Barbara Smith...

Your commentary pin-pointed why I was so eager to have the collagen injections
into my vocal cords, Barb.  It's awful thinking... KNOWING no one's hearing ya
and that you've become kinda 'invisible-in-plain-sight.

I was SOOO frustrated by people repeating "What? WHAT? I can't  HEAR you" at
me whenever I was speaking!  And I noticed after a while friends would start
to second-guess what I was saying (and they were often wrong!) just because
they were too impatient to even let me get to the end of a sentance. - that
they couldn't hear anyway.

Prior to my Oct. ' 94 unilateral pallidotomy, my voice was normal... strong,
but my face was immobile.  After the pallidotomy, my face became very
expressive,  and within a few months my VOICE started fading!  And
fading...... and faaaaaaaading (deep sigh).

I found I was straining to speak louder, but couldnt't tell if I was actually
doing so because at no time did my voice ever sound "faded" to ME - even when
it was at it's worst.  Even THEN - to me - my voice sounded "normal," tho
obviously it wasn't to others.

I also noticed that several months after my voice became faint, that I began
to have a kind of "stutter."  And many of our List-family will know what I'm
referring to as we've discussed this very thing here amongst ourselves
recently.

WIth the return of my "normal" speaking voice, I've noticed that no one ever
says "WHAT? I can't HEAR you" at me any longer (YEA!)   And lately I've also
noticed the stutter has began to disappear! (MAJOR "YEA!!!") <smile>

I had to think 'bout that for a while, and finally have concluded that it's
possible many of us Parkies actually are suttering in frustration in an effort
to be HEARD!  We MAY be trying to get all the words out as fast as we can.. to
get what we want to communicate SAID.... before people start losing interest
in a voice - and a PERSON - whom they can't hear.  Hence that "PD stutter..."
(and maybe not?  The jury's sitll out on this one..)

The initial injections usually last from 3 to 5 months before the body absorbs
the collagen, then they're neede to be repeated.  Thereafter the injections
are needed about once every 10 or 12 months.   I had the initial injectoins
done two and 1/2 months ago and my "normal voice" is still going strong.... so
far.   But when folks start saying "What" at me again, I'm sure not going to
have the frustration and inner pain of not being heard again!   Not when
"normal" is just a painless, five minute procedure away!

Barb Mallut
[log in to unmask]



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From:   Parkinson's Information Exchange on behalf of --- Barbara Smith-----
set parkinsn digest---- set
Sent:   Sunday, August 10, 1997 9:12 AM
To:     Multiple recipients of list PARKINSN
Subject:        Re: loss of communication

 When my husband was first diagnosed with PD 16 years ago, I was having a
very hard time dealing with  the loss of expression in his face and body
language. To me as a trained observer of body language, this meant he wasn't
interested and was bored. When I read Sidney  Dorros' book and realized that
this was only the PD mask, I learned to listen only to the words he said, and
this worked for many years until he became unable to say the words in such a
way that I could  understand him. He tended to go silent rather than to try,
and I, frustrated, tended not to talk with him much any more. Since he has
been taking Aricept, his ability to speak clearly has returned along with
some facial expression .  He tells me now how frustrating it is not to be
able to  talk to the people he's   talked to all his life(he was an  trial
attorney and a judge). I notice that others besides his family are talking to
him more now that they can get a response again. What a lonely feeling it
must be not to be able to say the things you want to and to have people avoid
you because they think you don't understand. I know that I as a caregiver
felt very lonely in his presence when he could not communicate. Also, I, and
others tended to talk for him and about him in his presence. Now he stops us
and I realize that this too must really frustrate PWP. I know that our
success with Aricept is the exception rather than the rule for PWP, but the
fact that it has been so helpful to Ken has made it possible for him to let
us all know that he was really with us even when he seemed so far away. I
imagine this is true of all of you. God bless you all.
                     Barbara Smith,CG/Ken?69/16