Research achievements: more than a movement disorder
Our research
has changed the way we think about Parkinson's.
Parkinson's is more than a movement disorder. It affects every
aspect of daily life.
Find out more:
Listen online
Professor Ray Chaudhuri describes how
the non-motor aspects of the condition, including problems with
sleep, depression and memory, is leading to better care for people
with Parkinson's - Listen here
Quality of life matters most
In
1995, our researchers designed the PDQ-39. This is a
questionnaire now used in clinical research worldwide to measure
quality of life in people with Parkinson's.
"It is the first scoring system that asks about mobility,
emotions, social support and communication issues. Today,
researchers use our questionnaire to monitor quality of life during
global clinical trials.
"Our work ignited a crucial debate about
quality of life that just wasn't happening 10 years ago.
Specialists only considered the physical symptoms of Parkinson's.
They rarely ask how a person felt about living with the
condition."
Professor Crispin
Jenkinson,
Researcher
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Measuring every aspect of
Parkinson's
Almost everyone with Parkinson's will experience other symptoms outside movement problems. These
are known as non-motor symptoms.
In 2007, we carried out the largest ever UK survey of people
with Parkinson's. We found that 92% of people with Parkinson's
experience non-motor symptoms at some stage.
Some common non-motor symptoms are:
- memory loss
- mood changes
- urinary and bowel problems
- difficulties sleeping
In 2008, as part of an international
effort, Parkinson's UK researchers helped to redesign the
Unified Parkinson's Disease Rating Scale (UPDRS) to include
non-motor aspects.
The UPDRS is the most widely used scale for measuring
the severity of Parkinson's symptoms. It is used in clinical trials
all over the world to assess new treatments and
therapies.
"Specialists keep track of a person's symptoms
using medical scales. The Unified Parkinson's Disease Rating Scale
is the most widely used scale but it neglects non-motor
symptoms.
"Our new and improved scale is more meaningful to people with
Parkinson's. It gives a complete picture of all the symptoms and
will eventually replace the existing scale."
Dr Anette
Schrag,
Consultant Neurologist
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Tackling non-motor
symptoms
Non-motor symptoms like sleep, mood and memory problems
often have a greater impact on the lives of people with Parkinson's
than movement difficulties.
In 2006, researchers supported by Parkinson's UK
produced a simple questionnaire to help recognise non-motor
symptoms.
Non-motor symptoms questionnaire
"For many years, non-motor symptoms were
not considered important and remained untreated. Medical
professionals didn't ask about them and patients didn't disclose
them. So we developed the non-motor symptoms questionnaire.
"The questionnaire helps specialists around the world recognise
and treat non-motor symptoms.
"Anyone can download the questionnaire from the Parkinson's UK
website, fill it out and take it to their doctor, consultant or
specialist Parkinson's nurse."
Professor Ray Chaudhuri,
Consultant Neurologist
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Patricia's story
"My specialist only asked about my
physical symptoms. But I also had dreadful feelings of fear and
panic. I was prescribed medication that improved my mobility but
the anxiety continued and made my life a struggle.
"Since my medication has been adjusted, my anxiety has subsided.
It is an enormous relief to know that the problem was a part of my
Parkinson's and it is treatable."
Patricia has been
living with Parkinson's for 4 years
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