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ORPHA:35689  Primary lateral sclerosis

:: 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
Standing
Permanent limitation
Severe
Sitting
Permanent limitation
Severe
Bending
Permanent limitation
Severe
Transferring oneself
Permanent limitation
Severe
Maintaining a standing position
Permanent limitation
Severe
Reaching and catching objects
Permanent limitation
Severe
Walking short distances
Permanent limitation
Severe
Walking long distances
Permanent limitation
Severe
Performing vigorous activities (climbing, running, jumping, swimming,...)
Permanent limitation
Severe
Dressing/undressing
Permanent limitation
Moderate
Managing one's health (diet, medications, prevention, needs, assistance, monitoring)
Permanent limitation
Moderate
Moving around within the home
Permanent limitation
Moderate
Moving around outside the home
Permanent limitation
Severe
Using transportation
Permanent limitation
Severe
Driving
Permanent limitation
Severe
Shopping
Permanent limitation
Moderate
Cooking/preparing meals
Permanent limitation
Moderate
Doing housework
Permanent limitation
Moderate
Looking after/helping others
Permanent limitation
Moderate
Engaging in paid work in a standard environment
Permanent limitation
Complete
Engaging in paid work in a supported/sheltered environment
Permanent limitation
Severe
Seeking employment
Permanent limitation
Severe
Performing professional tasks
Permanent limitation
Severe
Carrying out daily routines
Permanent limitation
Moderate
Taking part in community life
Permanent limitation
Low
Playing with others
Permanent limitation
Moderate
Practicing sports
Permanent limitation
Severe
Travelling
Permanent limitation
Moderate
Frequent
Temporality
Severity
Speaking
Permanent limitation
Moderate
Writing messages
Permanent limitation
Moderate
Participating in a conversation
Permanent limitation
Moderate
Using communication devices
Permanent limitation
Moderate
Lifting and carrying objects
Permanent limitation
Moderate
Handling objects (fine hand use)
Permanent limitation
Moderate
Washing oneself
Permanent limitation
Moderate
Caring for body parts (skin, teeth, nails, hair, genitals)
Permanent limitation
Moderate
Getting good quality sleep
Permanent limitation
Low
Interacting with other people
Permanent limitation
Low
Undertaking a simple task
Permanent limitation
Low
Undertaking a complex/multiple task
Permanent limitation
Moderate
Participating in the arts and cultural activities
Permanent limitation
Low
Occasional
Temporality
Severity
Regulating urination
Permanent limitation
Low
Regulating defecation
Permanent limitation
Low
Carrying out administrative procedures
Permanent limitation
Low
Environmental factors

:: Following are the environmental factors that should be addressed in order to improve the functioning or limit the restrictions deriving from this disease.

Temperature
Source: Pr Mamede DE CARVALHO[Expert]
Last update: 20/12/2016

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