My 24 year old does not wear any kind of braces. He usually walks fairly well, however, he sometimes gets a nervous twitch in is legs and just goes down. Is this part of his CMT or do you think it is something else?
Welcome to the group Parent! So, glad you found us.
My experience here has been that fatigue,a lack of balance due to stress or sometimes just hitting a rough place (uneven ground or a spot in the floor ( slightly dipped or uneven) can create a reason for his gait to change will cause us to easily lose footing and go down; I also have knees that will sometime pop out or the nerve is misfiring and will cause the muscle to spasm or lock up. Braces are sometimes good to stabilize where we have weakness (ankles ,Knees or drop foot gait) I went til age 40 before being fitted for braces, and I initially balked at it b/c figured I been walking mostly fine ( I did fall but thought I was just clumsy) I also have propreception ( knowing where you body is in the space around you) and the slightest thing can cause me to quickly lose my balance and I go down. So, if I walk any distance, I must have braces, however just in my on environment most times I do not use the braces. I have also resorted to wheelchair if there is a long way and long day of walking involved in an outing. I look at these as TOOLS to make me able to do things I would otherwise refrain from and cheat myself and family out of me sharing the experiences. He might want to consider trying braces and see what a difference it could make; MDA usually will help with that or a roll-o-matic, which allows you to walk with assistance but has a seat to take breaks and rest (especially if you have to stand in lines for a while) It takes more muscles to stand still in one place than it does to keep moving and therefore can fatigue a CMT person, and tire you for the rest of day or even longer. Neuropathy affects people in various ways, so to be safe, check with the doctor if there is another cause for the seemingly random falls.
Remember, wheelchairs, scooters and any other assistive aid is a Tool ; Why use a hammer when you can get more done with an air gun nailer! Hand saws were great in their day but a skill saw allows you to work smarter rather than harder!
CM said:
Welcome to the group Parent! So, glad you found us.
My experience here has been that fatigue,a lack of balance due to stress or sometimes just hitting a rough place (uneven ground or a spot in the floor ( slightly dipped or uneven) can create a reason for his gait to change will cause us to easily lose footing and go down; I also have knees that will sometime pop out or the nerve is misfiring and will cause the muscle to spasm or lock up. Braces are sometimes good to stabilize where we have weakness (ankles ,Knees or drop foot gait) I went til age 40 before being fitted for braces, and I initially balked at it b/c figured I been walking mostly fine ( I did fall but thought I was just clumsy) I also have propreception ( knowing where you body is in the space around you) and the slightest thing can cause me to quickly lose my balance and I go down. So, if I walk any distance, I must have braces, however just in my on environment most times I do not use the braces. I have also resorted to wheelchair if there is a long way and long day of walking involved in an outing. I look at these as TOOLS to make me able to do things I would otherwise refrain from and cheat myself and family out of me sharing the experiences. He might want to consider trying braces and see what a difference it could make; MDA usually will help with that or a roll-o-matic, which allows you to walk with assistance but has a seat to take breaks and rest (especially if you have to stand in lines for a while) It takes more muscles to stand still in one place than it does to keep moving and therefore can fatigue a CMT person, and tire you for the rest of day or even longer. Neuropathy affects people in various ways, so to be safe, check with the doctor if there is another cause for the seemingly random falls.
Remember, wheelchairs, scooters and any other assistive aid is a Tool ; Why use a hammer when you can get more done with an air gun nailer! Hand saws were great in their day but a skill saw allows you to work smarter rather than harder!