Misunderstanding of the symptoms

The progressive nature of Parkinson’s disease will probably require that a client and family maintain contact with the Occupational Therapist over a period of many years. The Occupational Therapist will often carry out an initial assessment, set goals, and use appropriate interventions, the patient should then receive regular re assessments( Turner ,1996).The treatment required will vary as some people may have minor symptoms for many years, while others may become severely disabled and require full nursing care. The aim of the Occupational Therapist is to enable the patient to maintain as much independence and function as possible on the activities of daily living, by adapting to the loss of motor skills and using adaptive aids, whether it is for cooking, feeding, communicating or toileting(Liberman & Williams , 1995.)

The patient may suffer with long term problems such as mobility, personal care, dressing, and elimination. The Occupational Therapist may suggest such things as bed or chair transferring using equipment to heighten the furniture, this may reduce the risk of falling if the person is not stooping or bending unnecessarily. Washing bathing and personal hygiene may become difficult for the sufferer without equipment, people with Parkinson’s disease have an oilier skin than usual and therefore need to wash and bath more frequently, grab rails, non slip mats and other equipments are advisable, enabling a person to carry on with life as normal as possible before diagnosis.

Caird (1991) It is also essential that the Occupational Therapist recognizes the patient’s ability to maintain their own safety, and not only deals with the physical aspect of the disease but also the social problems that will affect the patient, treatment would take the form of rehabilitation, by preventing complications, promoting independence and maintaining independence where ever possible. The patient would be actively involved with their own treatment discussing their goals and long term care; this often empowers patients giving them a greater self worth. (Turner , 1996).

Dysphasia and drooling are mainly present in the later stages of the disease, however it does occur in approximately 80% of people suffering from Parkinson’s disease therefore an assessment with a speech and language therapist is required to determine an individual’s plan of care, including safe swallowing and consistency of diet and fluids( Penman & Thomson 1998). For this reason it is essential that a patient is monitored for aspiration, malnutrition and dehydration, as weight loss is a common feature of Parkinson Disease, which could be a result of increased metabolic demand, reduced appetite and swallowing difficulties. Patients often complain of something sticking in their throats or chest during swallowing, this often causes them to panic resulting in them refusing to eat( Perry 2001).

A speech and language therapist would be able to advise on the most beneficial treatment and most appropriate food textures. Diets of thickened liquids or pureed foods are often necessary but can have a profound psychological impact on the patients. The Appearance of pured meals usually look unappetizing and ‘like baby food'( Hotaling ,1992). It is suggested that the meal such as the meat, potatoes and vegetables should be liquidized separately to retain individual colours and tastes. Patients often find the coughing, spluttering and loss of food from the mouth very degrading and upsetting, resulting in patients becoming socially isolated and not experiencing the usual pleasures from mealtimes (Siebens,1986, 1999; Shaw and Power, 1999). Self esteem and self confidence often leave them feeling embarrassed and frustrated, resulting in the patient eating alone.

For some patients, all eating and drinking may be unsafe and therefore they require alternative feeding methods, these would be either a nasogastric for short term use or gastrostomy tube for a more secure longer-term solution. It is suggested that a PEG is more readily acceptable and comfortable for patients and gives a significant more feed than NG tube feeding (Brooks ,2001). Norton (1996) suggests that the full facts are not always talked through with the patients and relatives, and that decisions are often made on emotions and not facts about long term feeding as the removal of a peg tube is an ethical issue that is still not resolved. It is also not only the nutritional factors which are relevant but also the psychological as body image is an essential part of holistic caring.

The long term social and psychological problems of a person suffering with Parkinson’s disease may contribute to depression, although it is often under diagnosed and poorly treated, as clinical symptoms of depression can overlap with or be mistaken for those of Parkinson’s disease such as fatigue, lack of concentration and anxiety. Raised anxiety and panic attacks are also common but can often be controlled with self management strategies recommended by the Pd nurse, deep breathing techniques, yoga and distraction techniques should be promoted; the Parkinson’s disease nurse should give the patient information about these techniques and arrange referrals to appropriate classes.

The long term effect such as communication are a major issue to the patient and carers communication is central to quality of life, it is about physical and emotion needs, sufferers may often have limited speech, writing and verbal communication skills, this can have a profound effect on the quality on the patients life and the families. Patients often feel that other do not understand them and can result in becoming socially isolated, as misunderstanding of the symptoms leave others thinking that the person is drunk, being difficult or unintelligent.

All members of the family must be aware of these problems, as gestures, facial expression and speech are who we are, the frustration of not being able to communicate with loved ones by a simple smile will leave a patient becoming withdrawn, depressed, and embarrassed. Lack of mobility, swallowing difficulties and incontinence will eventually result in the sufferer becoming withdrawn socially and psychologically, they may struggle with issues such as body image and dignity, and feelings of helplessness( Laidler ,1994) these psychological effects must be addressed as frustration can often bring anger, not only to the patient but also the family.

