¶ Introduction
The Living With ALS section of ALSWiki.org covers all aspects of living with the disease after receiving a diagnosis. This includes important tasks, making adaptations, and symptom management.
ALS is a complex disease that has a significant impact on both the individual and those around them. Its progressive nature requires regular reassessment of the individual's care needs and access to assistive devices. This is in contrast to discrete injuries, whereby there tends to be a single, immediate change to the individual's condition.
Illustration: Comparison of progressive and non-progressive diseases
¶ Planning and Tasks
¶ General
- Newly Diagnosed With ALS First steps after an ALS diagnosis
- Milestones in ALS 🚧 Significant points in an ALS journey
¶ Health
- Care Decisions Managing care decisions, and end-of-life planning
- Care Planning Resourcing and scheduling of care providers
- Trials and Research General information about ALS research participation
For information about healthcare providers and assistants, see the Healthcare section.
¶ Finance
- Cost Management 🚧 Controlling costs for equipment and care
- Employment Working with ALS, leaving work
- Estate Planning Wills, trusts, finance
¶ Relationships
- Advocacy Raising awareness about ALS
- Memory Preservation Journalling, making recordings, keepsakes
- Telling Others Considerations for telling others about an ALS diagnosis
¶ Activities of Daily Living
For information about assistive equipment for activities of daily living, such as for dressing, grooming, or mobility, see the Occupational Therapy section.
¶ Symptom Management
¶ General
- Drooling
- Dry Mouth
- Edema Swelling, especially in legs
- Fasciculations Twitching
- Limb Weakness
- Neck Weakness
- Perineal Care and Toileting
- Physiotherapy
- Treatments Treatments to slow the progression of ALS
- Sleeping
¶ Breathing
¶ Ventilation
- Ventilation Natural and mechanically assisted breathing
- └ Bi-Level Ventilators Breathing support devices
- └ Tracheostomy Neck tube inserted for breathing
- Breathing Reflexes Coughing, sneezing and yawning
¶ Maintenance
- Breathing Tests Pulse oximetry, and spirometry
- Lung Volume Recruitment Increasing the volume of air in the lungs
- Managing Secretions 🚧
¶ Eating
Eating difficulties are almost universal in ALS. Weakness in the hands and arms makes cutting food and conveying it to the mouth difficult. Difficulties with chewing and swallowing are associated with bulbar weakness.
- Diet and Food Preparation Preparing food which is easier to eat
- Independent Eating Links to: Occupational Therapy: Eating and Drinking
- Chewing and Swallowing
- Tube Feeding
- Oral Medications Considerations for consuming oral medications