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“I informed my friends at a gathering, when there was some hinting on the issue that I maybe just need to exercise more, by showing them an article... This article explained Cervical Dystonia in a way that I feel relates a lot to how my (Norwegian patient with dystonia)

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the invisible burden of ataxia Patients with ataxia report regularly receiving the following comments from the public:


That they appear drunk, due to movement or speech problems


That they are clumsy, and don’t look ill or like they have a real disease

Many patients with ataxia need to use a wheelchair. They report that:


People often ignore them and speak only to the person attending them


Some people speak them as if they were a child, or as if they must be deaf (Comments reported on the Facebook page of Euro-ATAXIA)

the need for awareness-raising campaigns Campaigns are needed to increase awareness and understanding of neurological and chronic pain conditions among the general public, employers, and healthcare professionals. Increasing awareness will help reduce stigma and encourage people to seek help for possible symptoms earlier. For disorders such as stroke, where early treatment is extremely important, increasing public awareness can be highly cost-effective. Among health and social care professionals, who most regularly work with people with these conditions, educational interventions can improve those contacts for both the professional and the patient and can also contribute to ongoing professional development. For example the patient group Parkinson’s UK run a range of online and face-to-face training courses for healthcare professionals, from 30-minute courses for people working in primary care to full day courses aimed at social workers and professionals involved in care assessments.

Promoting lifestyle changes to reduce risk and self-manage symptoms For some neurological and pain conditions the opportunity in raising public awareness is not just to make life better for those living with the disorder, but also to prevent it, because risk for developing the condition is linked to lifestyle factors such as diet and exercise. For cardiovascular disease, the links with smoking, obesity and diet are widely accepted by the public and routinely managed by doctors. It is much less widely known that lifestyle interventions are just as important in preventing conditions such as stroke and dementia. For example, eating a Mediterraneanstyle diet reduces risk for disorders including dementia, Parkinson’s and stroke more than it reduces risk for cardiovascular disease18. Around half of a person’s risk for Alzheimer’s disease can explained by seven lifestylerelated factors: hypertension, obesity, diabetes, smoking, depression, cognitive activity/ education and physical activity19. Educating the public, including healthcare professionals and employers, about the preventability of some neurological and pain disorders, and lifestyle choices supporting healthy aging, has potential to greatly reduce the economic as well as personal burden of these disorders. Where prevention is not possible, patient-led self-management is an important piece of the sustainable economic future for European healthcare. In many long-term conditions, interventions such as peer-support services can be emergency room attendance, hospital admissions and shorter hospital stays; such interventions could reduce healthcare spend by 7%20.dy: the swedish national stroke campaign


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The Brain, Mind and Pain Book of Evidence  

The Brain, Mind and Pain Book of Evidence  

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