You, your partner, carer and family are key members of your care team and you may want to – and be encouraged to - take an active role in decisions regarding your treatment and care. Remember, you are the expert in how you feel and manage your life with Parkinson’s, and the information you provide is essential for your care team to tailor treatment to suit your specific needs.
You will need to be honest about how symptoms affect your daily life and what help you feel you need in order to maintain your independence and quality of life. Your care team will then be able to provide accurate and objective information about the choices available and their potential advantages and disadvantages. Being aware of the various options will allow you to have a meaningful discussion with your care team and will help you to ask relevant questions, weigh up the options and decide which might suit you best. Engaging in this way also means that you are more likely to follow the jointly agreed treatment plan which should lead to improved well-being and health. Feeling in control of your treatment can have psychological benefits.
Over recent years the term ‘patient centred care’ has become widely used to reflect the fact that patients are more involved in their treatment. ParkinsonNet is a Dutch model of patient-centred care that has gained international recognition and is widely regarded as the 'gold standard' in Parkinson's care. The aim of ParkinsonNet is to implement Parkinson’s therapy guidelines and provide an integrated support network that enables communication between healthcare professionals and people with Parkinson's, as well as between healthcare professionals themselves. This model is now being adopted by other countries.
It is now generally accepted that the best possible care will involve a multidisciplinary team (MDT), a group of specially-trained professionals who each have their own area of expertise and work together to treat your symptoms, both physical and emotional. The care these experts can provide complements the standard medical treatments your doctor will prescribe.
Importantly, the team will involve you, as well as your carer, family and friends as they play a vital role in supporting your daily activities.
The professionals in your team may vary depending on where you live and they are likely to alter as your Parkinson’s progresses. Professional titles may vary between countries, too. For example, a Parkinson’s specialist can also be known as a neurologist, a movement disorder specialist, or a Doctor with a Special Interest in Parkinson's. They are there to support you in whatever way you require, and will endeavour to build a good relationship with you so that you feel comfortable discussing any problems you may have.
The ultimate aim of the MDT is to minimise the impact Parkinson's has on your daily activities. By taking an active role in the team, you can work together to improve aspects of your life that are important to you.
Primary care physician (sometimes called a General Practitioner/GP)
A doctor who is generally the first point of contact for any illness or complaint.
Specialist Doctor (who may have a different name depending on which country you live in)
- Doctor with a special interest in Parkinson’s - you may be referred to a doctor who treats many conditions, but who specialises in managing Parkinson’s.
- Neurologist - a doctor trained to diagnose, treat and manage people with neurological disorders (disorders of the nervous system) such as Parkinson’s and Alzheimer's disease.
- Movement Disorder Specialist - these are neurologists who have chosen to specialise in movement disorders, Parkinson’s being a good example.
In some countries, there may be a Parkinson’s Disease Nurse Specialist (PDNS) who can act as a ‘bridge’ between you and your doctor, answering queries or referring you to other professionals within the MDT. They may also take the lead in organising and coordinating the MDT. Nurses who have been specially trained in Parkinson’s may be closely involved in several aspects of your care, such as medication and providing information and advice to help you.
Physiotherapists are trained to keep you moving and functioning as well as possible. They can help with improving mobility, exercises, movement strategies (for example, getting out of a chair or turning in bed safely), and overcoming side effects of medication, including ‘on’ and ‘off’ phases. They use techniques such as exercise, heat treatments, manipulation and hydrotherapy to improve problems and can also assist with pain relief using special equipment and massage.
Often called physios, physiotherapists work in care homes, doctors’ surgeries and in people’s own homes as well as hospitals and outpatient clinics. Seeing a physiotherapist can benefit both you and your carer.
For more information see Physiotherapy.
