Most of us suffering with Charcot Marie Tooth (CMT) develop contractures. Contractures are defined as a stiffening of joints resulting in loss of movement of the joint and musculoskeletal deformities (most commonly of the feet and hands). They occur because as muscles weaken around a joint due to the effects of CMT, they cause the tendons, ligaments and other tissues around the joints to shorten/stiffen.
The most frequent initial presentation of CMT (according to the NIH) is distal weakness and atrophy, manifesting with foot drop and pes cavus (high arched feet).
Foot drop (also known as plantar flexion contracture) is due to shortening of the Achilles tendon. As the Achilles tendon shortens, the foot is pulled down. This, coupled with weaking of muscles involved in lifting the front part of the foot (due to CMT), causes the foot to remain in plantar flexion. This results in a decrease in range of motion (ROM), and an increase in tripping and falls.
Stretching has often been recommended as a method of managing limb contractures for those suffering from neuromuscular diseases. Passive and static stretching techniques have most commonly been suggested for use in maintaining and improving range of motion and decreasing muscle stiffness in those suffering from neuromuscular diseases. According to the American Sport and Fitness Association (ASFA), in passive stretching, an external force or assistance is used to move a muscle into a stretched position. The individual receiving the stretch remains relaxed, and the force—applied by a partner, stretching strap, or gravity—gradually elongates the muscle. Static stretching (the one most of us are familiar with) is where you hold a stretch in a stationary position for a prolonged period.”
Research on Physical Therapy/Physiotherapy with CMT Patients
In a 2020 study entitled Aspects Concerning Physical Therapy’s Role in Helping the Patient Suffering from Charcot-Marie-Tooth Disease Recover, researchers monitored an adolescent male who participated in a customized movement and exercise treatment program supplemented by heat therapy, hydrotherapy and massage. Post-treatment data showed that the patient had reduced pain, increased joint mobility and improvement in balance. They concluded that continuous rehabilitation through physical therapy can improve a patient’s walking stability and overall physical functioning capabilities.
These findings were echoed by the 2021 study Impact of Customized and Sustained Physiotherapy in Charcot-Marie-Tooth Disease which aimed to show that “consistency in performing physiotherapeutic exercises helps in gaining maximum possible functional independence”. Following electrical stimulation and a variety of strengthening exercises the patient showed substantial improvement in strength, range of motion, gait and balance.
Researchers in a 2024 study entitled Effects of intensive rehabilitation on functioning in patients with mild and moderate Charcot–Marie-Tooth disease: a real-practice retrospective study administered an intensive 3 week physiotherapy program (5 days/week) consisting of PT-guided exercises, aerobic activity, electrical stimulation and pressure, laser and ultrasound therapies. After administration of this program, their results showed that muscle strength, pain, fatigue, cramps, balance and walking speed and ability all improved.
A key finding to note from this study is that all of these outcomes returned to their original levels after 12 months. Citing the lack of continuity in physical activity after discharge, researchers concluded that continued participation in rehabilitation activities plays a central role in reducing the disabilities brought on by CMT in order to maintain and/or gain maximum possible functional independence.
As always consult with your doctor or see a licensed physical therapist to help guide you. REMEMBER… “Just Keep Moving, Moving, Moving”!
Author: Teresa M. Carroll, PhD (Patient Advocacy Advisor-Therapies for Inherited Neuropathies; TIN)