I found my way to a physician who specializes in neuromuscular disease, but have been focused on my treatment to give thought to exactly what the specialty does. I did, at least, recognize that neuromuscular relates to both the nervous and muscle systems. This is a little out of character given my long career working in hospital administration, including a few roles a medical staff coordinator.
Several people on my Facebook groups see neurologists for their treatment and one person responded to a comment asking me what a neuromuscular specialist is/does exactly. Hummm, I didn't have an answer, so I turned to Dr. Google once again and found a great article on the role of neuromuscular medicine and physiatry in the management of neuromuscular disease. It is written primarily for healthcare professionals, but has good information and insight for patients and their caregivers. It is worth reading in its entirety if you or someone you care for has a neuromuscular disease.... but here are some highlights.
The foundation of their care interventions are directed at:
- health maintenance and proper monitoring of disease progression and complications
- provide anticipatory, preventive care and optimum management
- maximize health and functional capacities (mobility, transfer skills, upper limb function, self-care skills)
- perform medical monitoring and surveillance to inhibit and prevent complications (disuse weakness, skeletal deformities, bone health problems, respiratory/airway problems, cardiac insufficiency, dysrhythmias)
- promote access and full integration into the community in order to optimize quality of life
- hereditary and acquired diseases of the peripheral neuromuscular system
- includes those that affect anterior horn cells, peripheral nerves, neuromuscular junctions and muscle
- acquired include autoimmune, infectious metabolic, toxic or paraneoplastic (such as ALS, GBS or diabetic peripheral neuropathy)
Prevalence of Neuromuscular Conditions:
- Estimated total prevalence of the most common neuromusculars disease in the US is 500,000.
- Add in all forms of acquired neuromuscular disease and the prevalence exceeds 4 million.
What are examples of the disease?
- Amyotropic Lateral Sclerosis (ALS)
- Mayasthenia Gravis
- Lambert Eaton Syndrome
- Guillain Barre Syndrome
- Diabetic Peripheral Neuropathy
- Duchenne Muscular Dystrophy
Impact of Neuromuscular Disease on Functional Activities: