Adrenoleukodystrophy (ALD) is a serious disease characterized by progressive neurodegeneration and adrenal insufficiency. There are several types of ALD, which differ in severity and rate of progression.
A treatment that may help patients maintain mobility and independence is occupational therapy.
What an occupational therapist does
Occupational therapists use daily activities to treat patients with disabilities. They can help patients find easier ways to do daily tasks, suggest adaptive devices, and work with physical therapists to design an exercise routine that is safe for the patient and will help build or maintain strength and dexterity. The occupational therapist can also evaluate the patient’s home or school and make suggestions for changes that may be needed for the patient’s safety and comfort, such as building a chairlift or ramp.
Childhood-onset ALD and occupational therapy
Children diagnosed with ALD are generally faced with a rapidly progressing disease. They may have difficulty walking or balancing. Some children may have learning disabilities or lose skills they had already learned. Occupational therapists can work with these children and their caregivers to help them learn basic tasks and maintain muscle strength and control for as long as possible.
For children with ALD who attend school, occupational therapists can assess the school schedule to ensure it is not too taxing as well as suggest ways to make the school day easier for the child — such as giving them rest breaks between periods or extra time to walk between classrooms.
Adult-onset ALD and occupational therapy
Adults with ALD generally have the milder form of the disease, which progresses more slowly. Patients may have difficulty with muscle control, making walking, dressing, and working difficult. Occupational therapy can help streamline many tasks as well as provide patients with adaptive devices to make daily tasks easier.
There are many adaptive devices to assist patients depending on their needs. For example, there are adaptive devices to help with basic tasks such as tying shoes, dressing, or brushing teeth as well as walking aids such as canes, braces, and wheelchairs or motorized chairs. Occupational therapists can prescribe any of these devices and help patients learn to use them safely and effectively.
When should patients begin occupational therapy?
Patients and their caregivers should meet with an occupational therapist as part of their treatment team as soon as possible after diagnosis.
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