Re: Essay (?) AFOs-To Joyce

[Guest guest]

Joyce,

Great post! I am so pleased you are able to see your mother's denial

regarding CMT. Evidently, some people never open their eyes to CMT or life

itself, and to me that is very sad. For your sake, I'm thankful you see and

understand where your mother is coming from.

----- Original Message -----

From: " Joyce S " <imjerce@...>

< >

Sent: Wednesday, March 27, 2002 10:36 AM

Subject: [] it turned into an essay re: AFOs

> I read the article about AFOs that was posted here,

> and thought I would share my experience with my mom

> who also has CMT. My mother is the quintessential

> Queen of Denial! She always has been, and so has my

> father who does not have CMT, but is pretty near deaf

> and won't wear a hearing aid at all. Through much

> psychotherapy I have learned that this is typical in

> adult children of alcoholics, as they each are.

> Nonetheless, I am amazed at what they accomplished

> together in terms of a home and family, and I am

> extremely thankful for having these two survivors

> raise me.

> A couple weeks ago, my mom and I had an opportunity to

> talk about our CMT. It was amazing for me, as she

> hasn't really spoken about CMT with me since I left

> home 14 years ago. She had been to her podiatrist for

> callous removal(something she does at least once a

> month), and he found a broken bone in her foot. She

> figures it was from a fall before Christmas time in a

> restaurant. I knew about the fall because Mum was

> with my sister and her 16 mo old son, and my sister

> called me, very upset, asking me what " to do with Mum "

> since she won't see a dr or use a cane or anything to

> help herself get around better. Not only won't she do

> any of those things, but now she is stalling on

> getting the bone set! She is worried that if she is

> in a cast for any length of time, she will lose more

> muscle and " not be able to walk at all " . So she has

> it in her mind to see a neurologist to see how much

> nerve loss she does have in her legs, BEFORE she goes

> to an orthopedic surgeon to have the bone fixed. She

> says, " You can't give in to it. You gotta fight it! "

> In my opinion, her idea of " fighting it " , is putting

> off the inevitable and suffering in the process. So I

> tried to tell her the only muscle she would lose if

> any, is the calf muscle, to which she replied " That's

> already gone! " . So I told her then the worse that

> would happen is she may have to wear an AFO, and I

> already wear 2 of them, and they help a LOT! She was

> quiet on the other end of the phone. I'm thinking she

> was going through all the negatives she could muster,

> without expressing them to avoid upsetting me.

> In the meantime, she is gulping down her favorite

> anti-inflammatory(Nuprin), and walking around (however

> limited) on a broken foot, waiting for an appt with a

> neurologist, and then MAYBE at this rate getting an

> orthopedic by summer!

> So Dr. Vinci has a very valid point about the CMT

> patients' reservations on the aesthetics and comfort

> of the AFO. I say it all the time: CMT is a very

> frustrating condition to have since often we are not

> viewed to be debilitated enough for a wheelchair(where

> others visually see the physical challenge) and yet we

> ARE physically challenged(as much as 3 or 4 times that

> of a " normal " person, according to my neurologist).

> But since others can't " see " the challenge, they

> question it's validity. And then sometimes, as in my

> case, the person with CMT often questions their own

> limitations' validity as well. Without knowledgeable

> professionals(in my experience, knowlegeable

> professionals are scarce) to support the CMT patient,

> often conflict arises leading to greater psychological

> consequences for the CMT patient. Again, a suffering

> of the CMTer that others often can't visualize.

> I apologize for the length of this post, but I felt

> like shedding a greater light on Dr. Vinci's article.

> And I am aware that I am " preaching to the choir " , but

> it feels better to " get it all out " !

> Thank you,

> Joyce

>

> __________________________________________________

>