We all know that individuals with PD are confronted not only with the physical manifestation of the disorder but with the psychosocial issues that impact on quality of life .So the Parkinson association of south Africa should have included a section on dealing with psychosocial issues . Parkinson association of south Africa have only focused on the physical manifestation of the disorder, they ignored psychosocial issues that impact on Quality of life .Psychosocial aspects of PD may present as subtle changes with progression of the disease .Many patients are reluctant to discuss these concern with health care providers, unfortunately , these unvoiced concerns have a negative effect on acceptance of the disease state , compliance with treatment , and response to therapy , and they can significantly affect quality of life .

The south African Parkinson association pamphlet has focused on management of mobility in PD and little attention has been devoted to psychosocial issues .This paucity of the south African Parkinson association pamphlet is attributed to the belief that if motor symptoms are treated , psychosocial aspects of the disease will spontaneously improve . Quality of life has been reported to be the primary concern of patients with PD and their families .So because of that we as a group we have decided to include a section on advice for caregivers .We included section on “Advice for caregivers ” in order to help the Parkinson association of south Africa and other caregivers to learn to recognize and accept quality of life as a major criterion in evaluation of health intervention . According to Gentile (1991, p652) “the concepts of quality of life goes the dimension of health functioning to performance of social roles , mental activity , emotional states , subjective well being and interrelationship . Life satisfaction , self-esteem and physical health have also been identified as key elements of quality of life .

The Pamphlet did not mention anything about drugs or therapy that can be used to control the disease. I agree with them that there is no a cure for the disease, but I think they should have said more. The pamphlet did not mention anything about the drugs that can be used. So as a group we have decided to include the names of the drugs. The South African Parkinson disease association should have mentioned drugs like Levedopa .

As a group we have decided to include the name .We took the fact that we are designing the pamphlet for the public into consideration and decided to define the drugs. Levedopa probably remains the most treatment for Parkinson’s , although recent evidence suggest that levedopa can be responsible for many long-term side in Parkinson’s. The pamphlet did not mention any side effects of using drugs .So as a group we decided to include information on side effects of using drugs .Short term effects are uncommon but include nausea , hallucination , tiredness and light – headedness . The long term effects of using the drugs include the development of abnormal excessive and involuntary movements called dyskinesia .

Secondly the south Africa Parkinson association included membership application form in the pamphlet .I think the membership form was not necessary . When people go to consult a doctor they don’t want to know about joining the organization , they want to know about the disease . So we decided to take out the membership application forms. I also believe that the application form damage self -esteem of the patients and caregivers . For example if a certain family has no money , this can damage their self-esteem . One may say that the south African Parkinson association promotes discrimination. The inclusion of the application forms also provide evidence that health is reserved for rich people . So we decided to eliminate the application form because of the fact that it deacrese self -esteem of poor people especially black people .

South African Parkinson association included the section aiming at increasing patients self-esteem, which I think most of the people with Parkinson disease need. They included a section stated you are not alone , the section was aimed at increasing patients self-esteem .However we as a group we have decided to eliminate the section and replace it with issues containing advices for caregivers .The reason for the inclusion of the section on advice for caregivers was because of the fact that Many people suffering from Parkinson’s disease live at home with the support of their family caring for them, caregivers play a vital role looking after those who are sick and vulnerable, whether it is for love, loyalty, friendship or support for others.

However caring can bring sleepless nights, physical effort and a feeling of being an intruder in someone else’s most intimate business. The impact on the caregivers of a person with Parkinson’s disease can often be as distressing as having the condition, the caregivers feeling isolated and frustrated. Caregivers may be so overwhelmed by the burden of care that they become unable to meet their own needs. This is when frustration increases and the caregivers can develop complicated feelings of love and resentment, feeling invisible and isolated themselves .

It is essential caregivers make more choices for themselves having more control over their own lives, for their own health and wellbeing. So as a group we have decided that it is not only patients that must be assessed but also the caregivers. Lastly the pamphlet sees the patient as helpless – so we included the section on what can I do to help myself – in order to inform patients that they also need to play a part in fighting the disease .

In truth, Parkinson’s disease may not be such a burden as we think. The treatments being prescribed is getting better with constant research into new routes and the ever going awareness of the disorder with many celebrities sufferers such as Michael J. Fox , Mohamed Ali aiding the causes. I do believe as do many people that soon we will find the real cause for this dreadful disease, thus finding a cure.

Awareness of the disease is vital as it could affect any person no matter what social standing, age, gender etc. you have. Unfortunately, there are still only a small amount of resources available. I think this is due in part that little is known still, however more is known than the past. This disease affects about 1% of the middle aged-elderly population, but currently gets a pitiful amount of funding compared to others. But we must remember, there is life after Parkinson’s; patients can and will carry on with their lives with a cure or not.

Parkinson affects many dimension of quality of life .This essay has identified motor and non motor features of PD that are directly related to patients quality of life. Medication therapy can help to ameliorate some of the symptoms, yet side- effects can be as disabling as the symptoms of PD. So I believe Care should include assessment , intervention and evaluation of both physical and psychosocial aspects of car for patients with PD to assist them in achieving maximum functioning .

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