Re: difficulty finding the right words

[Guest guest]

,

Yes, this happens to me also, but I have found other friends who don't have CMT

have this problem at times.  So can't say if it is related to CMT definitely.

Patti 

[Guest guest]

,

Are you referring to descriptive terms when discussing symptoms, problems,

pains, etc., associated with CMT?

Mark

[Guest guest]

Yes, Ever since I started taking anti depressants. I used to have a memory like

an elephant. Now I am lucky to remember the kids names.

[Guest guest]

For years I wrote, writing everything, speeches, proposals, NLs, etc.,

was so good at it, but felt I needed to upgrade my speaking skills, so

I began attending Toastmasters - and that was exactly what I needed.

That, and serving as a Speaker at 12 step meetings got me where I want

to be. Sometimes my brain thinks so fast, I have to listen to what it

says first, sort out the thoughts, then speak. My Physical Therapist

once asked me if I was a " Type A " person, lol, I said, " not so much in

body, but YES in mind " !

Gretchen

[Guest guest]

Hi ,

Yes, I experience this as well.

I've never been as articulate or fast speaking as others around me.  I've notice

this same thing in my family members with CMT as well. 

During my working career, I found I could be much more powerful when I had time

to sort out my thoughts and find the right words in writing.  In fact, several

times I had people tell me that they were surprised when they met me in person. 

Based on my writing, they had expected a powerful, dynamic person and

were surprised to find that in person I was soft-spoken with deliberate words. 

In recent years, the problems have extended beyond not being able to quickly

find the right words.  Now I find that the fatigue makes it difficult to sort

out complex issues in my mind and articulate complete thoughts anymore, even in

writing.  My husband, who is older than I am but still very quick with his

words, kindly gives me plenty of time to think and try to get the thoughts out

before he begins to speak.  If I have a complex issue or task I need to

complete, I might have to work for days to build up my energy and get the

circumstances just right, i.e. enough sleep, correct sitting position, timing of

the meds, etc., to complete a task.  I frequently feel like I haven't

represented myself correctly in situations, because I wasn't able to articulate

the thoughts properly.  Now, I never go to the doctor without everything I want

to say written out completely, so I don't lose my words or thoughts.  It's very

frustrating.

I know they say that CMT doesn't affect the mind, but it feels like it to me. 

As a teenager, my mind was very sharp and I used to have nearly a photographic

memory when it came to names & numbers, but now it's not uncommon for me to

forget my own phone number or address.  I don't think it's a coincidence that

the decline in my thinking and speaking ability over the last few years has

occurred at the same time that I've also experienced a significant change in the

rest of my body.  To me, it's too much of a coincidence to not be related.

I do agree that it is normal to forget things as we age, but I don't believe at

45 yrs old that's what I'm experiencing.  To me, this isn't

just normal forgetfulness or lack of finding a word now and then.  It's a daily

struggle to express what I feel.  I know fatigue plays a huge part and perhaps

medications as well, but I believe it's more than that.  I do think CMT is

having an impact.

 

[Guest guest]

Mark,

No, this problem with my speech is not specific to describing CMT. I

can be thinking about anything, but when I go to say it, it doesn't

come out right. I sometimes feel like I'm struggling for words. It

doesn't happen all the time (thank God), but it is happening with

increasing frequency. To me, it seems to go hand in hand with my

physical degeneration.

[Guest guest]

Hi ,

You seem to understand what I'm trying to say. I have to believe it

is connected to my CMT because it coincides with the progression of

physical symptoms. I used to be very articulate and had no problem

speaking before groups. The problem with my speech seems to have

started around the same time I developed drop foot. I was diagnosed

a little over 3 years ago(at 56) and am on my third set of AFOs.

The atrophy of my muscles has definitely progressed. I guess I have

to be very deliberate about what I say(as you are) and go over in my

mind every word I want to say. This is harder for me to make

accomodations for than physical failings. That's cause I used to

think and speak automatically, I guess. I have to learn to take an

extra amount of time with my speech, as I do with walking.

(especially on uneven terrain).

It took numerous falls(one of which required 6 stitches in my head)for me to

realize that something was wrong with me in the first place. I never noticed I

wasn't picking up my left foot! If there's one thing I've learned about CMT

it's how different each one of us is. I think there is so much more to be

discovered.

[Guest guest]

This is all very interesting. I've noticed some changes taking place myself.

Whether or not it is related to the disease itself, or possibly the medication I

take, I've noticed that my sharp as a tack approach to everything is not as

razor sharp as it used to be. Then

again, things do tend to change as you grow older. Coincidence? Who

knows..........., but more and more people are talking about this issue and I

think it might warrant further investigation. After all, we are talking about

components of the central nervous system, and if you've got parts that are

slowing and showing signs of fatigue, it only

makes sense that you'd begin to wonder if it is having an effect on the system

as a whole. If my tomato plants show signs of fatigue, I often times break off

dying limbs or growth that is not deemed necessary to make the plant flourish.

One can't help but wonder if we are subjected to a similar syndrome as well.

Mark

[Guest guest]

Hi ,

I agree, there is still much to be discovered.  In the meantime, it's great that

we have a site like this where we can connect with others and know that we

aren't alone...and we aren't imagining it!  Thanks for bringing up this topic!