a brighter future for Parkinson's disease?

David Beresford likens his condition to a war between his body and his brain. He has Parkinson's disease - and he's fighting back.

image to accompany feature
© C4

David has made the difficult decision to undergo deep brain stimulation. This procedure is risky and invasive - but it could free him from some of the more debilitating symptoms of this degenerative disease.

what is PD?

Parkinson's disease involves the gradual deterioration of the part of the brain that makes dopamine. This disrupts nerve pathways, so people can no longer control normal movements. The cause isn't known but the disease rarely starts before the age of 40 and is more common in older people. Nerve tests and scans help to confirm a person's symptoms are PD and rule out other possible conditions. In the UK about 120,000 people have the condition.

what are the symptoms?

A tremor in the fingers or hand is often the first visible symptom of Parkinson's disease and it may progress to the legs, jaw, tongue and forehead. As the condition gets worse, movement may become jerky and limbs rigid. People tend to shuffle when they walk and cannot swing their arms. They may be unable to frown, smile or make other facial expressions and speaking can become difficult. As a result, people with PD can feel frustrated, misunderstood and depressed. When they've had the disease for some time, they may become confused and have trouble remembering things.

drug treatments

There is no cure for Parkinson's disease, but a lot can be done to relieve symptoms, especially early on. The aim is to replace the missing dopamine in the brain. This can be done with a drug called levodopa – a synthetic chemical which is converted into dopamine in the brain. Levodopa is most effective at relieving rigid limbs and slow movements and, at first, it is very effective.

The main drawback of levodopa is its side effects. Nausea and a drop in blood pressure can be relieved with other drugs, but abnormal involuntary movements, including facial and other muscle spasms, are harder to deal with. After a few years of treatment, over half of people with PD who are treated with levodopa fluctuate in how they respond to the drug – the so-called 'on-off' effect. One minute symptoms are well controlled but the next, people can hardly move. The longer people take levodopa, the shorter the beneficial effects after each dose.

Because of these problems, doctors usually try to delay using levodopa, especially in younger people. Instead, they use other drugs that boost dopamine activity or mimic its effects. These drugs include selegiline that blocks the breakdown of dopamine in the brain, or bromocriptine, pramipexole, ropinirole and pergolide which all work like dopamine. These drugs also have side effects and doses have to be carefully tailored to individual needs.

Another option is injections of apomorphine to 'rescue' people from sudden 'off' periods or as a continuous infusion for those with severe movement fluctuations. This means that a person's dose of levodopa can be reduced.

GDNF

British neuroscientists are following the remarkable responses of a handful of patients given a protein that reactivates essential brain cells destroyed by Parkinson's.

They have measured a significant rise in dopamine - the nerve transmitter that is lost in PD. This means big improvements in movement and everyday living for the five people being treated with glial cell line-derived neurotrophic factor (GDNF). The protein is dripped directly into their brain through a small tube connected to a tiny pump in their abdomen. No one knows the long-term effects of the treatment and the research team is cautious. There have been too many false hopes for Parkinson's treatment in the past but there is no doubting the excitement.

'More research and multi-centres trials need to be undertaken and we look forward to seeing the results of larger scale trials in the future,' says Linda Kelly, chief executive of the Parkinson's Disease Society.

surgical options

Transplantation of embryonic brain cells and electrical brain stimulation are among the surgical techniques that continue to be researched. Early work transplanting embryonic dopamine-producing cells into the brains of people with PD gave promising results in younger patients. But ethical concerns have limited use of the technique and may restrict stem cell research too. (You can find out more about stem cell research and gene therapy, including the moral arguments facing regulators and scientists, in the feature the ethics of cloning for a cure on our science in medicine site.)

deep brain stimulation

Deep brain stimulation – the procedure chosen by David which was documented in Channel 4's The Battle With My Brain – is a treatment being pioneered by doctors in Grenoble, France. It entails a gruelling series of operations where a patient has electrodes placed deep inside his or her brain. This is made more harrowing by the fact that, while the electrodes are implanted, the patient must be conscious.

If successful, deep brain stimulation means someone like David won't have to take levodopa or suffer its side effects again. Despite the intensity of the procedure, and the fact nobody really knows why it works, it is proving to be incredibly effective for many people with the condition, relieving the tremors associated with PD. The procedure doesn't work for everyone, however, especially those who don't respond well to levodopa in the first place - and it isn't a cure for the disease.

As with transplants, GDNF and other experimental treatments for PD, deep brain stimulation is only available at a few centres.

good support

PD specialists stress that treatments should be used as part of a coordinated plan of physio-, occupational and other therapies aimed at minimising the disability of the disease. Exercise can help strengthen muscles and relax rigid limbs as well as enabling people to walk more smoothly and confidently. Speech therapy can help with communication difficulties. Depression, anger and frustration are natural reactions to increasing disability but may be helped by talking to counsellors or other trained therapists.

