According to a story from Charcot-Marie-Tooth News, patients living with Charcot-Marie-Tooth disease have reported in a recent survey that their symptoms of pain and decline in mobility increased during the ongoing coronavirus/COVID-19 pandemic due to decreases in physical activity and the disruption of their normal exercise routines. These findings highlight how important it is for these patients to do their best to exercise and maintain their strength; unfortunately, the pandemic means that many patients may have to establish new routines.
About Charcot-Marie-Tooth Disease
Charcot-Marie-Tooth disease is a hereditary disorder of the peripheral nervous system. It is most characterized by a progressive loss of touch sensation and muscle tissue in several different parts of the body. The cause of this disease is usually linked to a genetic mutation, but the mutation involved varies depending on the variant of Charcot-Marie-Tooth disease. There are multiple types of Charcot-Marie-Tooth disease, with all types aside from type 2 having a demyelination effect. Type 2 causes damage to the neuronal axon instead. Symptoms include foot drop, muscle wasting (typically in the arms, legs, and hands), painful muscle spasms, loss of sensation in the limbs, scoliosis, trouble speaking, chewing, and swallowing, and tremors. Treatment typically includes therapy and surgery in order to maintain function. There is no cure. The disease can occur early in life or as late as the 30’s and 40’s. To learn more about Charcot-Marie-Tooth disease, click here.
No End in Sight
The pandemic, especially during the initial lockdown period, has been a challenge for people around the world no matter their health status. And unfortunately, in the US at least, the possibility of another lockdown phase is looming as the virus runs rampant and unchecked across the nation, with more daily infections and hospitalizations than ever.
Physical Therapy is Essential
While isolation and inactivity can be frustrating for many people, for patients living with this disease it can have severe health implications. Physical therapy and exercise is essential for them to avoid progression of muscle weakness and other symptoms, but the pandemic may deter or entirely prevent people from visiting gyms or therapy centers.
279 patients were surveyed and stated that their average number of walks per week dropped from 3.6 to just 2. Patients reported increased pain in their arms and legs and a greater fear of falls. Therapists are now having to work harder in an effort to restore function that was lost. A tele-rehabilitation system that allows them to communicate with patients may be critical to this effort.
Check out the original study here.