Occupational therapists (OT) are trained to help you adapt to life with Parkinson’s, enabling you to maintain independence and quality of life at home, at work and through leisure pursuits. They can suggest practical aids to reduce barriers that limit your ability to carry out daily activities such as dressing, eating, writing, using a computer, walking, getting in and out of a bed or bath, and using stairs. They can also suggest ways to adapt your routine and surroundings, ensuring that your environment is safe and user-friendly. This can also help to relieve pressure on families, friends and carers.
For more information see Occupational therapy.
Speech and language therapist
Parkinson’s can affect speech, facial muscles and body language. Speech and language therapists can help you communicate to the best of your ability by assessing and treating any speech, language or communication problems. They can also help with eating, swallowing and drooling problems. They are based in both hospital and community settings.
Speech and language therapists can help by:
- providing exercises to improve communication on a one-to-one basis, or in a group
- advising on specific communication difficulties
- suggesting techniques to improve breathing or posture to facilitate better voice and communication
- offering tips and strategies to make particular activities easier, such as talking on the telephone
- recommending special tools and equipment to aid communication
- assessing and treating difficulties with eating, drooling and swallowing
- advising carers
For more information see Speech and language therapy.
Parkinson’s does not require a specific diet, but you should eat a well-balanced and healthy diet to maintain good health. Dieticians and nutritional therapists advise on a healthy diet and specific dietary needs, including advice on maintaining a healthy body weight. They can offer advice on how to improve nutritional intake by eating energy-rich foods, the use of nutritional supplements and how diet can ease symptoms such as constipation. They may also liaise with a speech and language therapist about swallowing and eating difficulties.
For detailed information on diet and nutrition in Parkinson’s see Eating well.
Pharmacists are qualified to prepare and dispense medicines, and to offer advice on prescribed medications. They can ensure that over-the-counter medications and vitamin supplements do not interfere with prescribed drugs. A pharmacist may also advise you regarding treatment concordance, that is, taking the right medication in the right dose at the right time.
If you have any queries or concerns about possible side effects of medication your pharmacist should be able to help. However, as getting the right balance of Parkinson’s medications for each person is complicated, pharmacists will not generally be involved in adjusting or altering your medication – this is something for you to discuss with your doctor.
Sex therapist (or sexologist)
Sex therapists are trained to provide advice and counselling on all aspects of sexual health and can advise if you and your partner have concerns about intimacy.
For more information see Intimacy, sex and sensuality.
These trained specialists can talk with you and your family about emotional and personal matters, including helping you overcome emotional or psychological reactions to having Parkinson’s or other aspects of life that are challenging. They may also carry out memory tests to help clarify the degree of any cognitive difficulties.
A psychiatrist is a medical doctor (MD) who specialises in treating mental health issues and disorders, such as anxiety, depression, and disturbances in thinking and perception. They evaluate a person’s mental health along with his or her physical health and can prescribe medications to treat mental and emotional disturbances.
Social workers are trained to help with the social, emotional and financial needs of you, your carer and family. In some countries, state-funded social support may be available and a social worker will be able to help you access available services and any appropriate benefits.
A continence advisor is a specialist nurse who can help with continence problems, that is controlling the bowel and bladder movements and their timing.
A podiatrist/chiropodist diagnoses and treats disorders of the feet and advises on the most appropriate footwear to cope with walking problems, such as falls and freezing.
Your first point of contact should be your doctor or, in some countries, a Parkinson’s Disease Nurse Specialist.
Referral procedures depend on where you live and treatment may or may not be accessible through your national health system. If treatment is not state-funded, you can also book an appointment on a private basis – this means you have to pay for any treatment and assessment you receive.
Make sure you prepare for each appointment so that the limited time available is used efficiently. Take notes so you can refer to them later.
See also Appointments with your healthcare team and Keeping a diary.
Professionals working within European state health systems, such as the UK’s National Health Service (NHS), will be properly trained and registered with their country’s regulatory body for their profession. In most countries, you can also see them privately at your own expense but it is important to make sure they are properly qualified. Your national Parkinson’s association may be able to advise further on accessing professionals where you live.