or bed. To maintain balance when picking objects up off the floor, stoop down, bending your knees rather than leaning forward. Sit in chairs that have armrests sturdy enough to assist you when getting up or sitting down. Place light switches so that you can turn on lights before walking into a darkened room. Install bright lighting throughout the house. Install smoke alarms on every level of your home and be certain that they work. Install outdoor lights at all entrances to your

Keep the floor dry to avoid slipping. Use a hand-held showerhead to make it easier for help in bathing and rinsing off. Install a raised toilet seat and grab bars on the wall if you have difficulty rising from a sitting position. To avoid burns, set the hot water temperature at 120 or lower.

Kitchen Safety

Slide heavy containers of food along the counter (or use a cart) instead of lifting them when arms are weak. Put food in smaller containers, which are easier to lift and handle. Place items that you use frequently within easy reach so there is no need to climb. To prevent fire, keep loose fitting clothes, towels and curtains away from the stove burners.

Bedroom Safety

Place your bed within easy reach of lights and telephone. Remove wheels or casters from your bed and chairs. Use a night light to light the way between your bed and the toilet.

www.myasthenia.org

Bathroom Safety

Limit the time you spend in the shower or bath to avoid weakness. Have someone assist you with bathing if weakness is a problem. Put non-skid strips or a rubber mat in the tub or shower. Install grab bars on the wall or side of the tub or shower. Use a shower chair or bath seat with rubber grips if you are unsteady.

HOME INJURY PREV ENTION HOME INJURY PREV ENTION

The MGFA mission is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and closely related disorders and to improve their lives through programs of patient services, public information, medical research, professional education, advocacy and patient care.
This publication is intended to provide the reader with general information to be used solely for educational purposes. As such, it does not address individual patient needs, and should not be used as a basis for decision making concerning diagnosis, care, or treatment of any condition. Instead, such decisions should be based upon the advice of a physician or health care professional who is directly familiar with the patient. The information contained in this publication reflects the views of the authors, but not necessarily those of the Myasthenia Gravis Foundation of America (MGFA). Any reference to a particular product, source, or use does not constitute an endorsement. MGFA, its agents, employees, Directors, Chapters, its Medical/Scientific Advisory Board, and its Nurses Advisory Board or their members make no warranty concerning the information contained in this publication. They specifically disclaim any warranty of merchantability, fitness for any particular purpose, or reliability regarding the information contained herein, and assume no responsibility for any damage or liability resulting from the use of such information. 2010 by Myasthenia Gravis Foundation of America, Inc.

Home Injury Prevent ion

More people are injured in their homes than anywhere else. Home safety is a concern for some people with myasthenia gravis (MG). Those who have difficulty walking, double vision or general weakness and fatigue are at increased risk for injury. Of particular concern is the risk of falling. You can minimize your safety risks especially your risk of fallingif you follow some suggestions. With some forethought, most accidents can be prevented.

Wear low-heeled, comfortable, supportive footwear with non-skid soles at all times.

A helpful guide for patients and their caregivers. F AG M

355 Lexington Avenue, 15th Floor New York, NY 10017-6603 (800) 541-5454 (212) 2972156 (212) 370-9047 fax mgfa@myasthenia.org www.myasthenia.org

www.myasthenia.org 800.541.5454

Things to Do if You Are Injured

Call for help at once. Keep a telephone and emergency numbers on a low table. It will be easier to reach if you fall and have difficulty getting up. Consult with your doctor even if you dont think you are badly hurt.

General

Approved by the MGFA Medical/Scientific and Nurses Advisory Boards

If you have an unsteady gait, using a walker or a cane after training by a physical therapist can lessen the risk of falling. Dont hold onto furniture or walls for support.

www.myasthenia.org

800.541.5454

employment increased QoL in patients with cancer, osteoarthritis, and spinal cord injury [48]. For that reason, adequate therapy and adjustments in the workplace are important to keep MG patients in the working environment with such positive consequences as improved health and increased net income. While at work, individuals are stimulated by physical and mental activities and social contacts. In addition, MG patients, especially young ones which face a long job as well as disease period, should be given counseling regarding future job possibilities.

http://www.aifo.it/english/resources/online/apdrj/apdrj203/scord-srilanka.pdf
The Governments of Australia and many private organisations work together to ensure equal employment opportunities for people with disabilities.

