Interview conducted by April Cashin-Garbutt, BA Hons (Cantab)
Please can you give a brief introduction to Parkinson’s?
Parkinson’s disease is a neurological condition that is caused when brain cells, that produce the chemical messenger dopamine, start to die. This consequently causes problems with movement. The main initial symptoms would perhaps be a tremor, slowness of movement and a stiffness of movement as well.
I think what we increasingly understand is it is not those movement problems that are necessarily the biggest factors and problems for people living with Parkinson’s, but it is the non-movement problems. This may include problems with mental health, depression, memory problems, anxiety, problems with sleep and constipation. All of these issues really make living with Parkinson’s a real challenge.
Who does Parkinson’s affect?
Parkinson’s impacts 1 in 500 people in the UK, so 1 person every hour is diagnosed with Parkinson’s. That means that there are 127,000 people living with Parkinson’s in the UK.
The average age of diagnosis would be in your 60’s, but we know than 1 in 20 are diagnosed before their 40th birthday, so it really does impact people across a range of ages.
Parkinson’s affects slightly more men than women, but it is not a massive imbalance between the genders.
What are the main symptoms of Parkinson’s?
A diagnosis would be given based on people looking out for that tremor, the slowness of movement, the stiffness etc. There may also be mental health problems, anxiety, depression and dementia can be an issue for people with advanced Parkinson’s. Continence may also be a problem. Parkinson’s really is a challenging condition to live with as it affects so many aspects of day-to-day life.
What is currently known about the causes of Parkinson’s?
That’s the big question to try to understand the causes of Parkinson’s. We know that it is a combination of genes and environment. It is only in very rare cases that Parkinson’s is directly hereditary, but we understand that it is a combination of genes, which give some people a propensity to get Parkinson’s, but then there is some kind of environmental factor that triggers the development of the condition.
How does Parkinson’s affect people’s lifestyles and those around them?
Well Parkinson’s impacts people in different ways. The condition progresses at a different pace for different people and people will respond to treatments in a different way.
What we are wanting to talk about in the campaign we are launching is how difficult Parkinson’s makes everyday tasks, whether that be getting dressed; putting on a pair of socks; making a cup of tea; buttering a slice of toast etc. If you are experiencing those movement problems these everyday tasks are a challenge.
There are also other problems, for example people with Parkinson’s may not be able to smile due to the lack of movement meaning they have a lack of facial expression. People talk a lot about being misunderstood and appearing to be grumpy or disinterested or bored. People may experience an inability to smile at their grandchildren or at strangers in a supermarket. This can create problems for people.
People can often have a quiet voice because of Parkinson’s as well. So I think it is those communication issues that create real challenges for people.
How good is public awareness and understanding of Parkinson’s?
Well we don’t think it is very good. We have just done a survey and what we found was that most people thought that Parkinson’s was just a tremor of the hands. That really is just one of the minor symptoms of the condition. It may be one of the first symptoms that people notice, but actually not everyone living with Parkinson’s necessarily has a tremor so it is just a small factor.
It was concerning to see that 70% of the UK population think that Parkinson’s is just a tremor. I think this is one of the big issues. The other issue is that people think that Parkinson’s is just a condition that elderly people experience, whereas people of all ages can develop Parkinson’s so this is another message that we want to get out to members of the public.
Why do you think public understanding of Parkinson’s is low?
About 1 in 500 have Parkinson’s so maybe it is not as common as other conditions and so it hasn’t made it into public awareness as much as cancer has over previous years. But I think it is a challenge because with more and more people living longer it is important that people do understand the impacts that neurological conditions such as Parkinson’s have on people.
Why is it important to increase public awareness and understanding of the condition?
I think there are a couple of reasons why it is important to increase public awareness of Parkinson’s. The first is that people living with Parkinson’s find it a real challenge when their condition is not understood by people around them. People with Parkinson’s often talk about people thinking they are drunk and that causes a real problem because of their shakiness or unsteadiness. So it is about having more understanding in the community.
The second reason is that if people have an understanding of the impact Parkinson’s has on people’s lives then they’ll want to do more in terms of promoting better health and social care services for people living with Parkinson’s and also more research going into better understanding and better treatment of the condition as well.
Please can you tell us about Parkinson’s UK’s new awareness drive?
We are launching an awareness campaign to try to help the public understand more about Parkinson’s. We are doing that through a range of posters that we are placing particularly around the rail network, but also in newspapers and online as well.
What we are doing is taking images of everyday tasks that we all take for granted, such as putting on a tie, doing up your shoe laces, buttering a slice of toast etc., and we’re doing something with the images to try and get over the message that Parkinson’s mixes up the messages that the brain sends to the body making those everyday tasks complex.
We ask people to look out for the posters and to try solve the puzzle and, in so doing, understand more about Parkinson’s.
Where can readers find more information?
If anyone wants more information they can visit our website: www.parkinsons.org.uk
Or, if anyone wants to speak to someone about Parkinson’s they can call our confidential helpline: 0808 800 0303
About Steve Ford
Steve Ford joined Parkinson's UK as chief executive in September 2005.
Parkinson’s UK is determined to find a cure and improve life for everyone affected by Parkinson’s. Steve has led a major expansion of the charity, establishing a national network of Parkinson’s Information and Support Workers and developing the research, campaigning and education activities of the charity. In 2009, the charity went through a major rebrand and set out its ambitious 5 year strategy. This involved a change in name from Parkinson’s Disease Society to Parkinson’s UK. The charity has increased its income by 50% over the past 5 years as more individuals have been inspired to support the charity. Parkinson’s UK won the Charity Time’s Charity of the Year 2011 award in recognition of the impact of the new strategy.
Steve is also chair of the Neurological Alliance.
Before taking up his present position, he was chief executive of a NHS Primary Care Trust in Kent having worked for the NHS for over 20 years in a range of general management positions.