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Exploring physical activity in people with rare neurological conditions

The PARC (Physical Activity for people with Rare Neurological Conditions) programme development work is currently gathering information prior to developing the PARC intervention for the next stage of funding.


The PARC intervention will be a self-management program to support physical activity for people with rare neurological diseases, including ataxias (e.g. Friedreich’s ataxia), hereditary spastic paraparesis, Huntington’s disease, neuromuscular diseases (e.g. polyneuropathies, myasthenia and muscular dystrophies), motor neurone disease, atypical Parkinsonisms including PSP and CBD. With this survey, we would like to hear from you as we are interested in understanding:

  • If you are generally physically active;
  • If you feel sufficiently confident in engaging in physical activity;
  • What the major barriers and possible solutions are in case you do not feel motivated or engaged.

Physical activity, according to the World Health Organisation definition, is described as any bodily movement produced by the muscles that require us to expend energy. Physical activity includes exercise as well as other activities which involve bodily movement and are done as part of playing, working, active transportation, house chores and recreational activities.

Exercise is a subcategory of physical activity that is planned, structured, repetitive, and purposeful in the sense that the aim is to improve or maintain fitness.

Exploring physical activity in people living with a rare condition. If you’re a person living with PSP or CBD  and would like to tell us about your experience of being physically active, please click on this link: https://opinio.ucl.ac.uk/s?s=62881

If you are the carer and/or family member of a person living with PSP or CBD, and you’d like to tell us about your experience of supporting the person you care for in being physically active, please click on this link: https://opinio.ucl.ac.uk/s?s=62892

Many thanks,
The PARC Team
National Hospital for Neurology & Neurosurgery, UCLH, and collaborators

PSPA are pleased to have collaborated with the PARC (Physical Activity for people with rare neurological conditions) team on this project

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