All participants needed to instigate home modifications to accommodate the increasing effects of MND, such as changing a bed height, ramps outside for wheelchairs and bathroom modifications. Some moved their residence to be nearer their families and their care services, some moved to accommodation with additional nursing care and some into nursing homes in recognition of future care needs. Change or lack of change in the environment often restricted participants lives. Unless the restrictions were overcome, negative consequences of lowered self-esteem, feeling humiliated and loss of dignity ensued.
that individuals who have access to spinal injury rehabilitation, have improved health, psychological and social outcomes In terms of employment, it was not surprising to find that more individuals who had received rehabilitation were now employed, in comparison to those who had no rehabilitation. This suggests that there are other variables that affect the number of people taking up employment following injury, such as, access to places of work, employers attitudes and more importantly, the individual's belief in their abilities. it can clearly be seen that overall those who have received rehabilitation appear to have more realistic goals and ambitions compared to those who had no rehabilitation. This suggests that the wealth of information received during rehabilitation encourages the individual to think about their future once discharged from the spinal unit. Although the rehabilitation group as a whole were more realistic as regards the future, whether or not these goals and ambitions are achievable will ultimately depend upon themselves and the social structure of their community. In respect of this, to fully reap the benefits of rehabilitation, more support needs to be given to individuals once they are discharged from hospital in terms of both reintegrating into the community and in the achievement of their goals and ambitions, thus helping to improve their overall life satisfaction. More importantly it has highlighted the overall benefits of having specialised spinal injury rehabilitation in terms of health, physical function and psychosocial integration.
For people with disabilities, being part of community life is essential. This includes having access to the same types of services and enjoying the same opportunities as the rest of the community. For the greater part of the 20th Century, many people with disabilities were separated from society or unable to access services because of their particular disability. The United Nations played an important role in bringing about changes which would enable people with disabilities to be more fully integrated into their communities. New legislation and

increased services for people with disabilities have made this a reality in Australia. Dating from the early 1980s, many organisations were formed across Australia by people with disabilities to represent these interests and to improve opportunities and services for people with disabilities within the community.

http://www.dsa.org.au/life_site/voice/indREFERENCES:

Australasian Rehabilitation Nurses' Association (2002). Rehabilitation Nursing - Scope of Practice 2nd Edition. Available from: <http://www.arna.com.au/position.html>. [Accessed 08 November 2002]. Carers WA [online]. (2010). Available from: <http://www.carerswa.asn.au/>. [Accessed 04 January 2012]. Connie (2009). Living With Myasthenia Gravis. 08 June 2009. My chronic life [online]. Available from: <http://mychroniclife.com/2009/06/08/living-with-myasthenia-gravis/>. [Accessed 03 January 2012]. Disability Services Australia (2008). Life to Live. Available form: <http://www.dsa.org.au/life_site/text/index.html>. [Accessed 05 january 2012 ]. Dowrick, C. (2006) The Chronic Disease Strategy for Australia, The Medical Journal of Australia, 185(2), p.61-62. Eiser, C. (1997). Effects of Chronic Illness on children and their Families. Advances in Psychiatric Treatment [online]. 3, p.204-210. Available from: <http://apt.rcpsych.org/content/3/4/204.full.pdf>. [Accessed 07 January 2012 ]. Jester, R. (2007) Advancing Practice in Rehabilitation Nursing, UK: Blackwell Publishing, p.1-14. Loblay, R. and Stewart, G. (2002) Chronic Fatigue Syndrome, The Medical Journal of Australia, 172(8), p.17-55. Available from: <http://www.mja.com.au/public/guides/cfs/cfs2.html>. [Accessed 09 January 2012]. Myasthenia Gravis Friends and Support Group[online]. (2010). Available from: <http://www.myastheniawa.info/>. [Accessed 08 January 2012]. Myasthenia Gravis association [online]. (n.d.). Available from: <http://www.mga-charity.ie/what-ismg/patient-stories/>. [Accessed 04 January 2012]. Myasthenia Gravis Foundation of Illinois (2008) myasthenia Gravis: A Manual for the Health Care

