Orphanet: Disability
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ORPHA:240085  Progressive supranuclear palsy-parkinsonism syndrome

:: Activity limitation/participation restriction is described according to the Orphanet Functioning Thesaurus, derived and adapted from the International Classification of Functioning, Disability and Health – Children and Youth (ICF-CY, WHO 2007). The provided information is assessed from the whole patients’ population affected by the disease, receiving standard care and management (specific and/or symptomatic management, prevention and prophylaxis, devices and aids, care and support). Functional consequences are organized by their frequency in the patients’ population. This general information may not apply to specific cases. Some difficulties reported here can occur with a different temporality or severity degree, and others that are not listed can nevertheless arise.

 Loss of an ability
Very frequent
Temporality
Severity
Reading
Permanent limitation
Moderate
Focusing attention
Permanent limitation
Moderate
Focusing attention
Transient limitation
Moderate
Receiving spoken messages
Permanent limitation
Moderate
Receiving messages in sign language
Permanent limitation
Moderate
Receiving nonverbal messages
Permanent limitation
Moderate
Receiving written messages
Permanent limitation
Moderate
Speaking
Permanent limitation
Moderate
Producing messages in sign language
Permanent limitation
Moderate
Producing nonverbal messages
Permanent limitation
Moderate
Writing messages
Permanent limitation
Moderate
Participating in a conversation
Permanent limitation
Moderate
Using communication devices
Permanent limitation
Moderate
Walking long distances
Permanent limitation
Severe
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Complete
Frequent
Temporality
Severity
Seeing/watching
Permanent limitation
Severe
Writing
Permanent limitation
Moderate
Calculating
Permanent limitation
Moderate
Making decisions/taking initiatives/finding solutions
Permanent limitation
Severe
Standing
Permanent limitation
Severe
Sitting
Permanent limitation
Moderate
Bending
Permanent limitation
Severe
Transferring oneself
Permanent limitation
Severe
Maintaining a standing position
Permanent limitation
Severe
Maintaining head position
Permanent limitation
Severe
Reaching and catching objects
Permanent limitation
Severe
Lifting and carrying objects
Permanent limitation
Moderate
Handling objects (fine hand use)
Permanent limitation
Severe
Walking short distances
Permanent limitation
Severe
Occasional
Temporality
Severity
Calculating
Permanent limitation
Severe
Receiving spoken messages
Permanent limitation
Complete
Receiving messages in sign language
Permanent limitation
Complete
Receiving nonverbal messages
Permanent limitation
Complete
Receiving written messages
Permanent limitation
Complete
Speaking
Permanent limitation
Severe
Producing messages in sign language
Permanent limitation
Severe
Producing nonverbal messages
Permanent limitation
Severe
Writing messages
Permanent limitation
Severe
Participating in a conversation
Permanent limitation
Severe
Using communication devices
Permanent limitation
Severe
Sitting
Permanent limitation
Severe
Lifting and carrying objects
Permanent limitation
Severe
Handling objects (fine hand use)
Permanent limitation
Complete
Walking short distances
Permanent limitation
Complete
Walking long distances
Permanent limitation
Complete
Source: Expert
Last update: 28/08/2019

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