Preview Mode Links will not work in preview mode

Beyond the Disability is a podcast that highlights the lives of those people living with a disability.

Jul 1, 2021

In today’s episode, we talk with  Alfonso about CMT, Charcot – Marie – Tooth Disease.  Alfonso was diagnosed with CMT at the age of 13.

 Charcot-Marie-Tooth disease is a group of disorders that affect the peripheral nerves, the nerves running from outside the brain and spine. Defects in many different genes cause different forms of this disease. Common symptoms may include foot drop, foot deformity, loss of lower leg muscle, numbness in the foot or leg, “slapping" gait (feet hit the floor hard when walking), and weakness of the hips, legs, or feet. There is currently no cure for Charcot-Marie-Tooth disease, but physical therapy, occupational therapy, braces, and other orthopedic devices, pain medication, and orthopedic surgery can help manage and improve symptoms. (https://rarediseases.info.nih.gov/diseases/6034/charcot-marie-tooth-disease)

 

Conversation Highlights:

{2:00} Story of Diagnosis, and teen years struggling with coming to the reality of the situation

{7:14} Choosing future goals and career paths. The college years

{9:41} What is CMT

{10:45} Early Symptoms of CMT

{12:30} Working full time while having CMT

{14:01} Daily Routine living with CMT

{16:35} Advice for a young person recently diagnosed with CMT

{21:00} Advice for an adult recently diagnosed with CMT

 

Resources:

betterhealthandrehab.com

https://www.cmtacamp.org/ 

Button Hook and Zipper Pull One Hand Buttons aids Button Assist Device https://www.amazon.com/dp/B07B6RSVH7/ref=cm_sw_r_sms_api_glt_fabc_046A97V9Z7RDJ4E1B2JW