Provider.[Accessed 06 January 2012]. Available from: <http://www.myasthenia.org/LinkClick.aspx? fileticket=S472fPAE1ow%3D&tabid=69%20nursing%20care.lifestyle%20mx.challenges>. NIH Clinical Center (1996). Coping with Chronic Illness. Available from: <http://clinicalcenter.nih.gov/ccc/patient_education/pepubs/copechron.pdf>. [Accessed 05 january 2012 ]. Reddel, S W. (2007). Patient support organisation. Australian Prescriber [online]. 30, p.156-160. Available from: <http://www.australianprescriber.com/magazine/30/6/artid/926/> [Accessed 04 january 2012]. Shaternick, J. (1963) Living with Myasthenia Gravis, The American Journal of Nursing, 63(2), p.7375. Available from: <http://www.jstor.org/stable/3452596 >. [Accessed 08 January 2012]. The Australian Myasthenic Association in NSW [online]. (2004). Available from: <http://www.myasthenia.org.au/html/lifestyle.htm> [Accessed 03 January 2012]. Twork, S. Wiesmeth, Susanne. Klewer, Jorg. Pohlau, D. Kugler, J. (2010). Quality of life and life circumstances in German myasthenia gravis patients. Health and Quality of Life Outcomes [online]. [Accessed 05 january 2012 ], p.1-10. Available from: <http://www.hqlo.com/content/8/1/129#>. World Health Organization (2002) Towards a Common Language for Functioning, Disability and Health ICF, [online] Available at: http://www.who.int/classifications/icf/training/icfbeginnersguide.pdf [Accessed: 09 January 2012]. World health Organization (2001). New guidelines to measure health. Press release, issued 15 November 2001. [Accessed 07 January 2012 ].ex.html
Self-Concept, Body Image, Self-Esteem
there are not only costs that have to be covered by the health care system but also by the patient itself. Despite living under a healthcare system that covers neurological therapies, German MG patients incurred additional expenses due to MG (in our study about 50 EURO per month; in some cases up to 500 EURO). Such expenses involved mainly medications, housekeeping assistance, and transportation. Therefore, specific changes in the healthcare system are needed to ease burden and symptoms of MG and the related financial burden for the patient as well as the health care system. Patient:

Temporal aspects of symptom onset and diagnosis influenced self-esteem levels and instigated certain internalised coping strategies, such as problem-solving, reorientation and distancing, with a shorter duration of symptoms. Carers anxiety increases the shorter the duration of symptoms and is positively correlated with marriage duration possibly related to uncertainty over future disease progression and a future without their partners. Problem-solving and reorientation coping strategies used when ambulation and alertness decreased http://dro.deakin.edu.au/eserv/DU:30023270/kingnegotiatinglife-2005.pdf

Protecting personal integrity was a reaction to change or circumstances related to change, when participants felt devalued and demeaned as a person. A need was generated to protect personal feelings from further harm. Such instances occurred when participants experienced: sudden deterioration of a physical ability; emotional outbursts; disagreements with carers; everything going wrong in the day; feeling humiliated or embarrassed in certain situations. Various strategies were used including focusing on self, denying reality and withdrawing from the public arena and into self. To be thought of as a burden and pitied, especially in public, was a constant threat to self-esteem
The interviews focused on how they perceived they had managed to master problems encountered by their disability and their personal views about how one should act and think to manage a life with a disability. The protocols were content analysed according to grounded theory. Five categories were extracted self-trust, problem-reducing actions, change of values, social trust and minimization. These categories clustered around two broader bipolar constructs acknowledgement of reality vs. creation of hope and trust in oneself vs. trust in others. Many people with CFS struggle to continue working, despite their chronic illness, for

