10 Parkinson’s Disease facts
This is an article that describes 10 facts about Parkinson’s Disease.
1. What is Parkinson’s Disease?
Parkinson’s disease is caused by a loss of nerve cells in part of the brain called the substantia nigra. This leads to a reduction in a chemical called dopamine in the brain. The cause is unclear. It does not usually runs in families.
2. How common is Parkinson’s Disease (PD)?
It is common in older people, affecting 2% of the over 80s, men more than women. The average age at which it starts is 60 years old. The main symptoms of Parkinson’s disease are shaking (tremor), slow movement and stiffness.
3. What is the treatment for PD?
The main treatment is a drug called levodopa, which replaces dopamine. There is currently no cure. Here are some tips to get better care.
4. Does it matter when i take my tablets?
Yes, a lot. It is important to take the PD medication at the correct times, which may eventually be quite often. See below on the ‘on-off effect’ for an explanation.
5. What about other mental problems?
There is a lot of overlap between PD and both depression and dementia. This is partly as the symptoms can be similar. For example, PD can affect your memory (like dementia). And all of the problems can make you fed up and depressed. So it is important that your GP and specialist focuses on (and treats) all three. Ask them.
6. Who should I see for my PD?
- GP. Many patients can be looked after by an NHS GP alone. But if things are not settling you should be referred to a hospital neurology (brain) consultant.
- Hospital neurology consultant. Ask your GP to refer you to the local hospital neurology unit (there will be one). Then when you see a consultant (or their deputy, called a registrar) who specialises in brain disease, only let them discharge you when you feel the Parkinson’s is stable. In the meantime, ask for review every 3-6 months – this can be virtual. They can also get you to see a hospital (or community based) PD specialist nurse. Many neurology doctors subspecialise, e.g. PD, epilepsy and multiple sclerosis. Make sure you are under the care of the right one. Ask them.
- Charity. Contact a major patient charity, and join the local branch of that charity. Parkinson’s UK is an important one.
7. Can a GP Practice Nurse help?
Yes. Many GPs have a practice nurse that runs a ‘long-term condition’ clinic (that includes CCF, IHD, high blood pressure, COPD, diabetes and chronic kidney disease, CKD) on their own. Ask for three monthly review there. Some of them work with a clinical pharmacist who can fulfil a similar role.
8. What about new treatments and monitoring equipment?
Talk to the above health professionals about these. Neurology care is changing all the time, with new drugs, operations, procedures and electrical treatments appearing.
9. What lifestyle changes should I make?
It is a good idea not to smoke, keep trim, exercise and keep your alcohol consumption down. If you are overweight here is MyHSNs advice on weight loss.
10. What is the ‘On-off Effect’?
- When the drug levodopa begins to take effect, you experience periods of good symptom control (‘on’ time), when you can move and function well. As levodopa begins to lose its effect (‘wearing off’), you may have periods in which symptoms are suddenly much more noticeable and movement becomes more difficult (‘off’ time)
- Usually, when you first develop wearing off, the switch from ‘on’ to ‘off’ happens gradually. ‘Off’ periods initially are predictable and occur near the end of each medication dose. For example, when they first begin treatment, many people are placed on levodopa three times a day
- Early on, the medication lasts dose to dose, but over time the medication may begin to wear off 30 minutes to an hour before the next dose. At this point, you notice a gradual return of symptoms
- As Parkinson’s progresses, levodopa stays effective for shorter periods of time. This means you have to take more frequent doses, and ‘off’ episodes may become more sudden and/or unpredictable.
Yes, it is confusing there are so many terms that relate to brain disease and PD – e.g. neurology, neurologist, Parkinson’s Disease and Parkinson’s Syndrome.
Summary
We have described 10 Parkinson’s Disease facts. There is a lot you and the NHS can do to get better care. If you do all of this, you will get better care – and your Parkinson’s Disease will improve.
Last Reviewed on 7 March 2024