Living With Charcot-Marie-Tooth Disease
Aids and Adaptations
Muscle weakness caused by CMT can make performing daily tasks difficult. There are many aids and adaptations that can assist patients and improve their quality of life. An occupational therapist can help patients identify and learn how to use them.
Anesthesia
There are some special considerations that should be accounted for when putting CMT patients under anesthesia. CMT patients should inform their doctors of their condition, and physicians should take special care when performing procedures that require local or general anesthesia on people with CMT.
Diet
Weight gain can be a serious issue in CMT, as weakened muscles and fatigue can make it difficult for patients to stay active. Eating a healthy and balanced diet, developed under the guidance of a doctor or nutritionist, can play an important role in managing weight.
Exercise
A consistent exercise regimen is one approach that can help with mobility problems, potentially delaying disease progression. This can also help improve patients’ confidence, fitness, and mobility.
Driving
Many CMT patients are able and allowed to drive, but earning a driver’s license depends on the physical abilities of the individual patient. These skills vary among patients and are affected by the type of CMT a person has.
Schooling
CMT symptoms may begin while patients are still in school, so it is important for caregivers and teachers to be aware of any accommodations they may require. Good communication between parents, teachers, and health professionals is important to ensure children with CMT successfully complete their education.
Sleep
CMT has been associated with several sleep disorders, which can either decrease the quality of sleep or make it difficult to achieve sleep. There are different types of sleep disorders that a CMT patient might experience, including sleep apnea and restless legs syndrome.
Travel
Travel can be difficult for CMT patients, but with proper planning, organization, and accommodations, it is feasible and can still be enjoyable. It is important for CMT patients to plan travel around their accessibility needs.
Vaccination
Patients with CMT are equally at risk of infectious diseases, and if contracted, these conditions can be damaging or fatal. The best defense in many cases is vaccination.
Hand and Foot Care
CMT causes progressive muscle weakness and decreased sensation in hands and feet. Caring for the hands and feet can help alleviate some symptoms of the disease and prevent complications.