reasons such as self-fulfilment, social identity, or economic necessity. The doctor can provide support by appreciating the specific difficulties experienced by CFS sufferers, and suggesting appropriate coping strategies. Limited energy, cognitive impairment, and memory lapses can impair work effectiveness, placing jobs in jeopardy. Arranging flexibility, prioritising work and compensating for deficits are commonly adopted mitigating strategies.524 Unpredictability resulting from the fluctuating nature of fatigue symptoms525 is a significant problem in conforming to a work routine. Flexibility can often be negotiated in the form of shorter hours or a shorter working week, a variable work schedule with breaks for rest as needed, or discretionary task selection to match variations in capacity.524 Many patients choose to stop working, or are unable to continue, either temporarily or permanently. Practitioners should be supportive in helping patients make the most appropriate choices in relation to their own personal priorities. Those for whom "life is career", and whose struggle to keep working is proving unsuccessful, may become deeply depressed, whereas those who see the maintenance of family and social life as a higher priority may find giving up work a more rational and satisfying choice.
Pity, Paternalism, Self-Efficacy, & Independence http://web.ebscohost.com/ehost/pdfviewer/pdfviewer?vid=2&hid=119&sid=f49782f2-bd5c-4a8a-96b50ec4af4cb3d3%40sessionmgr112
By improving mobility, psychological well-being, integration in social surroundings, the stability of disease, and the possibility of employment according to

ones physical abilities, increased QoL among MG patients could be achieved.

Personal Integrity

Maintenance category Strategy Purpose Protecting focusing on self denying reality withdrawing from the public arena and into self hiding protecting personal feelings and personal integrity from more harm. often detrimental to overall personal integrity Regaining asking for help getting a sense of control back into their lives having access to everyday services reframing thoughts regaining eroded personal integrity improving quality of life for self and family it is hard work to regain personal integrity Sustaining taking advantage of circumstances pre-empting detrimental situations seeking positivity laughing giving up guilty feelings finding something achievable balancing personal integrity; going with the flow. counteracting potential negative affects in life. an active, flexible attitude to life also hard work
There is a need to improve communication between professionals and users, especially when individuals have been newly diagnosed. Peoples experiences of the illness, both physical and emotional, were discussed with regard to the changes occurring sometimes within a short period of time that impacted enormously on their lives. Lack of information, confusion as to where to turn for help or reticence to seek help can problematise already highly sensitive situations

Nursing Kearney and Pryor (2004) reviewed the ICF's relevance as a conceptual framework for

nursing, concluding that it has the potential to expand nurses' thinking and practice by increasing awareness of the social, political, and cultural dimensions of disability. These authors held that nursing conceptualizes disability from largely medical and individual perspectives that do not consider its social dimensions and recognized that people with disabilities are critical of this paradigm and its impact on their health care. Arguing that a broader view is necessary, Kearney and Pryor examined the ICF's relation to changing paradigms of disability and presented some applications for nursing. Nursing students could be taught to consider patients as individuals in the context of groups, roles, and environments and given a crucial understanding of the difference between the medical and social models of disability. The authors proposed that the ICF framework might assist the nursing profession to move away from its current focus on impairment and broaden the focus of nursing to include social as well as physical dimensions in the experience of the individual. In a differing vantage point, Heerkens, VanDerBrug, Ten Napel, and Van Ravensberg (2003) described the use of the ICIDH, the precursor of the ICF, by allied health and nursing professions in the Netherlands. These authors concluded that the level of detail needed for a richer description of the functioning of a patient does not yet exist within the ICIDH or the ICF classification systems. Occupational Therapy Segal, Mandich, Polatajko, and Valiant-Cook (2002) described an application of the ICF in occupational therapy in the United States, a pilot study of stigma and its management, in which ICF codes were used to examine parental perceptions of the experiences of children with developmental coordination disorders. The analysis revealed that the parents believe that their children's impairments restrict their participation in society. The interactions between impairment and participation were interpreted in the context of stigma and its management. Haglund and Henriksson (2003) addressed similarities and differences between concepts in occupational therapy and the ICF. Occupational therapists need an acceptable terminology to describe a client's clinical performance. The language or terminology must be in harmony with common language in the health care system but also reflect occupational therapists' professional responsibility. Two studies were completed in which items in the International Classification of Impairments, Disabilities and Handicaps-Beta-2 draft (ICIDH-2; WHO, 1999) were compared with concepts from the Swedish version of the Assessment of Motor and Process Skills and
2005 Educational Publishing Foundation. Used with permission

