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June - July 2009
What is Parkinsoní s disease?Parkinson’s disease is a progressive neurological condition that occurs when the cells in the brain that control movement are destroyed.
The PDS estimates there are around 120,000 people in the UK with the disease - that’s one in 500 of the general population - and approximately 10,000 people are diagnosed each year.
Parkinson’s disease is usually diagnosed after the age of 60, although one in 20 will be under 40 at the time of diagnosis.
Parkinson’s is caused by the loss of brain cells that produce dopamine, which enables us to perform fluid and coordinated movements. A person with Parkinson’s will have symptoms of the disease once 80% of these cells are lost. The reason why this happens is not known, though most researchers believe Parkinson’s is likely to be caused by a combination of factors including environmental issues and genetic susceptibility.
Because Parkinson’s attacks the part of the brain that controls our movements, it affects activities we take for granted such as talking, walking, swallowing and writing. There are 3 main symptoms – tremor, slowness of movement and muscle stiffness, but not everybody will experience all three. Other symptoms may include sleep difficulties, bladder and bowel problems, depression, anxiety, excessive sweating, changes to sense, smell and taste, anxiety and memory loss. Well known people with Parkinson’s include former boxing world champion Muhammad Ali and actor Michael J Fox.
Living with Parkinson’s disease
There is no cure for Parkinson’s disease, but a lot can be done to relieve symptoms, especially in the early stages. The aim is to replace the missing dopamine in the brain.
The ‘gold standard’ treatment for Parkinson’s is a drug called levodopa- a natural amino acid that the brain converts into dopamine. Levodopa is normally very effective when it is first used, but over time some people may begin to experience fluctuations in the way levodopa controls their symptoms. People may find their symptoms become noticeably worse before their next dose is due, called “wearing off”. There are other drugs that can be given to make Levodopa more effective.
There are also a number of other drugs also used for treating Parkinson’s. One type of these drugs is dopamine agonists which mimic the effect of dopamine. As with all Parkinson’s medications these drugs can have side effects and doses have to be carefully tailored to individual needs. One problem that affects small numbers of people taking Parkinson’s drugs is the development of compulsive behaviours and people taking drugs should look out for behavioural changes.
Another option for people with more advanced Parkinson’s is injections of apomorphine to ‘rescue’ people from sudden ‘off’ periods when they are virtually immobile. This means that a person’s dose of levodopa can be reduced.
Caring for people with Parkinson’s
When someone is newly diagnosed with Parkinson’s, a team of healthcare professionals provide support and advice tailored to individual needs. For example, occupational therapists and physiotherapists can help people with Parkinson’s manage their condition by assisting with movement, and providing advice on how to maintain independence in all aspects of every day life. Speech and language therapists can also help those with communication or swallowing difficulties. A Parkinson’s Disease Nurse Specialist (PDNS) can provide information on the condition, and provide regular medication and clinical reviews.
Support from the Parkinson’s Disease Society
The Parkinson’s Disease Society provides support, advice and information to people with Parkinson’s, their carers and families, as well as funding essential research into the cause, cure and prevention of the disease.
The PDS has a team of staff dedicated to supporting the needs of people with Parkinson’s throughout the UK. Their work includes providing specialised training to local healthcare professionals, assessing local services, and providing one-to-one support on all aspects of living with Parkinson’s.
The PDS also has a strong network of more than 330 branches and support groups, also positioned across the UK, which offer people with Parkinson’s and their families a place they can go for information, to share experiences with others and to take part in a range of social activities.
These branches are run by dedicated volunteers, many of whom are living with Parkinson’s themselves.
For more information about Parkinson’s and the PDS visit the official PDS website at www.parkinsons.org.uk or contact the confidential freephone Helpline, which is staffed by registered nurses and specialist advisors, on 0808 800 0303.
Our 40th Anniversary
This year marks the 40th Anniversary of the Parkinson’s Disease Society (PDS). The PDS works to ensure everyone affected by Parkinson’s and across the UK has access to the support, advice and information they need.
Parkinson’s disease is a fluctuating, progressive condition that affects every aspect of a person’s life and that of their loved ones. Those living with the condition should have access to the support, advice and information they need to allow them to lead a full a life as possible.
The PDS has come a long way in the last four decades as a charitable organisation. We campaign for a better quality of life for people with Parkinson’s and provide expert information on all aspects of living with the condition. We are the 11th biggest funder of medical research in the UK and have invested over £40 million in research into Parkinson’s since 1969.
But there is much more to be done. Research has come closer to discovering a cure in the last decade than ever before and the PDS is investing in the next generation on experts in the hope that they make a breakthrough.
We also need to make sure every single person diagnosed each year doesn’t feel alone. The PDS is entirely dependent on voluntary donations to carry out its work, so if you can, please help us. Together we can make a real difference to the lives of those affected by Parkinson’s.
Throughout the year, people across the county will be pulling out all the stops to organise events to mark this landmark year and to raise vital funds for the charity’s future work.
To find out more about how you can get involved, visit www.parkinsons.org.uk