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Updated: Jun 24, 2026
12:43
A Protocol for Comprehensive Assessment of Bulbar Dysfunction in Amyotrophic Lateral Sclerosis (ALS)
Published on: February 21, 2011
Usage of support services in primary lateral sclerosis.
Tracy L Peters1, Mary Kay Floeter
1Human Spinal Physiology Unit, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Summary
Primary lateral sclerosis (PLS) patients require gait aids and home assistance as their condition progresses. The internet is a key resource for information and support for these patients.
Area of Science:
- Neurology
- Rehabilitation Medicine
- Patient Support Services
Background:
- Amyotrophic lateral sclerosis (ALS) patients utilize various support services.
- Primary lateral sclerosis (PLS) presents a distinct clinical spectrum with slower progression.
- Allied health and social support needs in PLS are not well-defined.
Purpose of the Study:
- To investigate the needs for allied health services and social support in patients with primary lateral sclerosis (PLS).
- To characterize the utilization of assistive devices and support systems in PLS.
Main Methods:
- Survey of 25 patients with PLS and their caregivers.
- Assessment of assistive device usage.
- Evaluation of support service utilization.
Main Results:
- Patient needs for assistance evolve with disease progression.
- Gait-assistive devices and home help for mobility-related activities are primary needs.
- Significant utilization of the internet for information gathering and patient support groups was observed.
Conclusions:
- PLS patient needs for support services change over time.
- Targeted interventions for mobility and home assistance are crucial for PLS management.
- Online resources play a vital role in PLS patient care and support.
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