A diagnosis of PD does not mean an immediate and irreversible decline into disability. Some people progress more quickly than others but, as the disease is most common in the elderly, it may not affect life expectancy. If disability is starting to limit work opportunities, disability employment advisors, such as those at the Parkinson's Disease Society, can advise about adapting skills and retraining.

Treatments like deep brain stimulation might not suit everyone with Parkinson's but new approaches like this and GDNF mean a more optimistic outlook for those diagnosed with the condition, now and in the future.

help and info

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organisations

Parkinson's Disease Society (PDS)
215 Vauxhall Bridge Road
London SW1V 1EJ
Helpline: 0808 800 0303 (Mon-Fri 9.30am-5.30pm)
Tel: 020 7931 8080
E-mail: enquiries@parkinsons.org.uk
Website: www.parkinsons.org.uk
Provide support, advice and information to people with Parkinson's, their carers, families and friends, and to health and social services professionals involved in management and care. The confidential helpline is staffed by nurses who offer advice, information, support and a 'listening ear' to anyone affected by Parkinson's. The website has lots of information including factsheets.

YAPP&Rs – Young Alert Parkinson's, Partners and Relatives
PDS UK
Vauxhall Bridge Road
London SW1V 1EJ
Helpline: 0808 800 0303 (Mon-Fri 9.30am-5.30pm)
E-mail: webmaster@yap-web.org.uk
Website: ww.youngonset-parkinsons.org.uk
A subsidiary body within the Parkinson's Disease Society with the specific aim of representing all young onset people, their families and carers. Offers information, advice and support. See the website for details of local UK groups.

websites

Awakenings
www.parkinsonsdisease.com
This Parkinson's disease information site aims to improve understanding and management of PD. Features information on the causes of PD, advice on living with PD and coping with everyday life, plus details of PD support groups and associations.

Brain Research Trust
www.brt.org.uk/news.php
Information on the Parkinson's appeal, which is raising money to establish a unit in London to perform deep brain stimulation surgery.

Deep Brain Stimulation
www.parkinsons.org.uk/Templates/Internal.asp?NodeID=93555
This section of the Parkinson's Disease Society website has information on deep brain stimulation, as well as other treatments for the condition.

EPDA (European Parkinson's Disease Association)
www.epda.eu.com
Aims to promote international understanding of Parkinson's disease and to enable patients and carers to draw on best caring practice worldwide, access the latest medical and surgical advice, and make informed choices to achieve the best quality of life possible.

European Medical Care
www.euro-meds.com/surgery/dbs/dbs.htm
This UK multinational is based in Belgium and offers deep brain stimulation surgery for people with Parkinson's. The website has a range of information about the technique.

'James'
http://james.parkinsons.org.uk
This website is about Parkinson's disease: what it is, where you can get support, what you can do to fight its effects, and how the Internet can help. Features lots of information and links to other sites.

The Parkinson's Disease Foundation (PDF)
www.pdf.org
American organisation devoted to education, advocacy, and the funding of research. Includes information about symptoms and treatments, and features a range of question and answers.

SPRING (Special Parkinson's Research INterest Group)
http://spring.parkinsons.org.uk
The official special interest group of The Parkinson's Disease Society of the UK.

reading

	Lucky Man by Michael J. Fox (Ebury Press, 2003) The remarkable memoir of the actor Michael J Fox documenting his first ten years living with Parkinson's Disease. Get this book

	Parkinson's Disease: A Complete Guide for Patients and Families by William Weiner, Lisa Shulman and Anthony Lang (Johns Hopkins Press Health Books, 2002) Up-to-date information on symptoms, diagnosis, treatment and management of PD to help people cope with medical, emotional and practical challenges. There is advice on medications, diet, exercise, complementary therapies and surgery. Get this book

	Awakenings by Oliver Sacks (Picador, 1991) A narrative about the awakening of 20 patients from a zombie-like state they had suffered for over 40 years. A new drug meant the sleeping sickness disease was now treatable. Sacks offers his own observations and the patients' reactions. Get this book

	BMA Family Doctor Series: Parkinson's disease by Tony Smith (Editor) (Dorling Kindersley, 2000) A reference guide to PD which features practical advice and answers to common questions. Includes information on diagnosis and treatment. Get this book

	The Parkinson's Disease Handbook by Richard Godwin-Austen (Sheldon Press, 1997) An informative guide on PD aimed at anyone with the disease, and their friends and family. It discusses symptoms and outlines available treatments. Get this book

	Parkinson's Disease: The complete guide for patients and carers by Abraham Lieberman and Frank Williams (HarperCollins, 1995) Provides advice on living with PD, considers various medications available, looks at alternative treatments and discusses the importance of fitness and healthy eating. Get this book