Parkinson’s disease and parkinsonism

Understanding the two terms

Parkinson’s disease is a condition affecting the brain that develops over time. Its pace and effects vary. Parkinsonism describes a group of symptoms, including slowed movement and stiffness, sometimes with shaking called a tremor. Parkinson’s disease is the most common cause. Other causes include changes to the brain’s blood supply, some medicines and other neurological conditions. These conditions do not all follow the same course or respond to the same treatment. Neither term means a learning disability, although a person can have both.

More than movement symptoms

Parkinson’s may affect walking, balance, handwriting or facial expression. It can also involve tiredness, constipation, sleep problems, dizziness on standing, pain, anxiety or low mood. Some people have changes in thinking or memory. Speech and swallowing can be affected too. The combination and severity vary; not everyone has a tremor or develops every symptom. Tell the team about effects that others cannot see as well as movement difficulties.

Finding the cause

See a GP about new tremor, stiffness, slower movement or unexplained changes. If Parkinson’s is suspected, you should be referred to a specialist. Diagnosis uses your symptoms, medical history and examination; scans may sometimes help assess other causes. There is no single routine test that confirms every case. Take an up-to-date medicine list, including medicines for other conditions. If medicine-related parkinsonism is suspected, the prescriber must review it. Do not stop prescribed medicines yourself.

Treatment and regular review

There is currently no cure for Parkinson’s disease, but medicines and therapies can help symptoms. Some people may be considered for specialist procedures. Treatment for other forms of parkinsonism depends on the cause. Discuss what matters to you, expected benefits and possible side effects. Your team should review your diagnosis and treatment as needs change. A Parkinson’s nurse may help coordinate support. Ask for a clear care plan and contact details for advice.

Medicines must be given on time

Parkinson’s medicines can be time critical: delays can seriously worsen symptoms. Follow your exact prescribed doses and times. Do not suddenly stop treatment or change the schedule yourself. In hospital or a care home, show staff your current medicine list and timings; ordinary medicine rounds may not match your prescription. Ask who will make sure each dose is available and given on time. If you cannot swallow, are vomiting or are told not to eat or drink, ask staff or your clinical team immediately for a safe medicine plan.

Movement, eating and communication support

A physiotherapist can help with movement and balance. An occupational therapist can suggest equipment or changes to daily tasks. A speech and language therapist can assess communication and swallowing, and a dietitian can advise about nutrition. Report coughing during meals, swallowing difficulty or weight loss. Follow an individual swallowing plan; do not change food textures or crush tablets without advice. Allow time to respond and offer communication aids if helpful. A quiet voice or reduced facial expression does not tell you what someone understands.

Notice side effects and changes

Tell your specialist promptly about seeing or hearing things others do not, excessive sleepiness or new strong urges to gamble, spend money or seek sexual activity. These can sometimes relate to Parkinson’s medicines and deserve assessment without blame. Other health problems can also cause changes. Do not alter medicines yourself: the team must balance symptoms and side effects safely. If you also have a learning disability, supporters should notice changes from your usual abilities and behaviour rather than dismissing them.

Agree support and emergency plans

Keep a record of what helps, important medicine times and how you communicate. Ask for accessible information and involve people you choose in planning. Care needs can vary during the day, so explain when extra help is needed. A new problem should not automatically be put down to Parkinson’s. Call 999 for sudden face drooping, arm weakness or speech difficulty, which may be a stroke. Keep your specialist’s contact details available for other changes or medicine concerns.

Parkinson’s and parkinsonism