Re: admitting having a problem

[Guest guest]

Hi Elaine,

When I started this journey one year ago I didn't even know about CMT. I went

to my podiatrist for right foot pain. The same pain I had in the left foot over

10 years ago. I thought this was going to end up with a little surgery and new

orthotics and all would be good again. Even when the EMG was ordered I didn't

think there was going to be any problems. And when the doctor said during my

EMG " hmmm that's not normal " I still thought it would end up being something

simple. Easy fix I thought. When I think about it now I realize I

accepted the CMT the day I fell for the first time. I mean I haven't fallen

since I was a kid. When I fell over a dog toy in my living room this past

winter is when I realized I do have CMT and it may get worse from here on out.

Since then my father has brought me a walker that I have refused to use it. The

use of a cane has been suggested but I don't feel I need one right now. I think

everyone is different in when they will fully accept CMT and when they are going

to use different types of walking assistance. You will know you need help

because your body will let you know. I think our bodies tell us it needs help

but the brain doesn't want to admit such a thing. As for me I've accepted that

I have CMT but I still can't accept using a cane etc because I don't feel my

symptoms are that bad yet. You seem to be very active still so maybe you would

only need ankle braces or AFOs for certain types of activities. I've also read

many good posts about different exercies to help with balance. Maybe you could

incorporate those exercises into your workout routine. I think Gretchen has

many exercises for balance and I'm sure others can give you ideas.

Best wishes.

Elaina

[Guest guest]

Hi Elaine,

You may want to try a Muller brace for your drop foot. You just buy them at a

sporting goods store. As far as admitting you have a problem the more you admit

it the easier it gets.

[Guest guest]

Elaina,

I was diagnosed 20 some years ago and I guess I was young and went into somewhat

of denial. I knew I had a " neuromuscular disease " but avoided doing things that

would make my life easier. I did not wear my AFOs regularly for 15 years. I

started wearing a knee brace because my knees were hurting from the

hyperextension and I would use my cane. I would usually just tell people I hurt

my knee. I was(am) single and did not want to come off " weak " .

Now I wear my AFOs due to necessity all the time and use an electric scooter for

distance. These past 6 months have been like a ray of light had hit me. I have

been becoming more involved with being around disabled and wheelchair bound

people and I feel honored to be accepted by these incredible people. I realize

that I am lucky that I can still get up and do the simple things without having

to be confined to a chair. If the day comes that I have to be confined, I know

now that there is a huge support system out there of smart, talented. live-life

kind of people.

So, the point of this is, you are right. Your body will tell you when you must

re-adjust your mind. Just try not to be stubborn and realize that whatever

assistance you need to make life easier, do it sooner rather than later. Each

time I did this, it opened my world a little bit more to what I may have been

avoiding.

Jackie

[Guest guest]

Jackie,

You are so right. Thank you for your encouraging post and positive outlook.

Isn't it amazing how the mind works. It can get ahold of the tiniest

negative thought or idea and can consume everything. All it takes is one

person,

like you, to add that bit of positive thinking.

Thanks again.,

Elaina.

[Guest guest]

Hi Elaina,, thanks for your reply, you seem to always have good ideas...

Elaine

[Guest guest]

Thank you Elaine. I appreciate that so much!

Happy 4th!

Elaina.