4
Bruyre , VanLooy, & Peterson The ICF: Contemporary Literature Overview

the Assessment of Communication and Interaction Skills. An expert panel of occupational therapists served as raters of clients with learning disabilities and mental health problems. It should be noted that the ICIDH-2 was the last version field tested prior to becoming the ICF; thus, the results of this study likely generalize to the current ICF. Haglund and Henriksson concluded that the ICF is a useful tool for occupational therapists and supported communication between professions but also asserted that it does not replace the professional language of occupational therapists (see Reed et al.'s, 2005, discussion of clinical assessment and the ICF). Further research is indicated to examine how the ICF can be applied in occupational therapy practice. Speech-Language Pathology A number of articles describe efforts to apply the ICF to speech-language pathology. Yaruss and Quesal (2004) compared the ICIDH and ICF frameworks for study of stuttering disorders, with analysis of how the ICF can be adapted to describe the speaker's experience of the disorder. In Canada, Eadie (2003) examined the ICF as a proposed framework for the comprehensive rehabilitation of individuals who use alaryngeal speech. The author provided details about this application (including implications for

research and clinical practice in speech pathology) and endorsed the adoption of the framework by the American Speech-Language-Hearing Association (ASHA). Cruice, Davidson, and Larkins have each used the ICF in doctoral studies (Worrall, 2004). This team has also been collaborating with Travis Threats, who was the ASHA liaison for the revision of the ICIDH-2 and is currently a Senior Consultant and ASHA representative to the American Psychological Association (APA) for development of the North American clinical implementation manual for the ICF (Threats & Worrall, 2004). Audiology Worrall (2004) described a number of research efforts to evaluate audiology interventions based on the ICF and provided several applications of the ICF framework. Some examples include a project to examine the effectiveness of a participation enablement program for older people in aged care facilities and a current project funded by the National Health and Medical Research Council of the Australian Government to examine the effects of the Active Communication Education Program for older hearing-impaired clients. In Australian audiology rehabilitation clinics, ICF classifications are used to assist the student audiologist in choosing an assessment and treatment approach that is relevant to the client and uses an approach suitable to the goals of therapy (Worrall, 2004). . As newly diagnosed patients transition into the world of chronic illness or a family member adjusts to a new level of care, the staff is there to compassionately educate and comfort people with MG and their support systems. Additionally, the staff manages a community resource list and a patient to patient support list. The skilled staff also takes on the responsibility of community education and outreach as MGA informs the general public and advocates for individuals with MG in the greater community. A person with myasthenia gravis does not necessarily have to attend MGA's Treatment Center in order to request certain types of assistance from the staff. Do not hesitate to call MGA's office if you need to speak with someone regarding social and/or emotional needs.

Summary The literature evidences a significant interest and a variety of efforts to apply the ICF to a number of professional areas, such as nursing, occupational therapy, speech-language pathology, and audiology. In general, the ICF appears to be a useful conceptual http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1116&context=edicollect&seiredir=1&referer=http%3A%2F%2Fwww.google.ie%2Furl%3Fsa%3Dt%26rct%3Dj%26q%3Dthe %2520international%2520classification%2520of%2520functioning%2520disability%2520and %2520health%2520%28icf%29%2520and%2520nursing%26source%3Dweb%26cd%3D4%26ved %3D0CEAQFjAD%26url%3Dhttp%253A%252F%252Fdigitalcommons.ilr.cornell.edu%252Fcgi %252Fviewcontent.cgi%253Farticle%253D1116%2526context%253Dedicollect%26ei %3D7LwET9TuDIe0hAf1wOWhAQ%26usg%3DAFQjCNFbrvf05kpKsW3yoPCTdZ2U4OoRlw %26sig2%3D5MzWl-klb0HNSEzm2o9TYg#search=%22international%20classification %20functioning%20disability%20health%20%28icf%29%20nursing%22
2005 Educational Publishing Foundation. Used with permission

