Parkinson's disease: managing problems as it advances
As Parkinson's progresses, issues of management become more complex. There is a need to maintain independence, control the symptoms and manage difficulties relating to long-term effects of both the treatment and the condition itself. Quality of life can depend on the recognition and treatment of some of the hidden problems as much as the treatment of the movement abnormalities.
Maintaining independence
Education
Education can help give the person with Parkinson's a sense of control and, in particular, education about the non-medical management can assist in managing a condition that is essentially progressive. The person who is well informed is the best advocate for good care and management. Information needs to be reputable. There are a number of reputable Internet sites and local Parkinson's associations have a range of printed and video information.
Support
Many people living with a condition such as Parkinson's feel isolated and, particularly as the symptoms become more obvious, many people withdraw from social contact. Parkinson's support groups provide mutual support from people in a similar situation. Support from the family is important and where this is not possible, or where the Parkinson's person lives alone, there are ways of accessing community-based support services. For the person at risk of institutional care, there are programmes designed to help people stay at home and independent as long as possible.
Exercise
Although exercise may not halt the progression of Parkinson's, it improves quality of life and directly affects symptoms such as stiffness and slowness of movement, as well as improving levels of fitness and a sense of well-being. Exercise programmes, either specifically designed for Parkinson's, or in a community setting can be helpful and assessment by a physiotherapist with a special interest in Parkinson's can provide a guide to appropriate exercise. For those people with fatigue, physiotherapists can also teach energy conservation techniques. Walking is still one of the best exercises, so perhaps walking the dog can help with mobility and also reduce social isolation.
Nutrition
Many people with Parkinson's lose weight as the condition progresses and it is important to have a diet that is balanced, maintains weight, is easy to eat (particularly if there are problems with swallowing or eating slowly), helps prevent constipation and contains plenty of fluids. It is often helpful to consult a dietitian for advice in planning an appropriate diet. There can also be a need to plan to eat the meal with the most protein at the time of day when it does not matter if the response to medication is a little slow. Alternatively, levodopa taken an hour before food is more rapidly absorbed.
Speech
Speech is often affected in Parkinson's, and this, together with the lack of facial mobility common in Parkinson's, can make communication difficult. Speech pathologists can teach methods of using the voice better and simple techniques such as 'think loud' have proven to be helpful.
Maintaining self care
As people with Parkinson's slow down, it is important to develop strategies to maintain independence and dignity. Carers can usually do things more quickly than the Parkinson's person and often help when there are other ways of tackling a problem. There are a number of strategies that recognise the difficulties many Parkinson's people have with complex actions. The concepts of 'one thing at a time' and of having and using cues can be learnt and adapted to many daily activities.
Home modifications
Modifications to the house can reduce the burden on carers and help the person with Parkinson's maintain independence and keep mobile. Rails in the bathroom and by steps, as well as other home modifications can be recommended by an occupational therapist and can often be provided as part of a government funded service.
Caring for carers
There is an increasing recognition of the role of the carer in Parkinson's and also of the needs of carers as distinct from those of the person with Parkinson's.
Education
The carer who is educated about Parkinson's is best able to make plans and manage life and act as an advocate for their partner if needed.
Support
It is easy for Parkinson's to take over the whole family life and carers need to make sure they have a life of their own. Carer support groups and Parkinson's groups where carers can meet together and provide mutual support are invaluable. Counselling is also available from most Parkinson's associations.
Stress management
Many carers have difficulties coping and feel trapped in a role they did not seek. Lack of sleep, social isolation and the physical demands of caring for someone all create stress. There are techniques to manage stress and most Parkinson's associations will be able to provide this information.
Respite
The person with Parkinson's cannot escape their condition and carers often feel guilty for getting away from time to time. It is, however, important for the carer, as the support person, to keep their own health and maintain a sense of balance.
Falls
As Parkinson's advances, falls tend to occur more often and there may be a number of different mechanisms involved which make people more likely to fall.
Freezing
Freezing, or feeling stuck and unable to start moving, is one of the most frustrating aspects of Parkinson's. There are many 'tricks' people use to overcome this, such as stepping over an imaginary object, rocking, and using music. Each person needs to work out what is best for them and Parkinson's associations and physiotherapists can provide helpful information.
Postural instability
Falls caused by postural instability usually occur when the person is turning while walking or making other changes in position. Physiotherapists can provide training in techniques to help prevent this type of falling.
Toppling
This usually occurs only in late stage Parkinson's and is related to postural instability or gait problems. If it occurs early in the course of Parkinson's, the reason needs to be carefully assessed by a doctor, as there could be other causes.
Environmental causes
Physiotherapy or occupational therapy assessment can be important when a person is falling. Scatter rugs, inappropriate shoes, poor lighting, walking sticks and slippery floors are some of many possible environmental factors which may need to be modified.
Medical causes
Not all falls are caused by Parkinson's and the person who is falling needs to be assessed, so that other causes can be investigated.
Movement complications
After a person has been taking medication, particularly levodopa (e.g. Sinemet or Madopar) for some time, complications can occur and they can be very difficult to manage. The 2 major complications are motor (movement) fluctuations and dyskinesias (usually twisting movements). Careful medical management of these complications is most important.
Fluctuations
Fluctuations occur when the response to medication alternates between 'on' (symptoms are well controlled) and 'off' (usually rigid and very parkinsonian). With advances in medication for Parkinson's, there are now a variety of strategies used to help combat this problem and it is important to be treated by a doctor who has particular expertise in managing complications associated with Parkinson's.
