PATIENT CARE & THERAPIES
Below are common services and therapies that patients and families may find helpful during their journey. Ask your doctor, social worker or other members of your care team about what might be beneficial and how to get started.
Some individuals who are diagnosed with leukodystrophy are referred to occupational therapy. An occupational therapist assesses the patient’s abilities and then works towards developing, maintaining or recovering the patient’s skills needed for living daily and working. Part of how they do this is by focusing on recognizing and removing environmental barriers to autonomy and participation in common activities. Occupational therapists tend to focus on skills that are important to the patient and set goals for progress based on those desired skills.
(from the Bureau of Labor Statistics and American Occupational Therapy Association)
Physical therapists are movement experts who treat people of all ages and abilities, helping them improve and maintain function and quality of life. Physical therapists create individual treatment plans to match each person’s goals, helping people improve their fitness and function, avoid surgery, and partner in their care. Since many leukodystrophies affect movement, muscle tone and development, physical therapists play a vital role in continuing to improve and maintain physical functions. For many young children, this can also involve "play time" as therapy, which the family may be able to participate in.
(from the American Physical Therapy Association)
Speech Therapy (Speech Language Pathology)
Speech-language pathologists (SLP) work to prevent, assess, diagnose, and treat speech, language, social communication, cognitive-communication, and swallowing disorders in children and adults. In some cases, leukodystrophy patients will have difficulty in one or a number of these areas, and SLPs are able to work with patients and families to ensure that these functions are improved or maintained as much as possible. Of specific importance is the ability to properly drink or swallow, and SLPs can evaluate whether or not it is safe to continue with oral feedings, or if other feeding methods may be appropriate.
(from the American Speech-Language-Hearing Association)
At some point, leukodystrophy families may be faced with choosing whether or not to begin hospice care. Hospice specialists focus on providing comfort care to the patient by managing symptoms or pain, and typically do so in the home, although hospice services may be offered in a hospital or freestanding hospice center. Nurses, doctors and other care team members will come into your home and discuss any new symptoms or issues with you on a regular basis. They can adjust medications and also bring in care equipment, as needed (such as an oxygen or suction machine). Patients can typically remain on hospice for as long as services are needed. Hospice is a way of focusing on the comfort of your loved one over seeking additional curative medical treatment. Deciding what is best for your loved one and family can be difficult and ever changing, and hospice providers can help families through how to properly care for your loved one, and also provide bereavement care or counseling services.