5
http://www.myasthenia.org/LinkClick.aspx?fileticket=BiunbsOud7E%3d&tabid=291 http://resources.metapress.com/pdf-preview.axd?code=q66l1407208p65n2&size=largest http://www.ncbi.nlm.nih.gov/pubmed/11268023 http://www.hqlo.com/content/pdf/1477-7525-8-129.pdf http://www.slideshare.net/dennis43/myasthenia-gravis-from-functioning-and-disability-evaluation http://www.who.int/classifications/icf/training/icfchecklist.pdf

http://www.myasthenia.org/LinkClick.aspx?fileticket=S472fPAE1ow%3D&tabid=69%20nursing %20care.lifestyle%20mx.challenges 123 http://www.aph.gov.au/library/intguide/sp/disability.htm http://doctor.ndtv.com/topicslider/ndtv/tid/367/pagenum/8/Myasthenia_gravis.html In about half of patients, there are mood disorders related with the presence of this chronic debilitating disease, however it may not be apparent. The patient makes it difficult to assert the authenticity of his/her illness, and to be recognized as such. The social and professional impact of the disease varies from person to person. It is thus necessary to inform these patients about the existing social benefits and vocational accommodations available for them, as they often do not know them or are afraid to ask due to the nonapparent nature of their disease. Lifestyle and home remedies

By Mayo Clinic staff Supplementing your medical care with these approaches may help you make the most of your energy and cope with the symptoms of myasthenia gravis: Adjust your eating routine. Try to eat when you have good muscle strength. Take your time eating and rest between bites. More frequent, smaller meals may be easier to handle. Also, try soft foods and avoid sticky foods that require lots of chewing. Use safety precautions at home. Install grab bars or railings in places where you may need support, such as next to the bathtub. Keep the floors and halls in your house clear of clutter, cords and loose rugs. Outside your home, keep the steps, sidewalk and path to your car clear. Use electric appliances and power tools. Save your energy in the bathroom, in the kitchen or at the workbench by using electric appliances, such as toothbrushes, can openers and screwdrivers. Wear an eye patch. If you have double vision, using an eye patch can help relieve this problem. Wear the patch while you read or watch television. To avoid eyestrain, periodically switch the patch from one eye to the other. Plan. If you have chores or shopping to do or errands to run, plan the activity to coincide with the time at which your medication provides your peak energy level. If you're working on a project at home, gather everything you need for the job at one time, to eliminate extra trips that may drain your energy. Ask for help. Depending on your energy level, you may not be able to do everything you have planned around the house or run every errand that you need to. Ask family members and friends to lend a hand.
Self-care advice

There are things you can do to make it easier to deal with the symptoms: If the muscles you use for speaking, chewing and swallowing are affected, try to eat softer foods that are easier to swallow and avoid foods that need a lot of chewing. Try to eat when your muscles are at their strongest, take your time eating and rest between mouthfuls. Eating smaller meals but more often may be easier than eating a large amount three times a day. Save your energy around the house by using electric items such as electric toothbrushes, can openers and screwdrivers. Plan your activities to coincide with the time when your energy levels are at their highest. This may be early in the day or soon after you have taken your medication. l MGA's office if you need to speak with someone regarding social and/or emotional needs.
http://www.mgawpa.org/html/socialsupport.html

There is a need to improve care during the period of diagnosis and to ensure that information is available to support peoples journey with MND.

Although it is a shattering and demeaning disease that is terminal, living with life goals is possible by seeking positivity, achievable activities, quiet and stress-free environments and interaction with supportive people who respect an individuals need for maintaining personal integrity.