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EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association
EPDA - European Parkinsons Disease Association
LIFE WITH PARKINSON'S
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EXECUTIVE SUMMARY

This awareness campaign, led by the European Parkinson’s Disease Association (EPDA), will help raise awareness of the impact that Parkinson’s has on daily life and improve the understanding and knowledge relevant for all stages of the disease.


“Life with Parkinson’s”

The booklet “Life with Parkinson’s” contains very open and personal stories told by people living with Parkinson’s in various countries, and reflections concerning the challenges that the disease poses in everyday life.  Facts linked to the stories explain the different symptoms and how they affect people with Parkinson’s and their families.  To reinforce the difficulties that they face daily, two short films have been produced.


Facts

Three people with Parkinson’s describe exactly what it is like for them and how, with medical treatment, they are able to live a relatively normal life.  Health economic data linked to their medical cases are also included, together with statistical data that provides a picture of the prevalence of Parkinson’s in Europe, broken down into countries and age groups.  Literature references make it possible for further information on Parkinson’s to be reviewed, with neurologist Professor Per Odin from Bremerhaven in Germany outlining four different examples of advanced treatment of the disease.  Finally, brief answers to some of the most frequently asked questions relating to Parkinson’s are given.


Parkinson’s disease

Parkinson’s disease is a progressive neurological disorder that is considered to be one of the most common neurological conditions.  It is caused by the destruction of nerve cells in the brain that produce the neurotransmitter, dopamine.  A similar destruction occurs naturally with ageing, but in Parkinson’s the process is much faster. In Parkinson’s, certain specific nerve cells are lost leading to the typical major symptoms of tremor, stiffness of muscles and slowness of movement.  Every case of Parkinson’s is different and not everyone experiences the same symptoms.  For example, not all people develop tremor and, for some, rigidity is the major symptom. With modern medication, symptoms can be well controlled.


Prevalence

It is estimated that 6.3 million people have Parkinson’s worldwide, affecting all races and cultures.  The age of onset is usually over 60, but it is estimated that one in ten are diagnosed before the age of 50, with slightly more men than women affected.  Anyone can get Parkinson’s, but it is more common in older people.  It is not contagious and cannot be spread from one person to another. According to available statistics, 1.2 million people in Europe have Parkinson’s: approximately 260,000 in Germany; 200,000 in Italy; 150,000 in Spain; 120,000 in UK and 117,000 in France.


Treatment

Whilst treatment is constantly improving, researchers have not yet been able to find a way to prevent or cure Parkinson’s.  But the symptoms can be effectively controlled, often using a combination of medication, conventional therapies (such as physiotherapy, occupational therapy, speech and language therapy) complimentary therapies (such as yoga and Tai Chi) and surgical treatments, such as deep brain stimulation (DBS).

There are several medications used to treat Parkinson’s and availability varies from country to country.  The most common are: levodopa, dopamine agonists, catechol-O-methyl transferase (COMT) inhibitors and monamine oxidase B (MAO-B) inhibitors.  There is no single optimal treatment because the condition affects each individual differently.

Progression is usually very gradual.  With symptoms and responses to treatment being different for each individual, it is not possible to accurately predict progression.  In the beginning, doctors offer oral drug medication; as the disease progresses other treatments become necessary


DIAGNOSIS ANd TREATMENT OF PARKINSON’S DISEASE

Neurologist professor F. Stocchi describes the importance of early diagnosis and the early initiation of effective treatment to give people the best chance of controlling their symptoms and slowing the progression of the disease.


Indications and contraindications for advanced Parkinson’s disease THERAPIES

Neurologist professor P. Odin describes indications (sound reasons to use specific medication, procedures, tests or surgery) and contraindications (factors that increase the risks involved in carrying out medical procedures or using particular medication) for advanced Parkinson’s therapies.  In summary, he states that each case is unique and reaching the decision to proceed with advanced Parkinson’s therapy demands a high level of expertise in the treatment of Parkinson’s.


“On-off"

The “on-off” phenomenon is a characteristic that some people with long-standing Parkinson’s present.  It can best be described as an unpredictable shift from mobility - “on” - to a sudden inability to move - “off” - with “off” to “on” occurring suddenly.


Three patients

Mr Wilhelm Walter (b.1957) noticed the first signs of Parkinson’s when he was 42.  Following various treatments, DBS was performed.  The operation took place without complications and Mr Walter has been able to resume full-time working.

Mrs Kristina Mueller (b.1947) developed her first Parkinson’s motor symptom when she was 48.  Following some complications, apomorphine treatment was changed to levodopa/carbidopa intraduodenal infusion.  The results were much better with no side effects or complications.  After three and a half years, Mrs Mueller has been able to continue working full-time.

Mr Andrew Brown (b.1952) developed the first signs of Parkinson’s when he was 45.  Thanks to his treatment he has been able to return to working full-time.

Linked to the three patient case histories is health economic data demonstrating the costs involved and the benefits to society when Parkinson’s is treated correctly


References

Over 50 references are included to enable easier access to validated information about Parkinson’s.  Different aspects, treatments, side effects and comorbidities are listed as subheadings


Questions and answers

What is Parkinson’s disease?  Can the disease be prevented?  What are the symptoms?  What treatments are available?  How can I find more information about the disease?

More than 20 of the most frequently asked questions have been compiled – and answered - to make it easier to learn more about the disease