Medication needs to be carefully monitored and adjusted over time by a specialist. Over-medication may produce unwanted side effects, but under-medication can mean that symptoms are not well controlled. So, there is a delicate balance to be found between symptom control and quality of life.
The key to medication is a personalised approach to achieve a sensible balance that suits you. As with all aspects of care, your personal opinions and feelings are critical in achieving the best results; whilst a doctor may have his or her own view on what is most beneficial, they should explain clearly the choices and likely outcomes so that you can make an informed and personal decision.
Physiotherapy aims to improve quality of life and promote independence when living with Parkinson's. It can be particularly helpful in palliative care by:
- maintaining movement, flexibility and strength
- helping you find comfortable positions when lying in bed or sitting
- advising on and providing walking aids to help you maintain as much independence as possible
- advising on breathing
- assessing and treating pain
- advising on strategies for managing daily activities and conserving energy
- teaching techniques to aid relaxation
- advising carers on safe lifting and turning to avoid injury.
Occupational therapy aims to maintain as much independence as possible in daily life, including personal care (such as washing and dressing) and social activities. An occupational therapist will provide advice on techniques and specialist equipment to help overcome difficulties you encounter in everyday activities, as well as liaising with others who can help you.
Depending on where you live, some of the help provided by an occupational therapist may be provided by a physiotherapist, and vice versa. For more information see occupational therapy and physiotherapy.
Speech and language therapy
Speech and language therapy can help with communication difficulties, drooling, swallowing and eating, and advising on equipment such as voice amplifiers if your voice is very soft.
If verbal communication becomes impossible, a speech and language therapist can advise on alternative means of communication, including alphabet charts and electronic communication aids such as Lightwriters (a small handheld computer), and computers with speech synthesisers. They can also advise on artificial tube feeding methods, such as nasogastric tubes or percutaneous endoscopic gastrostomy (PEG), if you have extreme swallowing difficulties. See Artificial feeding for more information.
For more information see Speech and language therapy.
Complementary therapies are non-conventional treatments, for example massage, aromatherapy, reflexology, spiritual healing, acupuncture and meditation. They generally take a holistic approach (treating both mind and body) which makes them appealing to many people in the later stages of life.
Although few of the therapies have undergone rigorous scientific research and even fewer are formally regulated, advocates suggest that they can enhance quality of life by providing a sense of relaxation and calm which can in turn reduce distress, anxiety and depression. Some complementary therapies can also help overcome physical symptoms such as pain, insomnia and nausea.
For more information on see Complementary therapies.
Whilst the physical needs of an illness may sometimes be the most obvious, the psychological, emotional and spiritual needs are equally important. An essential part of successful palliative care is recognising and supporting these needs to help promote a sense of calm about the present and the future.
Usually a psychologist will assess your mood and wellbeing and identify factors that impact on these. They will explore existing coping mechanisms and can help you develop further strategies. They also play a crucial role identifying carer needs and offering them support too.
The availability of psychological support services varies in different places and in many instances they are accessed through referral to a psychiatrist.
Diet and nutritional support
Nutrition is an essential part of care but it may become difficult in the late stages of Parkinson’s. This can be particularly worrying to carers as food intake is often used as a ‘health barometer’ and reduced intake can be a concern when trying to provide the best possible care.
Poor nutrition can affect your wellbeing and quality of life considerably, so it is important to get professional advice from a dietician sooner rather than later so that any nutrition support plans can be put in place in plenty of time. It is also important to have ongoing access to a dietician so that your diet can be monitored and care plans adjusted as necessary.
If eating and drinking become too difficult or are no longer possible, artificial feeding via a tube may be suggested in certain situations.