Dyskinesias
Dyskinesias are most often associated with peak dose, or the time after taking medication when the level in the body is highest. Dyskinesia is usually associated with 'on' stages but can occur during 'off' periods. Once again, careful medical management is important.
Psychological problems
It was once thought that Parkinson's only involved movement but it is now recognised that there are a number of disturbances of mood and thinking that can be associated with Parkinson's.
Cognitive difficulties
Difficulties in thinking can be a significant cause of disability in Parkinson's. These include slowness of thinking and information processing as well as disruptions to the planning thought processes. These changes are often related to the Parkinson's medication and it can be difficult to achieve a balance between managing Parkinson's symptoms and minimising the unwanted effects on thinking processes. Techniques to overcome some of the difficulties, particularly with organising and planning, can be taught and can be effective in reducing some of the frustrations.
Dementia and hallucinations
Parkinson's disease can itself cause hallucinations, confusion, memory loss and agitation but these problems may also be related to anti-Parkinson's medication or be caused by another condition entirely. The management of these problems therefore needs careful assessment before any treatment is started.
Depression
Depression is common in Parkinson's, with most researchers agreeing that about 40 per cent of people with Parkinson's have problems with depression at some stage. Depression may be a part of the disease itself, as people with Parkinson's have higher levels of depression than people with similar levels of disability from other causes. Levels of depression are not related to the severity of Parkinson's symptoms and may even precede diagnosis. Levels of depression tend to be higher just after diagnosis and in the late stages of the condition, indicating that depression can sometimes be a reaction to having Parkinson's and some of the difficulties it creates.
Managing depression depends on the cause and depression needs careful assessment before treatment. People with Parkinson's can look depressed because of their posture and lack of facial expression, or may be diagnosed as depressed if they are experiencing lack of energy, sleep problems or loss of appetite. Some people with Parkinson's suffer from a combination of apathy, decreased energy and passivity similar to depression but it does not respond to antidepressants.
Sleep difficulties
Insomnia
Sleep difficulties are common in Parkinson's and may be linked to a number of factors such as Parkinson's itself, depression, pain, sleeping during the day, dyskinesia and Parkinson's medications.
Medication can be used and there are a number of other strategies that people have found helpful. These include plenty of bright light during the day, regular exercise, regular bed time and rising time, using the bed only for sleeping and not for reading or watching TV, and avoiding alcohol or coffee before bed.
Restless legs
Restless legs syndrome is common in Parkinson's and most commonly occurs at night, with feelings of discomfort, cramps or aching in the legs and a feeling of being unable to sit still. Walking around, exercising, warmth or stretching can all help, but because there could be a number of different causes, treatment can be complicated.
Autonomic system disturbances
The autonomic nervous system controls involuntary movements and difficulties are common.
Constipation
Constipation is common, as the bowel is muscular and affected by Parkinson's. Management of constipation is primarily with high fibre diet, plenty of water, and as much exercise as possible. Laxatives and biofeedback techniques may also be useful and advice from a dietitian or doctor is important.
Continence
Urinary problems, particularly at night, can be frustrating and disruptive to the person with Parkinson's and the carer. They may be related to weakened muscles, slowness in getting to the toilet, lack of manual dexterity or a number of other issues. Continence advisory services are provided by a number of agencies and can provide management advice at home on an ongoing basis. Parkinson's associations have information on accessing these services.
Sexual difficulties
Sexual difficulties are usually related to loss of interest and difficulty in sexual functioning, and can relate to medication or disturbances of the autonomic nervous system. For men, difficulties usually relate to the inability to maintain an erection. Sometimes medication can cause an increase in sexual function. Treatment with medication can be effective whether the problem is caused by medication or possibly by depression. Lessening agility, lack of self esteem, relationship difficulties and changes in roles within a couple can also cause problems with both the Parkinson's person and the carer. Counselling may be needed to deal with these problems, either through the local Parkinson's association or agencies such as Relationships Australia.
Pain
Although pain is experienced by about half of people with Parkinson's, there is no single or simple cause. Some pain can be managed by changing medication but the cause needs to be investigated and other non-Parkinson's causes of pain treated.
Postural hypotension
A lowering of the blood pressure when standing can cause feelings of light-headedness. There are a number of approaches to dealing with this and medical advice should be sought to find out the exact cause. Approaches to management include medication, avoiding large meals, being careful in hot weather (and avoiding playing wind instruments when standing up!).
Thermo-regulation and sweating
These are problems which can be associated with Parkinson's disease but may also be caused by other conditions. Because the mechanisms for temperature regulation and sweating are complex and their disturbance in Parkinson's disease is not well understood, management can be difficult.
Oily skin and slow blinking
Oily skin usually occurs around the head, face and neck and is normally managed by using a coal tar shampoo.
Inflammation of the eyelids relating to slow blinking can be treated with use of natural tears and warm compresses. Other approaches may be needed if simple remedies do not work.
References:
1. C.W. Olanow, W.C.Koller. 'An algorithm (decision tree) for the management of Parkinson's disease: treatment guidelines.' Lippencott Raven 1998. Supplement to Neurology, Vol 50 No 3.
2. D.G. McMahon. 'Pathways. A paradigm for disease management in Parkinson's disease.'Journal of Neurology (1998) Suppl 1. PpS 19-S22.
3. EPDA Conference, Barcelona 1998. Book of abstracts.
G. Coremans. 'Parkinson's: The Bowel.'
F. Marti. 'Parkinson's Disease in relation to Libido/Potency.'
S. Roy. 'The Genito-Urinary System.'
Last Reviewed: 24 July 2002
