Charcot Marie Tooth disease is the most common inherited neuromuscular disease Roughly 40 people in 100,000 live with CMT. Clinical presentations show motor and sensory loss in the peripheral nervous system – nerves away from the spinal cord – causing muscle atrophy. CMT patients experience limb muscle wasting, weakness, decreased sensation of vibrations – touch and pain. CMT is progressive (Pareyson & Marchesi, 2009).
DON’T MAKE PROMISES YOU CAN’T KEEP
There is no drug treatment for CMT although experts, CMT community leaders, and CMT fundraising entities continue to promise pharmaceutical solutions; almost in the same sentence as their solicitation of donations. In nearly 30 years of research, these entities have failed to produce results. Why is there so much emphasis on this approach? Should it be – when the data states, “There is evidence that mild to moderate exercise is effective and safe for patients with CMT and leads to a significant improvement in walking ability and lower-limb strength” (Pareyson & Marchesi, 2009). The funds collected by these donation factories are out of balance. More money should be diverted to creating safe and effective exercise programs for CMT patients.
THE SINS OF THE DOCTOR
Exercise in under-prescribed. If there is proof exercise in beneficial for chronic conditions such as CMT, why don’t doctors promote it? They may be unaware of the benefits of exercise intervention as it relates to chronic illnesses, what comprises effective exercise intervention, or lack of training (Hoffmann, Maher, Briffa, Sherrington, Bennell, Alison, Singh, and Glasziou, 2016) Are these acceptable excuses for the lack of exercise prescriptions? No. A patient with a chronic illness deserves the best possible treatments available which includes exercise.
A common myth circulated by those who oppose exercise – as a treatment for CMT – is what has come to be a cliche within the CMT community – “don’t overdo it.” Does this expression have merit? Some may repeat it because they have heard – often from an influential person with CMT – say it; not really having the knowledge base to draw such a misinformed opinion. Doctors for the reasons mentioned above may say it because they are grouping CMT with other neuro disorders, which greatly influences their advice.
It is true in diseases such as post-polio syndrome, facio-scapulo-humeral and
Duchenne muscular dystrophies, and amyotrophic lateral sclerosis; “over doing it” increases disease progression. But not is CMT. The data contradicts that stating, “over work weakness produces no further weakness of overloaded muscles; therefore, CMT
patients should not limit the use of their limbs in daily life in order to prevent muscle strength loss because OW plays no role in disease progression. A fundamental consequence of these results is that exercise is not harmful [bold type added] for CMT1A patients, and possibly for the overall CMT population. ( Piscosquito, Reilly, Schenone, Fabrizi, Cavallaro, Santoro, Vita, Quattrone, Padua, Gemignani, Visioli, Laurà, Calabrese, Hughes, Radice, Solari, & Pareyson, 2014)
When experts, CMT community leaders, CMT fundraising entities get together and promote exercise as a viable treatment, they will be giving what CMT patients really want – RESULTS!
Hoffmann T. C., Maher C., Briffa T., Sherrington C., Bennell K., Alison J., Singh M. F., & Glasziou P. P. (2016 April) Prescribing exercise interventions for patients with chronic conditions. Cmja Review, 188(7), 510-518.
Pareyson, D., & Marchesi, C. (2009, July). Diagnosis, natural history, and management of Charcot–Marie–Tooth disease. Lancet Neurol, 8(), 654-657.
G Piscosquito, M M Reilly, A Schenone, G M Fabrizi, T Cavallaro, L Santoro, G Vita, A Quattrone, L Padua, F Gemignani, F Visioli, M Laurà, D Calabrese, R A C Hughes, D Radice, A Solari, & D Pareyson, (2014, March) Is overwork weakness relevant in
Charcot–Marie–Tooth disease? Neurol Neurosurg Psychiatry, 85(), 1354-1358
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