Caring for Patients with Other Dystonia (ICD G24.8)
Author: Mekea Anderson, LCSW-C, CCM Lead REM Clinical Care Coordinator
Disease Overview: Dystonia is a neurological disorder that affects movement and causes the muscles to contract uncontrollably. It can affect one or more parts of the body and causes difficulties with movement or communication. It is more likely to affect women than men. Dystonia is characterized by the parts of the body it affects. Other dystonia or generalized dystonia affects all or most of the body. It is diagnosed through genetic testing, lab work, MRI or CT scan of the brain, and Electromyography (EMG) which measures electric activity in the muscles.
Symptoms & Causes: Most causes do not have a specific cause of the disease. The onset is related to damage or degeneration to the brain, specifically the basal ganglia that regulates movement. Dystonia can also be heredity. Symptoms can be mild to severe.
• Muscle Cramping
• Speech Difficulties
• Uncontrollable Blinking
What’s Working: The treatment options include medications that relax muscles such as Botox injections to the affected areas and baclofen. Patient often receive speech, PT, and OT. Having family support and community resources helps patients to meet their goals.
Condition Management Challenges: Both of my patients with this diagnosis initially had other REM diagnosis that aged out. It was a challenge to have them re-evaluated for a new REM diagnosis. The patients also have developmental delays, and their caregivers have difficulties knowing if they are in pain due to limitations in communication. The caregivers must assist the patients with virtual learning and meetings, attending appointments and administering medications. Both patients will need Power of Attorney or Legal guardianship for their caregivers to make decisions for them as adults.
Care Management Opportunities: The care management needs include non-skilled personal care such as CFC waiver, DDA services for day programs, and referrals for DME/DMS providers for medical supplies and equipment. My patients receive incontinence supplies, hospital bed, wheelchair, and leg braces.
Did the patients have personal care hours before the pandemic? Yes, both REM patients had personal care hours approved before the pandemic. The approved caregivers are family members which was a benefit during the pandemic when exposure to family members outside of the home was a concern.
Do these patients use PDN hours? PDN hours are approved for skilled nursing needs. In this instance, these patients do not have skilled nursing needs and are not approved for PDN hours. These patients receive assistance with non-skilled needs such as bathing, dressing and meal preparation.
What type of pain is associated with dystonia? The pain is related to the muscle cramping and constrictions caused by dystonia. These patients have reported pain and stiffness in their lower extremities.
• Dystonia Foundation
• Vendors: Medirents and Sales, Johns Hopkins Pharmequip, Rehabilitation Equipment Professionals
• Specialists: Neurology, physical medicine
• Support Services and Planning Agencies: TCC, MMARS and Service Coordination; Special Education services at school